tag:blogger.com,1999:blog-25544307437806150412024-03-05T04:24:31.434+00:00Autistic ProfessorWriting about the consequences of being identified as autistic late in life.Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-2554430743780615041.post-776022159843381222023-11-13T14:49:00.007+00:002023-11-13T15:01:06.861+00:00 Advocacy: some challenges and benefits<p><br /></p><span id="docs-internal-guid-c7c9a467-7fff-1e00-586c-cc1f32f4ce52"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I took the decision to start advocating back in 2017, after more than a decade of concealing my hearing and balance issues, and of course a lifetime of masking my autism. I decided to be more open about it all in the hope that I could increase awareness of the challenges facing people like myself and even change the world a bit for the better. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It was not an easy decision. I am not someone who likes to share personal experiences in this way. I’d rather be professional and just get on with the job in hand. So why do it? Because I feel a responsibility to try to improve things for other people. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I am a privileged person in a senior position in a university. People tend to take notice of what I say. Of course, it should not be this way. Everybody’s voices should be heard. But I am very aware of the many autistic people whose voices are not heard. Since I am able to influence things, I feel it is my duty to try to put over an autistic viewpoint, even though of course I recognise that I do not represent all autistic people and would never claim to do so. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My mission, as I see it, is to be intensely and publicly honest about my own experiences, in a way that enables others to understand the various challenges and difficulties they create. Not because I am seeking sympathy or trying to get the entire world to configure itself to suit my needs - everybody has challenges and difficulties - but because mine are representative of a proportion of the population who have traditionally been marginalised or excluded. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">That makes me an advocate, and consequently I call out ableism when I see it and do my bit to support other autistic people by working with groups or organisations like the NHS and local councils. I use my national and international platform to advocate too, through projects like</span><a href="https://auraldiversity.org/" style="text-decoration: none;"><span face="Arial, sans-serif" style="color: #1155cc; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"> Aural Diversity</span></a><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> and </span><a href="https://andrewhugill.com/spectrumsounds/" style="text-decoration: none;"><span face="Arial, sans-serif" style="color: #1155cc; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Spectrum Sounds</span></a><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">To give a few examples:</span></p><br /><ul style="margin-bottom: 0px; margin-top: 0px; padding-inline-start: 48px;"><li aria-level="1" dir="ltr" style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; list-style-type: disc; vertical-align: baseline; white-space: pre;"><p dir="ltr" role="presentation" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">while advocating for aural diversity, I have had an impact on the Welsh Government, whose recent call for responses to their proposed </span><a href="https://www.gov.wales/noise-and-soundscape-plan-wales-2023-2028" style="text-decoration: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">noise and soundscape plan </span></a><span style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">included an entire section headed “aural diversity”. This led to me attending the Institute of Acoustics annual conference, at which I felt obliged to be very “out” about my identity.</span></p></li><li aria-level="1" dir="ltr" style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; list-style-type: disc; vertical-align: baseline; white-space: pre;"><p dir="ltr" role="presentation" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I recently took a stand on the use of awaydays (see my <a href="https://www.autisticprofessor.uk/2023/09/awaydays-and-how-to-include-autistic.html" target="_blank">previous post</a> on the subject) in my university. By raising this in various committees I have demonstrably raised awareness of the issues and probably changed policy. The cost was having to be very public about my autistic needs.</span></p></li><li aria-level="1" dir="ltr" style="font-family: Arial, sans-serif; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; list-style-type: disc; vertical-align: baseline; white-space: pre;"><p dir="ltr" role="presentation" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">At my local GP surgery, I have raised issues about the use of fluorescent lighting in the waiting area. I’m not sure whether this will change - it seems that can take a very long time - but in the process one nurse did confide in me that the lighting had a bad effect on her too. Anyway, to do this required me to be very honest about my autism to strangers.</span></p></li></ul><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">While I can point to many such successes and examples of how my actions have made a difference, being an advocate does present challenges. I find that constantly being the one with the problem becomes tiring. I have a feeling that people might be rolling their eyes and thinking “oh no, it’s him again, endlessly talking about autism and/or hearing issues”. Part of me wants to go back to concealing and just “sucking it up” in the interests of moving things forward, regardless of the consequences for me. But another part of me resents this and says: why should I suffer to enable them to have things a bit more easy? Since I no longer fear the professional consequences of disclosure, I am much more willing to speak out. At the same time, I do not speak out about </span><span face="Arial, sans-serif" style="font-size: 11pt; font-style: italic; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">everything. </span><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">That would be too exhausting. You have to choose your battles. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The process of becoming aware of the social and environmental problems that beset autistic people itself tends to make you more sensitive. That sense of injustice that so many of us feel so strongly can also be injurious to your own wellbeing, especially if it cannot be channeled into positive action. The suspicion that those around you are quietly moving away, too, can be very disturbing, as you realise that something unspoken has changed and that attitudes have shifted. There’s that constant fear that suddenly you’ll find everyone ranged against you because you’ve “gone too far”. Classic autism.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">At those moments when I become over-anxious or dispirited in my efforts, I remind myself why I am doing this. After which I become even more determined to carry on with trying to make life better for everyone. Nothing worthwhile is achieved without a struggle. Sometimes I must “take one for the team” by speaking out in an awkward situation. So be it. I always try to act with courtesy, dignity and respect for others, so I hope I do this without giving offence. But sometimes you just have to be clear and assertive, which can be surprising for people.</span></p><br /><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-14143596920300446112023-09-14T17:05:00.010+01:002023-10-04T13:52:08.408+01:00Awaydays, and how to include autistic people<p><br /></p><span id="docs-internal-guid-656f4314-7fff-95ea-48fc-069ce4a149d9"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Awaydays have become commonplace in most organisations. They are </span><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">a day-long event for employees and managers to spend time away from their usual workplace or environment. They typically include team building exercises, training, or brainstorming activities. They are mainly used in the belief that a change of scenery would enhance creativity and relaxation. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">In practice, many awaydays have gradually lost this original sense of purpose. They often take place just in a different building or room on site, so they are not really ‘away’ at all. They can be full of unstructured or very loosely structured exercises using lots of post-it notes. They are frequently characterised by a sense of futility. This erosion of what seemed like a clear concept reflects their true function: to enable neurotypicals to feel more comfortable with one another. Sometimes the group will bond together in disapproving of the awayday itself. Funnily enough, that outcome can be productive.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">From an autistic perspective, this amounts to a nightmare. Awaydays cause more anxiety and distress than almost any other activity. Having established a working pattern and set of routines at work, the autistic employee is suddenly required to stop all that in order to undertake a series of activities that rely on social interactions whose purpose is often unclear and in an unfamiliar environment that may or may not be well suited. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Since most organisations contain autistic people, it is very important to plan awaydays effectively and inclusively. Here are a few thoughts. N.B. These are just my thoughts - others may disagree or want to add things!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">First and foremost, an awayday needs to have a clear purpose, a set of aims and objectives. That should include a statement of why it is necessary to go away, rather than staying in familiar surroundings. If you cannot come up with a convincing reason for going away, then please don’t do it!</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I would strongly recommend having autistic people involved in the planning. It seems obvious, but they will be best placed to advise on what will work and what will not.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">You should provide information and guidance well beforehand, including an accessibility map and, preferably, a video, or at least photos, of the venue and the approaches to it. There should be a quiet room available and you should have adjustable non-fluorescent lighting and use microphones for speaking. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">You should space out noisy activities or, preferably, segregate them into separate areas. Avoid using balloons or other objects which may cause distress. Make great use of visuals, signs and timetables. Provide a clear running order, highlighting anything particularly bright, noisy or unexpected.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Every activity should be clearly structured, with a defined purpose and statements in advance about what is expected. Give people the option to drop out if need be. Never make “one size fits all” assumptions. Make sure that you know in advance if there are to be any fire drills or alarms. Those can really disrupt everything, for the whole day.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">If you want to encourage unstructured social interaction (of course, there is no reason why the entire day should be made just for the benefit of autistics) then signal that clearly and give people who do not want to participate some acceptable way of ducking out. At some autistic events, people wear coloured communication badges to indicate whether or not they are open for conversation.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Bear in mind that autistic people can take longer to process information and may also struggle to explain how they are feeling, so build in plenty of space and time to get the best results. It’s ok to get personal – autistic people love talking about themselves! – but only in a way that gives the sense that we are contributing to a worthwhile exercise. In other words, there has to be an obvious reason. Avoid indirect and metaphorical speech and, obviously, expect social communication that lacks real and clear meaning to be greeted with incomprehension or anxiety.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">To summarise: if the autistic person understands the reason for everything, can follow a clear structure and schedule that is stuck to rigorously, and is encouraged to share their insights, then you can get great results. On the last point, be ready: autistic people can talk for an hour or more without stopping on certain topics. It’s a good idea to specify before asking someone a question whether you want a short answer, a long answer, or a very long answer!</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 8pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Finally, check in on spoons </span><a href="https://en.wikipedia.org/wiki/Spoon_theory" style="text-decoration: none;"><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #96607d; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://en.wikipedia.org/wiki/Spoon_theory</span></a><span face="Arial, sans-serif" style="background-color: #fcfcfc; color: #333333; font-size: 11.5pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> Most autistic people have a sense of how they are doing during the course of a day. Ideally, you want to end an awayday with enough spoons to be able to get home safely. If spoons are getting dangerously depleted, then please allow the person to duck out, to avoid having a meltdown or shutdown later.</span></p><br /><br /><br /><br /><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-83750250804404309792023-09-01T15:34:00.001+01:002023-09-01T15:34:31.642+01:00Experts by Experience<p><br /></p><span id="docs-internal-guid-d036e31f-7fff-2b25-393b-3a7e774fd487"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: medium; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Over the past couple of years, I have joined the ranks of autistic ‘Experts by Experience’ (EbE) who take part in consultations with organisations ranging from charities to the National Health Service to local councils. When I first heard that phrase I was intrigued, because in the academic world somebody like me would normally be an expert on a topic that stands apart from their lived experience. So, whereas I am a Professor of Music, in which I have worked since childhood, the pillars of my expertise do not rely on my lived experience as a composer and musician, but rather on the scientific and artistic knowledge about music that I have accumulated along the way. </span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: medium; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The need for these EbE has arisen fairly recently and mostly from social care. It is recognised by the sector that talking to professionals alone is inadequate, if you want to capture the knowledge required to make progress. For that, the voices of people on the receiving end also need to be heard and indeed given an equal footing. So, EbE are recruited to advise and contribute to discussions of strategy and policy as well as practical and organisational issues. In many ways, this is a very welcome development. Giving voice to traditionally under-represented groups has to be a good thing. However, there are also a few problems.</span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: medium; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">First there is the question of representation. I have frequently raised this issue. While I am delighted to be involved and contribute my insights, I am hardly representative of the whole of autistic people. In fact, those people who most need the services provided are often the ones least represented. For example, non-speaking autistic people and those with learning difficulties are usually absent. </span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Second, there is the thorny issue of remuneration. In all the groups I belong to, my advice and input has been sought without remuneration. Yet the professionals involved </span><span face="Arial, sans-serif" style="font-style: italic; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">are </span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">being paid. So, a familiar picture of oppression and exploitation emerges in which autistic people provide their services for nothing, while others make their careers out of autism. I have raised this frequently and vociferously, and I am confident that the professionals do understand the problem, but nothing has been done so far and so resentments build among the autistic community.</span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-size: medium;"><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Finally, there is the question of how EbE are chosen. Everybody has a lived experience, of course, so in theory </span><span face="Arial, sans-serif" style="font-style: italic; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">any </span><span face="Arial, sans-serif" style="font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">autistic person could be included. But there are clearly qualities that are required of EbE. These typically include an ability to talk openly and share with others. Since these qualities are determined by neurotypicals, this can become a source of difficulty, especially when autistic people start to express themselves. I have heard of meetings where rules have been set that constrain the EbE, when it is precisely in their unique expression that the autism resides. </span></span></p><span style="font-size: medium;"><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Arial, sans-serif" style="font-size: medium; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Despite these problems, I fundamentally like the idea of EbE and am happy to make my contribution as one. But the process of selection is fairly unclear at the moment. It would be good to have a transparent set of selection criteria, both to encourage inclusivity and to discourage people from arbitrarily using the EbE label.</span></p><br /><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-38621826958442689312023-03-30T12:21:00.001+01:002023-03-31T09:38:05.436+01:00Unconscious Bias and Autism<p><br /></p><span id="docs-internal-guid-74325aad-7fff-abbf-06f1-7b1bd63d615e"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Recently I have undertaken unconscious bias training. This will probably be familiar to anyone who works in a large organisation, but for those who have not come across the idea before </span><a href="https://royalsociety.org/topics-policy/publications/2015/unconscious-bias/?gclid=CjwKCAjw5pShBhB_EiwAvmnNV185ou0WeIPcDODRDooXDQUk9QdCLYyVbZfifSOh7mSnJKwZnlaFoRoCVvUQAvD_BwE" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">here</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> is a brief summary. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I should say at the outset that I think unconscious bias is real and the training I received was effective and made its points well. There is a paradox at the heart of the matter, though, which is this: once one becomes aware of unconscious bias, it is no longer unconscious and is then just plain bias. That tends to reduce the amount of self-forgiveness available (given that we all have these biases) which is a bit tough to take. But so be it.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My purpose in this post is specifically to think about how autism and unconscious bias may or may not connect. Of course autistic people are just as likely to exhibit unconscious bias as anyone else. However, there may be differences in the way it works.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">During the online training, there was an exercise (not part of the final test). We were presented with nine images and asked to group them into three groups. I immediately saw that three of them were red, three blue and three yellow/green. So I dragged and dropped them into those groupings. It did strike me as slightly odd that yellow and green were together, but I quickly rationalised that by thinking of the colours of the earth wires in a plug.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I clicked the “submit” button and the system responded:</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“That’s an interesting selection. Most people would have grouped them as cars, lorries and motorcycles”.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I was stunned and, to be honest, felt rather foolish. Making taxonomies is a frequent part of my research work and yet it had never occurred to me to group the images by what they </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">depicted</span><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">! I thought of Magritte and his “</span><a href="https://en.wikipedia.org/wiki/The_Treachery_of_Images" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">ceci n’est pas une pipe</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">”. Perhaps a lifetime of contemplating surrealism had led me to disregard depiction and focus on the properties of the image itself? But no, that was not it. It was just my autistic brain doing what it does. I realised that my interest in surrealism has probably been a way of seeking to understand its processes all along. Another moment of epiphany!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">But now my attention turned to the training and the comment “Most people would have…”. I began to feel very different. Of course, autism means I do not think like “most people”. I started to resent the tone of the comment, which then led me to ask: is the test itself showing unconscious bias? </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The test was designed to make a simple point - that we unconsciously tend to group people based on appearance. But what if your whole way of grouping people is not at all based on the way they appear, but on some other attribute? I’ve never understood racism, for example, because skin colour and the various other stereotypical characteristics are just not what I notice. Does that mean I have no racial bias? Probably not, but it is buried under a mountain of other stuff that filters it out, on the whole. I unconsciously group people, for example, by the extent to which they try to make eye contact, or by the sounds they emit, or by their smell. I’ve always done that. I know that racism exists, and I hate and try to resist it when I find it, but I don’t understand it. It just makes no sense.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The same is true of body language and eye contact. I’ve done quite a few interviews recently and the HR guidance we’ve received emphasizes the importance of not giving the wrong impression to candidates through inappropriate body language. And of course I, like everyone else who uses Powerpoint, have seen the kind of advice, or even assessment criteria, that give plus-points to a presenter who makes “good eye contact” and shows “positive body language”. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Whenever I encounter these kinds of advice, which are everywhere, I kick back against them by pointing out that not everybody can control their bodies and not everyone is able to make eye contact. Why should people be penalised for that? Is it not the very essence of bias to do so? I am deeply sceptical about the very concept of “body language”. Like many autistic people, I have spent a lifetime studying it, trying to figure out what on earth neurotypicals are communicating, or believe they are communicating. What I find is that there is a </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">kind </span><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">of “language” there, but it is one that continuously reveals untruths, deceptions and confusion. People use body language to reassure others, but in doing so they frequently engage in a collective self-deception that is comforting to the group, I suppose, but also delusional.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Here, it seems to me, is a real unconscious bias: against people who do not appear to go along with these incredibly subtle modes of non-verbal discourse. Since people do not understand body language, but just deploy it “instinctively”, they are completely unaware of the extent of its influence on their attitudes and decisions. It would be extremely difficult to unpick this in practice, and I imagine that nobody would be motivated to do so, so it looks to me that this kind of bias is here to stay and will escape my paradox by remaining perpetually unconscious. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">So, to get back to the training test, I’m afraid I did come to the conclusion that it was designed by neurotypical people for neurotypical people. The slightly sneery comment the system made just reinforced this impression. As an autistic person, I tend to view neurotypicals as a separate group, almost a different species. I guess that could make me biased against them, but I have spent a lot of my life trying to measure up to their standards, so actually I tend to think I am more biased against myself. Autistic advocates call this “internalised ableism”, which is about right. I reckon many of the difficult moments I’ve had in life have come about because of this failure to understand that I am judging myself by the wrong criteria. Now that is unconscious bias.</span></p><br /><br /><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-58135599621188872332022-10-28T12:04:00.000+01:002022-10-28T12:04:12.782+01:00Why I like tardigrades.<p> Several months ago I was seated in a cafe-bar in the town square enjoying a drink and wearing this t-shirt (or something very similar):</p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhngXN5xXJTe0EoPKZxm1mnSoJ9nUtLddb6MhWiZnwwnQ0VVh4q7nXh0wjo3P0GafAqJPxM2CK-MxpWKIc-C5ibH-LlRZMV4uTAtiSc6GD88ZAu3dptavNV8FWRWSIZMQUP4nKsWiiGpYH3LD4S07FdNWO7JzF7Zi9YryO4muOS7P4aTZTKGKJjP5M4" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1395" data-original-width="1391" height="344" src="https://blogger.googleusercontent.com/img/a/AVvXsEhngXN5xXJTe0EoPKZxm1mnSoJ9nUtLddb6MhWiZnwwnQ0VVh4q7nXh0wjo3P0GafAqJPxM2CK-MxpWKIc-C5ibH-LlRZMV4uTAtiSc6GD88ZAu3dptavNV8FWRWSIZMQUP4nKsWiiGpYH3LD4S07FdNWO7JzF7Zi9YryO4muOS7P4aTZTKGKJjP5M4=w343-h344" width="343" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">I was approached by a young man who wanted to talk to me. Normally this would be a terrifying prospect, but this person wanted to talk tardigrades. It turned out that he was also autistic! We have since stayed in touch and are working together as part of an autistic adults group.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">It was no surprise to me that another autistic person likes tardigrades. In fact there are many of us who are fans of the so-called water bears. But why?</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Tardigrades are extremophiles, that is to say: a creature that can live, or even thrive, in an extreme environment. You can expose them extreme temperatures (e.g. they live for 30 years at -30 degrees), expose them to lethal levels of radiation, crash into them at high impact, and subject them to ridiculously high (or low) pressure: it matters not to the tardigrades. They can survive anywhere, from frozen mountain-tops to ocean depths. You can starve them, dehydrate them and even send them into outer space, they will still survive. In September 2007, a collection of dehydrated tardigrades were taken into low Earth orbit on the FOTON-M3 mission. For 10 days, they were exposed to the hard vacuum of outer space. Back on Earth, more than 68% of the tardigrades were reanimated within 30 minutes following rehydration. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">It's not hard to see why autistic people identify with tardigrades. The idea of being forced to survive extreme environmental conditions finds a direct parallel in our lives. More than that, the tardigrades are such an alien life form. Their perception of the world is not at all typical. Their bodies consists of a head, three body segments each with a pair of legs, and a back end with a fourth pair of legs. Their feet have four to eight claws each. They have an unusual and complicated feeding apparatus at the front end, resembling a kind of retractable trumpet. They grow to a maximum length of 1.5 mm (0.059 in) and so may be seen by the naked eye but are generally best viewed under a microscope. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Tardigrades have been around for at least half a billion years, to the best of our knowledge. I believe that, after the coming climate catastrophe, they will outlive Homo sapiens and may well become a dominant species in their own right if the planet does indeed become an extreme environment. Who knows - they may grow and develop as they evolve happily in this different world. All hail the tardigrades! </div><br /><br /><p></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-1738089535954830132022-09-18T14:54:00.007+01:002022-09-22T12:56:20.116+01:00 Social Isolation<p>Readers of this blog will be aware that, as well as being autistic, I have severe unbalanced hearing loss and tinnitus, thanks to Ménière's disease (a balance disorder with consequences for hearing). I have written about <a href="https://www.autisticprofessor.uk/2021/06/mind-v-body-autism-v-menieres.html" target="_blank">the overlap between Ménière's and autism</a> before. Social isolation is a well-known consequence of both hearing loss and autism, <a href="https://pubmed.ncbi.nlm.nih.gov/32151193/" target="_blank">often linked to </a>loneliness, higher health care needs and increased mortality rate. I mention all this, because the story I am about to tell illustrates how this affects people like me, even when everybody around has the best intentions and tries to help.</p><p>A couple of weeks ago, I attended the <a href="https://internoise2022.org" target="_blank">Internoise</a> conference at the Scottish Exhibition Centre in Glasgow (an enormous venue where the COP26 summit was held). I was invited to chair a panel on <a href="https://auraldiversity.org" target="_blank">Aural Diversity</a> (a research project about hearing difference that I lead). Internoise is the largest conference in the world on noise control engineering. As you can imagine, the kind of research they deal with is mostly large-scale and industrial in nature. So it was a rare thing to find them being receptive to the idea that not everybody hears with perfectly normal ears. This shows that the kind of advocacy I and many others engage in is beginning to penetrate. </p><p>My session went very well and we had a lot of positive feedback and interested engagement from the scientists and engineers. This post is not really about the academic side of the conference. If you want to find out more, then the website given above and the new <a href="https://www.routledge.com/Aural-Diversity/Drever-Hugill/p/book/9781032024998" target="_blank">book on Aural Diversity</a> that I co-edited should suffice. </p><p>I sent the conference organisers my <a href="https://andrewhugill.com/writings/Access-Rider-Andrew-Hugill.pdf" target="_blank">Access Rider </a>well in advance, and they shared it with the venue. This really paid off, because I was well looked after. I was personally greeted by very sympathetic people who were keen to help, and eager to learn more about what they could do to support me. I had a quiet room, complete with suitable lighting, stim toys and an emergency bucket in case of vomiting (fortunately not used). The session I chaired was well managed, with low level lighting and silent applause. In other sessions, I had reserved seating at the front. I was given navigation guidance and centre staff helped me quickly and politely if I lost my bearings. All in all, it was superb and the result was that I ended each day with sufficient <a href="https://en.wikipedia.org/wiki/Spoon_theory" target="_blank">spoons</a> to be able to enjoy the evenings.</p><p>On the final evening, there was to be a social event. Normally, I would not attend such events, but on this day I had no panel to chair and no papers to give and all of my aural diversity colleagues had left town, so I thought I would give it a go. Armed with my survival bag (noise cancelling headphones, personal air purifier, clip-on sunglasses, etc.) I set off on the half hour walk across Glasgow to arrive at Merchant's Square, an enormous and historical indoor market that was filled with retail outlets and restaurants. It had been booked out by the conference and we were welcomed in by a piper (great!) and the main organiser who had been so nice to me.</p><p>The plan was for supper followed by a ceilidh (Scottish dancing). I had already decided that I would leave before the ceilidh, but I was looking forward to the supper and perhaps having an opportunity to meet some of the delegates who were not aware of aural diversity. However I had, of course, completely underestimated the overwhelming scale of the place and the wave of noise. There were several hundred people all talking in a space that was vast and echoing. Within ten minutes, I realised that my headphones were not sufficient to prevent the noise getting through, and my proprioception began to collapse as I could not see the corners and I started to lose a sense of my physical presence. </p><p>It was a dangerous situation and I knew I had to get out (all thoughts of social interaction had already departed). As I rushed for the exit, the nice organiser spotted me and was immediately concerned. I explained the situation and she quickly summoned one of the restaurant managers. I was offered a free meal in an isolated spot. I was naturally very grateful and so found myself sitting in a side area away from the crowds, eating a meal alone, before anybody else had been served food. I ate it as quickly as I could and left. My social isolation was complete and it took a big social event to reveal just how socially isolated I am.</p><p>There is a twist to this tale. It was too early to go back to the hotel, so I walked across town and ended up in a traditional Scottish whisky bar. There were only a few people there and it was quiet, so I happily sat and drank a very nice single malt (Port Charlotte). The barman, looking to increase clientele, asked if I would mind tagging my location on Facebook, which I was happy to do. Suddenly, an old friend of mine from Amsterdam messaged to say that he happened to be in Glasgow that night! I had not seen him for ten years, so it was a real joy when he appeared in the bar and we spent a wonderful evening together, talking, drinking and reminiscing. I am quite content to sit on my own, but I am also very happy to be with a friend or in a small group. </p><p>Social isolation is a real issue for people like me. I think it has affected my career, especially in music which seems to rely on networking and self promotion. It is ironic that noise was my biggest problem at the social event of a conference devoted to noise control. The people who are most concerned with reducing noise turned out to be unable to control it themselves. It mirrored my position at the conference itself: an interesting insertion into a field that is yet to recognise the full extent of the diversity of lived experience. I like to think that my evening will have had an impact on the organisers, such that they might in future years be able to offer alternatives to gathering everybody into one big space like that.</p><p> </p><p><br /></p><p><br /></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-81208649433637129252022-07-09T14:36:00.003+01:002022-07-09T14:36:31.043+01:00Access Rider in action!<p> <span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Earlier this week I gave a keynote presentation to the </span><a href="https://acoustics.ac.uk/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">UK Acoustics Network</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">‘s Annual Meeting. My topic was Aural Diversity and I took the opportunity to showcase the </span><a href="https://auraldiversity.org/infographic.html" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">infographic</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> that I have created that attempts to describe the entire field. Aural Diversity, rather like neurodiversity, draws attention to the wide range of differences in hearing between people (and animals, and machines). Everybody hears differently, something that is a neglected aspect of many disciplines, not just acoustics. The general assumption is that people possess a pair of equally balanced and perfectly healthy ears. The reality is that only about 17% of the population (the group of healthy 18-25 year olds) possess those. Everybody else has some kind of distinctive difference. Neurodivergence, and specifically autism, is included on the infographic.</span></p><span id="docs-internal-guid-56728eea-7fff-7ba5-4201-6f91c8166a0f"><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The UKAN event involved me staying two nights in a hotel in Manchester, where the conference was to take place. This was the first time I had been away from home since the start of the pandemic. Consequently, it was also the first opportunity to try out my </span><a href="https://andrewhugill.com/writings/Access-Rider-Andrew-Hugill.pdf" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Access Rider</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. I was first asked to produce an Access Rider in 2021 by </span><a href="https://www.thespace.org/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Space</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, when they commissioned my </span><a href="https://andrewhugill.com/spectrumsounds/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Spectrum Sounds</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. I was assisted in its preparation by the wonderful people at </span><a href="https://weareunlimited.org.uk/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Unlimited</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. It was a very interesting exercise, getting me to focus on my needs and find ways to express those so that others could understand. I would greatly recommend to others that they prepare Access Riders too, especially if they work in areas that frequently involve venues and audiences. Unlimited have created this excellent </span><a href="https://weareunlimited.org.uk/resource/creating-your-own-access-rider/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">guide</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> to help you.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I sent mine to the UKAN team well in advance, and they took it very seriously. It was really gratifying to find so much of what bothers me taken care of in advance. It made me feel welcome but also, rather like with disability assistance in airports, it made the whole experience much easier to manage. Special thanks go to </span><a href="https://acoustics.ac.uk/team/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Zoë Hunter</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, who made sure I was looked after and also spent quite a lot of time listening to me ramble on! Well beyond the call of duty.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The emergency contacts were well noted, but fortunately were not necessary. I was nowhere near a crisis at any point, which is a credit to the organisation. The </span><a href="https://www.hyatt.com/en-US/hotel/england-united-kingdom/hyatt-regency-manchester/manrm?src=corp_lclb_gmb_seo_manrm" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Hyatt Regency Manchester</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, having been made aware of my needs, not only put me in a wonderfully quiet room which smelt of nothing, but also provided a separate lunch for me in, appropriately enough, the Turing Room. This meant I could avoid the noise and bustle of the restaurant, which was great. The lighting was appropriate, there was no pressure on me to interact any more than I wanted to, and I was able to avoid looking at the rather hideous carpet design most of the time.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">There were a couple of specific things worth reporting. Like most hotels, there was a regular fire alarm test every week. This hotel did theirs on a Monday at 11.00. Fortunately, this was advertised clearly in the lobby and the lifts. My session was due to end at 11 on the Monday. With prior agreement, I was able to leave the building five minutes before the hour. Everybody took this in very good humour, and there was no problem. People asked me questions later. And I avoided the alarm, which would otherwise have stolen at least two spoons for the day.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">At the end of my talk (which was the first in the day) the audience applauded. On my access rider, I had asked for no applause. The chair of the session was most concerned and apologised profusely. In fact, I was fine: the carpet and soft furnishings absorbed most of the sound, and the applause was brief anyway. But it could have been a problem on another occasion. So I took the opportunity to explain to the acousticians what the problem was. I explained that I much prefer “flappy hands”. They seized on this with pleasure and for the rest of the day there was no applause, only hands waving. I guess people are more familiar with this thanks to </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Strictly Come Dancing, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">but it was deeply appreciated and did much to ensure that I ended the day in good humour and with a decent amount of energy remaining.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">To summarise: do use Access Riders! They really work! And thanks so much to UKAN for paying such close attention to mine. </span></p></span><br class="Apple-interchange-newline" />Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-81136679446312268842022-05-18T13:43:00.001+01:002022-05-18T13:43:08.128+01:00Equality, Diversity and the REF<p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The REF2021 results have just been published. The REF (Research Excellence Framework) is an assessment exercise that rates the quality of research across the whole of higher education in the UK, institution by institution, discipline by discipline, and even person by person (although that personal information is hidden in the published results and has to be decoded). There is a lot riding on this exercise. The better your research is deemed to be, the more funding your university receives and the higher up the academic league tables you go. The results are given here </span><a href="https://results2021.ref.ac.uk/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://results2021.ref.ac.uk</span></a><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Apart from the academic review panels, there is also an Equality and Diversity Advisory panel, whose remit may be viewed here </span><a href="https://ref.ac.uk/equality-and-diversity/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://ref.ac.uk/equality-and-diversity/</span></a><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> They focus mostly on: “the environment for supporting research and enabling impact within each submitting unit”. (Environment accounts for 15% of the overall outcome awarded to each submission and is assessed against two criteria: vitality and sustainability). Their report makes interesting reading. As </span><a href="https://wonkhe.com/wonk-corner/the-ref-panels-review-themselves/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">James Coe</span></a><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> points out, the following passage gives pause for thought (my italics):</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Although the EDAP’s review of institutional and unit environment statements revealed much good, and some excellent, practice across the sector, it also showed that this was far from widespread. Although many institutions had successfully implemented several gender-related initiatives, </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: italic; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">there was much less attention given to other protected groups.</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> The panel therefore had little confidence that the majority of institutional research environments would be sufficiently mature in terms of support for ED within the next few years to totally dispense with a circumstances process”.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This reflects my own experience of ED in Higher Education. Despite the best efforts of disability groups and individuals (such as myself) in universities, disability remains the poor cousin of gender and ethnic diversity. “Equality” is normally code for gender equality, and “diversity” is normally code for ethnic or racial diversity. The various other protected characteristics (disability, religious beliefs, age, marital status and maternity) tend to get added as an afterthought at best. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So it is really alarming to see only gender being seriously considered as part of the research environment at most institutions. Given that disability is defined (horribly!) under the Equality Act of 2010 as “a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities” and given that there are 14.6 million disabled people in the UK (according to the charity Scope) it seems quite absurd that such little account should be taken of its consequences for academic researchers. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To be more specific, I have an admittedly unscientific suspicion that the actual numbers of autistic academics greatly exceeds the reported numbers. I am certainly aware of many colleagues who I imagine are autistic but who have not been professionally or personally identified as such. Given the extent to which autism can affect one’s interactions with the environment, it seems likely that this is a significant factor in the performance of such researchers, whether for good or ill. An exercise such as the REF really needs to take account of this. After all, we try to do the same for our students, so why not for the staff?</span></p><p style="text-align: left;"><br class="Apple-interchange-newline" /></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-8023162283245673592022-04-17T12:32:00.005+01:002022-04-17T12:35:28.428+01:00Ageing autistically<p><br /></p><span id="docs-internal-guid-25a54dd4-7fff-e11f-ae63-c5ea61a870c1"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is a tricky topic to write about, because from my autistic viewpoint I cannot see what my nearest and dearest can see, so I am relying a lot on feedback from my wife for these comments. People often remark on how young I look, given that I am 65 this year. I’ve heard it said quite often that autistic people tend to look younger than they actually are. I don’t know if that is really true, but what I can say is that time passes at the same rate for everybody.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My experience of autism has been all about fitting into the neurotypical world as best I can. I’ve found a job in academia which I can do well (I couldn’t do anything else, I think) and I go to work vigorously, whether travelling to campus or working from home. I have routines which I follow relentlessly every day. These routines drive me forwards. I walk briskly. I work in bursts of highly focussed energy, usually petering out by early evening as the spoons run dry. I achieve a lot: teaching, books, articles, papers, compositions, consultancies, advocacy, strategic initiatives, administration, leadership, committees, etc. The list goes on. I joke that I am semi-retired and part-time, but that is meaningless because “the university” requires me to do a full time job. That is only partly true. The full truth is that, even if the university did not make such demands on me, I would still work to the same level. That is the internal drive created by my autism. It’s what gets me up in the mornings.*</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">For the benefit of neurotypical people reading this, I should try to explain that this is quite different to just being hardworking or ambitious. Even on days off (e.g. Sundays) I will construct a routine to fill my diary. An empty diary page may induce anxiety, even panic. My self-imposed schedule is really a form of stimming, designed to calm me and give structure to my existence. The world is such a challenging place, that this provides a sense of purposeful forward motion. It’s almost like aesthetics: what Kant called “purposiveness without purpose”. The mind’s absorption into this activity is the highly focussed state that people call “flow”. In other words, I can make my daily life an autistic “special interest”.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">But a problem is emerging. There is a certain reality that is now overtaking me, to do with changes in my body. As bits of it stop working properly (the process really started in 2009 when I was diagnosed with Ménière’s) I can understand that this is just the natural aging process at work. I simply do not have the energy that I used to have. The problem is that adjusting to this new reality involves changes in routines.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My autistic brain will make no allowances for these changes. I know that it should, but I just cannot make it cooperate. So I continue to drive forwards as though there has been no change. This drive fills both my waking and, as far as I can tell, my sleeping hours too. There is no let-up in the need to structure and organise things. I’m afraid it is quite a cliché: the autistic urge to hyper-systematise everything. I do not know </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">how</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> to be any different to the way I have always been. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My body is an inconvenient necessity that challenges me every day. My mind, on the other hand, continues to seek and learn, delighting in everything it discovers and creates. I am told there is danger in this scenario. My alexithymia**</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> makes it difficult for me to know what I am feeling, and my interoceptive differences***</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> mean I cannot always tell what is going on internally. It seems there is a potential collision course emerging between my physical need to slow down and my mental need to keep going.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">___</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">* </span><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;"> I have had some periods in my life when the above was not true and I fell into lassitude. Looking back on those times - many decades ago - it is really a miracle that I survived at all. I became very poor and aimless. Even suicide was thought about. So, the present version is much more sustainable.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;">** </span><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;">Alexithymia is the inability to identify one’s own emotions.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;">*** </span><span style="font-family: Arial; font-size: 10pt; white-space: pre-wrap;">Interoception is the ability to perceive what is happening inside one’s body. Many autistic people, myself included, experience difficulties with this sense. </span></p></span><br class="Apple-interchange-newline" /><br class="Apple-interchange-newline" />Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-82452799174877336462021-12-20T11:22:00.011+00:002021-12-20T11:29:07.073+00:00Navigating awkward situations<p><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">Christmas is coming, that time of year when social interaction is not just encouraged but required. From an autistic point of view, it is challenging, <a href="https://www.autisticprofessor.uk/2021/01/christmas.html">as I have mentioned before</a>.</span></p><span id="docs-internal-guid-ab2283a8-7fff-03c8-fbe8-fa1d19e43815"><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">I’ve been reflecting recently on the strategies I use to navigate awkward situations. These situations mainly occur at work. In general, I can manage them because there are rules of engagement for academics, such as disagreeing without it becoming personal (“disputation”, as it was once called). However, those rules do get broken and sometimes situations become highly charged and even personal too. </span><br /><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I have three approaches to any interaction: silence, scripting, or casual. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Silence occurs when I find myself confronted by complete unpredictability (for example being approached by a stranger, or too many people all at once). In such situations, I can get quickly overwhelmed. It is mostly involuntary. I don't choose to be silent - silence chooses me.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Scripting involves anticipating every likely path a meeting might take and being ready with a response. It’s like branching literature, or computer code. I find myself “reading” the dialogue in my mind as if it were written on the pages of a book, complete with “he said/she said”s. I was talking to a colleague the other day, who commented that I seemed to have anticipated every possible way in which the conversation could go. This was scripting in action. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Casual interaction can only happen if it follows the pattern of something I have experienced before. Since I am now of fairly advanced years, many situations fall into this category. Even so, things can quickly shake me out of casual mode. Sometimes just the question “how are you?” leaves me floored, especially if I don’t know the person I am speaking to. I never really know how I am. I also know that people who ask that question do not really want to know how I am. It’s a minefield!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Whichever mode I adopt, there is always a possibility that a situation could take an unexpected turn. This can be very difficult to deal with. To try to manage these more awkward situations I have spent a lot of time over the years studying strategies. I read books of theory so that I can at least give the appearance of understanding what is going on. I can’t pretend that this approach is always successful, but I do try hard. Let me give two examples.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Back in the 1980s, Gavin Kennedy wrote a terrific book called </span><a href="https://www.amazon.co.uk/Everything-Negotiable-4th-Gavin-Kennedy/dp/1847940013/ref=asc_df_1847940013/?tag=googshopuk-21&linkCode=df0&hvadid=310843183616&hvpos=&hvnetw=g&hvrand=17484726426244499028&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1006917&hvtargid=pla-452471891493&psc=1&th=1&psc=1" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Everything Is Negotiable</span></a><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">subtitled “how to negotiate and win”. I have not used it much for getting deals, as it intends, but I have deployed some of its principles in other situations. For example, there is a technique called “the Lazarus shuffle” in which you refer to someone who is not present in order to apply leverage. I have used that many times and it is often successful. The advantage of an absent authoritative figure is that they cannot easily be challenged. At the very least, you can achieve a delayed resolution with this technique.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Another idea I have studied and used many times is Bruce Tuckman’s </span><a href="https://web.mit.edu/curhan/www/docs/Articles/15341_Readings/Group_Dynamics/Tuckman_1965_Developmental_sequence_in_small_groups.pdf" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">theory of group formation</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, which basically goes: forming, storming, norming, performing. I am currently experiencing this scenario in an academic setting and, once again, it is proving to be incredibly accurate. It really helps my autism to be able to analyse the situation when we reach the “storming” phase. That way, I can avoid getting too distressed by the fraught social interactions taking place. It fulfils a similar function to being able to see photographs of a place before I visit, rendering it more predictably familiar and so reducing anxiety.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Now, of course, anybody could use these kinds of theories.There’s nothing particularly special about the fact that I do this. However, I think it is the rigour and consistency with which I apply them that is the autistic part. It is my attention to detail and awareness of how interactions conform to these patterns that sets me apart. I see similarities with chess: being able to anticipate moves and combinations of moves and being able to respond accordingly. Without some kind of “manual” of neurotypical behaviour like this, I would be completely lost.</span></p><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-64859065915964441972021-10-26T10:39:00.020+01:002021-10-26T11:00:34.301+01:00Some more thoughts about music<p>Last year I wrote <a href="https://www.autisticprofessor.uk/2020/06/some-thoughts-about-music.html" target="_blank">a post about music</a> in which I described how my listening has been affected by my autism. I recently composed a new set of seven pieces in response to a commission from the BBC, called '<a href="https://andrewhugill.com/spectrumsounds/" target="_blank">Spectrum Sounds</a>'. These were my first compositions <i>about </i>my autism, rather than just a product of it. Now that the pieces have been <a href="https://andrewhugill.com/spectrumsounds/sounds/New%20Music%20Show%20050821%20Spectrum%20Sounds.wav" target="_blank">broadcast on Radio 3</a> and <a href="https://www.bbc.co.uk/taster/pilots/spectrum-sounds" target="_blank">published</a> on the BBCR&D's innovative 'Audio Orchestrator' platform, I have had an opportunity to reflect on what I have learned as an autistic composer. There are three main takeaways: the persistence of synaesthesia; the differences between collaborating with autistic musicians and non-autistic musicians; and a question: who is this music <i>for?</i></p><p>Before discussing these, I should note that the "spectrum" in the title is the colour spectrum rather than the autistic spectrum, although there are obvious echoes of the latter. The pieces were also very much about my hearing loss (thanks to <a href="https://andrewhugill.com/HugillMDandme.pdf" target="_blank">Ménière's</a>), but I will not focus on that aspect in this blog post. However, it is worth noting that each piece is only a few minutes long because I find it difficult to listen for longer than that. Each piece is associated with a colour from the spectrum and features a different musician.</p><p><u>The persistence of synaesthesia</u></p><p>During the composition of the yellow piece, I had a sudden moment of memory that I had done this before. I went rummaging in a cupboard and found an old score that I had written in my teens, entitled 'A World in Yellow'. This was for the unlikely combination of four harmoniums and voice, which more or less guaranteed it would never be performed. When I looked at the score, I found my head flooded with yellow once again, just as vividly as it must have done all those decades ago.</p><p>This showed me an interesting facet of synaesthesia (which is a confusion of the senses): its persistence. In my case, certain associations between certain colours and certain sounds formed in my youth and have never left me. An open E string on the violin is strongly red, for example, and a high F sharp on a trumpet is blue. As you can tell, I did try to grapple with this during my formative years, but eventually gave up trying because it was so unscientific, arbitrary and apparently pointless to do so. </p><p>I'm not the only composer to have been synaesthetic. Amy Beach, Alexander Scriabin, and Olivier Messiaen are all famous examples and there have been many more. Those people were often quite systematic about their synaesthesia, whereas mine has always been a bit rough and ready by comparison. But it is no less intense for that. It also affects taste and smell to some extent. I can remember avoiding the Bakerloo line when I lived in London because the brown colour on the tube map gave me sensation that combined with the smell of bakelite (the word was obviously the source of this association) and a disgusting taste that made the whole idea of stepping on to that line revolting. Now, I could have overcome this if I really wanted to, but it was easier just to avoid the whole thing.</p><p>During my musical career, I have listened past the synaesthesia in a similar way, trying to ignore the colour sensations I was getting when listening. It has been refreshing to revisit this aspect of myself and give it renewed consideration. </p><p><u>Autistic vs. non-autistic musicians</u></p><p>All six of the musicians I worked with were wonderful (the green piece was played by myself - green has always been my favourite colour). On a musical level, they were equally rewarding to work with. Three are autistic, and two have severe to profound hearing loss, while one is not autistic and has "normal" hearing. Some musicians needed a musical score to play, while at the other extreme one did not read music at all and worked from written verbal instructions. In some cases there was more of a compositional aspect to the collaboration than others, for example, two of the musicians worked on producing their own sounds in response to my instructions, which I then reworked to make the finished piece.</p><p>The things I noticed about the autistic musicians as opposed to the neurotypical musicians were the very rapid understanding and the mostly non-verbal nature of the communication. We would talk very little, and yet these musicians would quickly produce something that matched my intentions. I find this fascinating and observe that it mirrors my experience of everyday interactions. In general, I seem to get an instant communication with other autistic people, whereas with neurotypicals it can be difficult, even impossible, to achieve a rapport.</p><p>I was in a meeting recently during which the mother of a non-verbal autistic son told me that my brain works exactly the same as his. This confirmed something I have long suspected, that the autistic "wiring" exists independently of standard communication methods and carries a deep level of mutual understanding.</p><p><u>Who is this music <i>for?</i></u></p><p>This is a hardy perennial question for composers, and can lead to some creatively inhibiting internal arguments if you dwell on it too much. But in this case, it really did get me thinking. Several years ago, I submitted some of my compositions that dealt with my hearing issues to a journal which publishes artworks as well as academic papers. They rejected it, and in explaining the reasons the editor wrote to me as follows:</p><p>>>I would suggest to look at [the reviewers'] opinions not as resulting from some form of deficit but from a genuine position where they couldn’t see or hear what you are seeing or hearing - what’s clear to you isn’t translating well enough, and this is where some of the necessary work of articulation might lie.<<</p><p>This really sums up the problem. If you write for and about yourself, there is of course no guarantee that people will understand what emerges. I assign each piece a colour of the spectrum, but of course the vast majority of listeners will not experience those colours, and even those who <i>are </i>synaesthetes will not necessarily have the same associations as me. </p><p>This is really the autistic condition. We are permanently in the situation of seeing or hearing things which others do not, and finding it challenging to communicate those perceptions. Furthermore, this cuts both ways: the rest of the world does not communicate itself well to us either! This editor made the rather ableist assertion that the problem lies with me. I can resist that as much as I like, but when it comes to writing music which I hope others will enjoy, then it remains a problem. The 'Spectrum Sounds' pieces are as authentically <i>me </i>as it is possible to get, something that is not true of all my compositions. As such, the pieces still stand and I hope will find an audience anyway.</p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-60854047836208514312021-09-05T15:33:00.002+01:002021-09-05T15:37:56.274+01:00My thoughts on Spectrum 10k.<span style="font-size: medium;">It’s been a busy few weeks, what with <a href="https://auraldiversity.org/workshop1.html">the first Aural Diversity workshop</a> and the broadcast of my ‘Spectrum Sounds’ pieces by the BBC (you can hear three of them at <a href="https://www.bbc.co.uk/sounds/play/m000zch2">https://www.bbc.co.uk/sounds/play/m000zch2</a> starting at 42' 06"). I’ve been aware of the <a href="https://spectrum10k.org">Spectrum10K</a> controversy, of course, but decided to pay it no attention until these significant events were in the past. So I have only now had a chance to sit down and take a proper look at the proposition. </span><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">Spoiler alert! I won’t be taking part. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">I should state from the outset that I am strongly in favour of science (I am an academic at a university after all) and I am by no means against genetic research. In fact, I can really see the potential for genetics to treat Meniere’s, for example. I don't believe in conspiracy theories and I am not easily swayed by majority opinions. I’m quite happy to be anomalous if necessary. Having said that, I am not naive about science either. Just because something is scientific doesn’t necessarily make it good. Let’s not forget that it was “The Lancet”, no less, that published that awful paper linking autism with vaccines (I wont put the name of the scientist in print). Some of the most wrong-headed, poor quality and destructive ideas have been promulgated under the guise of scientific research. That doesn’t make science a bad thing. It just means we have to improve our quality mechanisms. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">I am also very familiar with evaluating scientific proposals, having considered hundreds, even thousands, as part of my work for the EU and other scientific committees. I am not an autism researcher and I know little about genetics, but I still consider myself able to make a reasonably objective evaluation of the merits of any project. However, in this case I am at a disadvantage. Normally I would have access to the full proposal, giving the aims and objectives, methodology, state of the art, full backgrounds of all the investigators, etc. Since I have no sight of these, my evaluation of Spectrum 10K is based purely on the same public information and PR campaign that has been given to everyone else.
</span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">Spectrum 10k wants me to send them my DNA by spitting into a test-tube and to give them access to my medical records. The reasons are fairly clear on one level: they want to create an enormous database on which future genetics research may be based. On another level, the reasons are pretty unclear. For example, in relation to the access to medical records they state: “One of the aims of Spectrum 10k is to identify factors that contribute to co-occurring physical and mental health conditions in autistic individuals”, which seems quite vague. I may only speculate that there will be a correlative study made between the co-occurring conditions and the genetic markers, but there is insufficient description of the methodology to be sure of this. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">The central problem with Spectrum 10k is one of trust. They state unequivocally that they are against eugenics. Of course they are. But there is a well-founded fear that, once the database has been assembled, it could be put to uses other than those intended at the outset. Why is this fear “well-founded”? It’s partly a matter of historical fact. One only has to read Steve Silberman’s ‘Neurotribes’ to understand the history of abuse and medically-justified torture (even murder) to which autistic people have been subjected, and indeed still are being subjected in some places. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">To try to understand the Spectrum 10k proposition better, I watched <a href="https://youtu.be/7fuTPFMj1lA">this video</a> of a lecture about ASD genetics by one of the Co-Investigators, Dr Dan Geschwind of the UCLA Centre for Autism Research and Treatment. He explains that the aims of precision medicine are to create a personalised treatment for every individual. As he states: "Everybody will have their genome done at some point in the future". The lecture starts out talking about cancer, enthusing about the successes and potential of genetic research to target cancers in individuals. It then moves on to autism. The message is perfectly clear: autism, just like cancer, may be eradicated if the c.500 genetic markers can be accurately identified and modified. He states: "if we know the mechanism of mutation, then we can prevent it" (10’ 26”). He uses the phrase "cure the autism" (10’ 58”) and refers repeatedly to the “risk of autism”. He says “it would be great if we had something analogous to the killing of dividing cells [in cancer] for autism” (19’ 51”). If you treat autism as a disease, then of course you will seek to prevent it or cure it. But I am not diseased by autism and I don’t believe other autistic people are either. We are just a different neurotype and one that has a right to exist. What we need is social acceptance and a better environment to live in. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">There is another aspect of Spectrum 10K that I find highly problematic. The website states: “Spectrum 10K aims to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families”. Well now, the “environmental factors” are of far greater interest to me (and, I suspect, the vast majority of autistic people) than genetics. So, I eagerly combed the website looking for an indication of how the environmental factors would be investigated. What are the research questions? What is the methodology? What are the anticipated outcomes? Any hypotheses? Any initial frame of reference? Any planned surveys, or experiments, or even consultations? I searched in vain. There is almost no discussion of this all-important area, as far as I can see. This absence of context is further emphasized by the membership of the research team, who are all geneticists, and the advisory panel which, we are told, exists, but whose members are unnamed. This does not inspire confidence.</span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">And that is the fundamental problem. To be able to engage 10,000 people in an enormous research project like this, there has to be a sense of community involvement. People need to be carried along, to be convinced, to be able to see the benefits for themselves and others they care about, to be able to explain the rationale for the research. They cannot be expected simply to take things on trust because a lot of important people say that it has to be this way. </span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;">The project seems to be on the back foot now. The National Autistic Society has revealed that they declined to take part and there have been petitions and letters and a social media campaign against it. A new statement was published yesterday acknowledging the problems and protesting good intentions. This appears to redirect Spectrum 10k somewhat towards the co-occurring conditions more than autism itself. This is certainly a more positive message. It could greatly improve lives if, for example, commonly occurring physical problems that disproportionately affect autistic people could be more effectively treated. But that still seems to be an afterthought and not the main aim of Spectrum 10k. While I am always open to being convinced to change my opinions by sustained and reasoned arguments supported by evidence, at time of writing I’m afraid my objections remain.
</span></div>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-31264481403417896862021-07-11T16:16:00.004+01:002021-07-11T16:18:46.535+01:00How can neurodivergent artists market themselves?<p style="text-align: center;"><i> "<span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">How can neurodivergent artists market themselves"?</span></i></p><span id="docs-internal-guid-55569c7f-7fff-35f4-4f0d-ba5e120e8287"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This was a question I was asked during a webinar entitled ‘</span><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Neurodivergent artists and practitioners discuss how they work with digital’ last week. </span><a href="https://www.thespace.org/" style="text-decoration: none;"><span face="Calibri, sans-serif" style="color: #1155cc; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Space</span></a><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, the BBC’s digital agency, had invited me to speak because of my recent commission for ‘</span><a href="https://www.andrewhugill.com/spectrumsounds/" style="text-decoration: none;"><span face="Calibri, sans-serif" style="color: #1155cc; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Spectrum Sounds</span></a><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">’ which will be broadcast later in the year.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Autism does present real challenges in this respect and I found myself giving a fairly downbeat answer. Reflecting on my compositional life, I realised that many of my contemporaries have carved out pretty successful careers, winning frequent commissions, prizes, recording and publishing contracts, broadcasts, and generally being talked about and listened to. My compositional career has been less obviously successful by comparison.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Why might that be? One possibility is that my music is not as good as theirs, but I would counter that argument with the evidence of all the fantastic reviews and comments I get whenever something is performed or broadcast. The most common epithet used to describe my music is “beautiful”, which can’t be too bad, right? I mean no disrespect to my friends and fellow composers now in their 60s when I say that my music stands alongside theirs perfectly well.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">No, I think the real problem has been my almost pathological inability to “network” and “self-promote”. Funnily enough, I wrote about the importance of this in my book ‘The Digital Musician’, but I realise that I am lousy at practising what I preach, at least in this department. I’ve never set much store by fame, nor have I ever expected to make any significant money from composing, but I </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">have </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">wanted to communicate and express myself through music. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I remember when </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Island Symphony </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">premiered in 1995, a senior figure in the musical world declared it was “brilliant” and “a very important composition”. Then he said: “now what you have to do is to convince everyone else of its importance”. At that point, I realised that I had no hope of doing so. I simply lack the social and networking skills for that kind of endeavour. </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Island Symphony </span><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">has a small and enthusiastic fan club, but it remains largely unknown, I think.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is a facet of autism, I’m afraid. The whole system of marketing and self-promotion depends on one’s ability to get out there and talk to the people that matter. To be a presence on the scene. To indulge in the kind of back-slapping and mutual praise that makes the wheels turn. Performers rely on composers having reputations that will advance their own careers. Composers rely on commissions from organisations that can invest in them and expect a worthwhile return. Record companies and publishing houses are completely driven by marketing, of course. And then there are competitions, which form the life-blood of contemporary music these days. Panels of respected judges select works from a pool. What guides their choices? Some notions of musical excellence, no doubt, but these are surely shaped in no small measure by the reputations that precede people. Even judged anonymously, one can sense a zeitgeist in contemporary music that shapes opinion. If you do not make your presence felt, then you are not part of that zeitgeist. How do you make your presence felt? Through social interaction.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">What can autistic people do about this? It requires constant presence. You have to be seen and mingling, so that when opportunities arise people think of you. You have to be visible, both online and offline, on the arts scene. How can you do this if social interaction is a challenge? I honestly don’t know. Some people say: get an agent. But that involves having constant and ongoing social interactions with the agent. Not to mention finding one in the first place. No doubt if you can get the right agent it will be great. But what happens if you get the wrong one? </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I do have something positive to say, though. Times are changing. There seems to be a new willingness to listen or to try to understand or include neurodivergent people. The Arts Council has woken up to this, but I also think wider society is engaging too. When I was young, there were very few people who identified as autistic. Now there are at least 700,000 in the UK. Many of those are working in music and the arts. It is hard to ignore so many people. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I won the commission for Spectrum Sounds by entering a competition. That is only the third time in my life that I have submitted an application to a call like that. I would not have done so, were it not for some kind people at the Attenborough Arts Centre who pushed me into it. Of course, I am pleased to have won the commission (although still rather anxious about those who applied and were not successful). It has brought me back to composing in ways which are very rewarding for me, following my hearing loss. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">But I wonder what would have happened if the BBC, for example, had taken more of an interest in my work all along. I received several BBC commissions back in the 1980/1990s, but then they fell away. Because of my inability to network, I have never attempted to engage in any of the contemporary music festivals that run annually. Nor have I tried to get involved with performers unless they specifically asked me for something, or I could pay them from some commission money. Once I have a commission, I do hire people and pay well, but the commissions are few and far between. I’ve never had any idea how to approach a publishing house or a record company.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span face="Calibri, sans-serif" style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">What’s great now is to see some young autistic composers breaking through and supporting one another. I saw it at the Sound Festival in Aberdeen recently, and I am seeing it around the place more and more. I wish them all the best and look forward to seeing the fruits of this societal shift that is going on. The increase in diversity in contemporary music can only be a good thing, in my opinion, and is long overdue.</span></p></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-33398253292973247042021-06-27T16:51:00.014+01:002021-06-27T17:09:46.043+01:00Mind v. Body: Autism v. Ménière's<p><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">Back in 2009, I was diagnosed with Ménière’s Disease. I’d been experiencing the classic symptoms for a couple of years before that: powerful rotational vertigo; tinnitus; hearing loss; aural fullness. Ménière’s is notoriously difficult to diagnose accurately, but eventually it became clear that my symptoms were very typical and an expert ENT consultant was able to make the diagnosis and then prescribe treatments. I ended up having gentamicin injections, a kind of chemical labyrinthectomy, which were pretty effective at stopping the vertigo. My hearing loss is severe, and the tinnitus remains, and I still have balance problems. Needless to say, any Ménière’s patient also suffers from anxiety, usually brought on by the unpredictability of the condition.</span></p><span id="docs-internal-guid-8b43df02-7fff-a645-c1a4-84830ad49897"><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">The thing about Ménière’s is that it is a measurable set of physical symptoms. Standard audiometric tests can produce diagrammatic representations of the hearing loss. Balance tests and observations of nystagmus (rapid eye movements) can establish beyond doubt the presence of a vestibular disorder. Even tinnitus can be measured to some extent, based on clinical interviews. This is a set of symptoms that clearly exist in the body, originating in the inner ear but then with consequences for the whole vestibular and hearing system. </span></span><div><span><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;"><br /></span></span></div><div><span><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">However, many of the symptoms of Ménière’s, and indeed vestibular migraine, also overlap with autistic characteristics. Sensory issues, such as sensitivity to sound or bright lights or certain kinds of patterns, are typical of both. Anxiety is common in both. And a vertigo attack greatly resembles a meltdown/shutdown. The way of dealing with these is pretty much the same in both cases: leave the person alone in a low-stimulus environment with some pre-agreed objects and an opportunity to sleep it off. What happens afterwards is also similar: brain fog, shame or embarrassment, sometimes self-destructive thoughts.</span><br /><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It has been surprising to me how many autistic people I know also have a Ménière’s diagnosis. There are famous examples too, of whom Chris Packham is the most notable. I have found myself wondering a lot over the past couple of years to what extent these are connected. An ENT consultant I know speculates that </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">migraineurs</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> (people who have migraines) are an advanced form of human being whose extra sensitivities were a decisive advantage during the evolutionary phase of </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">homo sapiens</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, but are now a disadvantage in the modern world. This sounds a lot like theories of autism as an advanced form of brain evolution. They may or may not be true, but the theoretical parallels are remarkable.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The question in my mind is: where is the boundary between my Ménière’s and my autism? This seems to be a body versus mind question, because Ménière’s is physical with consequences for the mind, whereas autism is neurological with consequences for the body. An autism diagnosis is easy to doubt, as we all know, because the symptomatic outcomes do not obviously point to an underlying physical reality (this is presumably what genetics research is trying to investigate). Yet it is quite clear to me that certain aspects of myself, especially those that have been in evidence since early childhood, cannot be explained by anything other than autism. But there is a grey area of overlap in which it is less clear what might be autism and what might be Ménière’s.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Let’s consider a concrete example. Several years ago, my wife and I went on holiday to the Arctic Circle, flying into Tromsø one dark, cold night to board a ship sailing down the Norwegian coast. This involved going through an airport, one of the most challenging environments for me as an autistic person. This was a few years before my autism diagnosis though. My wife supported me throughout, knowing the difficulties I usually have in airports.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">While we were waiting at the boarding gate, I had an attack. I started sweating, the vertigo came on, and I staggered to the toilet expecting to vomit. Nothing happened though, and after a time my wife called me to say that the plane was leaving and we needed to decide whether to board it or not. I still felt terrible, but I decided to press on and staggered down the boarding channel to my seat, where I took out the sick bag and sat throughout the flight with my head in my hands. After an hour, though, I felt much better and we arrived in Tromsø just fine. I had some lingering brain fog but was otherwise able to function well enough.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Looking back on this incident (and I’ve had so many like that over the years) I question what was really going on? Perhaps my lunch had been too salty, but I doubt it. Was this in fact nothing to do with Ménière’s, but rather a shutdown or a panic attack brought on by my autistic response to the airport environment? That is certainly the way I would understand it now. The “vertigo” was qualitatively different to attacks I had had years before. The spinning was not so pronounced and was more a general sense of loss of proprioception. My hearing did not change either, which used to happen during a Ménière’s attack. No, this seems more like the kind of shutdown I used to experience long before the Ménière’s diagnosis. On this occasion, I could only understand it in terms of Ménière’s, but now I think that autism was probably a more likely cause.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Or was it, in fact, a combination of the two? Was autism creating the shutdown, but the body’s response was that of a </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">migraineur </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">or a Ménière’s sufferer? Or was it an overload of anxiety, coming from my response to the airport but connecting with autism somehow by building on anxieties around travel, change and the unknown? My wife was with me, which was great for my support, but I also felt responsible for her too. I wanted to make sure she was happy and having a good time. Perhaps the extra responsibility contributed to the psychological pressure?</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">So, how best to investigate whether there is any overlap between Ménière’s and autism? What is needed here is some transdisciplinary research. To achieve a more holistic understanding of the possible overlaps and relationships between these conditions requires researchers who are capable of overcoming disciplinary limits. I myself do not have the necessary expertise in either field, but I am sure there are people who could explore this further. The conclusion may be that there is no connection beyond symptomatic similarities. But even the process of investigation could have value in challenging the mind/body distinction that pervades medical and psychological research.</span></p></span><br class="Apple-interchange-newline" /></div>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-72976212060727866112021-06-02T18:26:00.001+01:002021-06-02T18:26:32.439+01:00Some thoughts following the Interdisciplinary Autism Research Festival (IARF2021)<p>A couple of weeks ago I spent the best part of three days attending the first Interdisciplinary Autism Research Festival. This was a wonderful event, during which I experienced the rare thrill of encountering an entire community of creative people and academics whose brains are wired the same way as mine. </p><p>It would be both invidious and impossible to try to summarise or critique all the presentations. I managed to attend roughly half (there were two parallel tracks) and found myself impressed by the quality throughout. Every presentation had something special to offer and to single anyone out would give the false impression that there were “highlights”. So, I will restrict myself to describing some general thoughts that have arisen since the event. I needed a week or two to process everything in order to arrive at these comments. Even so, they are very much in formation still, and will doubtless evolve further over time. I just wanted to set them out now before the memories fade.</p><p>I should say at this point that I am not an autism researcher. My fields are music and computing (and ‘pataphysics, but that’s a whole other discussion). But I am experienced in interdisciplinary research, having directed a large research institute that sat at the intersection of technology, social science and the arts/humanities, and founded interdisciplinary subject areas, most recently Creative Computing. </p><p>The IARF was inspired by the artistically-driven <a href="https://flowunlocked.co.uk">FlowUnlocked</a> project and was part of the Wellcome Trust-funded project ‘<a href="https://wellcome.org/grant-funding/people-and-projects/grants-awarded/remembering-what-truly-matters-nature-culture-and" target="_blank">Remembering what really matters’: Nature, Culture and Autism</a>”. The disciplines represented in the festival included (in no particular order): autism research, psychology, cognitive neuroscience, education, health, disability studies, gender studies, philosophy, politics, linguistics, literature and creative arts (e.g. dance, music, visual arts, performance, animation, photography, graphic design, theatre). There was also a healthy sprinkling of activism, consultancy, community engagement and probably several other important areas that I have missed. Such a superfluity of perspectives provided a very healthy intellectual ecosystem for the kind of discoveries of connections and differences that are essential to the emergence of new, hybrid disciplines. The fact that so many of the participants were united by a shared neurotype meant that one could observe the rapid formation of such an interdiscipline in real time.</p><p>There are three main types of cross-disciplinary collaboration: multidisciplinary, in which teams of researchers from different disciplines assemble to address a common problem; transdisciplinary, in which researchers exist beyond, across and above all disciplines; and interdisciplinary, in which the methodologies of one discipline are used by another. The IARF fell largely into the last camp, with a great deal of methodological cross-fertilisation between mainly quantitative disciplines such as neuroscience and mainly qualitative ones, such as the creative arts. Indeed, one recurring fault-line for the whole festival was an autistic take on the ancient debate between positivism and phenomenology. As usual in such discussions, the consensus was in favour of a mixed-methods approach. But what was unusual was the extent of the consequences for the individuals concerned of an inflexible insistence on one or the other. This was really a theme: the courage and determination of individual researchers and/or artists fighting for an autistic vision within an intolerant culture which insists on a methodological approach that constantly reinforces an outdated and harmful set of stereotypes.</p><p>The sense of assertiveness and fellow-feeling that this generated was accompanied by some classic signs of the emerging form of a new interdiscipline. A key area for discussion was jargon, which is always a major concern of communities of scholars as they try to establish boundaries for their field. In this case, participants were actively discouraged from using certain words which evoked rejected forms of research. Other terminologies were debated at length. </p><p>So, this is an exciting time for the community of interdisciplinary autistic researchers. The new field is in formation in front of our eyes, and is ours to shape and develop as we see fit. It has great potential, and it is wonderful to see practice-based artistic research being included and treated as equivalent to more traditionally 'academic' disciplines. Bruce Tuckman’s classic model for group formation is “forming - storming - norming - performing’. So far, I have seen nothing but forming. Perhaps this will be one group that resists that rather neurotypical sequence by skipping past the “storming” and “norming” steps and heading straight from “forming” to “performing”. Certainly, the level of direct communication between participants would suggest that this is very possible. </p><p><br /></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-74716558953858041932021-05-08T15:45:00.010+01:002021-05-08T15:59:22.583+01:00"Positive psychoeducation" and ableism in academia<p><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">There has been quite a lot of discussion in academia recently about using “positive psychoeducation” to address the mental health crisis in students. The most headline-grabbing example of this is a module, offered at the University of Bristol, entitled ‘</span><span style="color: #2b00fe;"><a href="https://www.theguardian.com/education/2021/mar/24/bristol-university-happiness-course-students-found-to-be-more-upbeat" style="text-decoration: none;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Science of Happiness</span></a><a href="https://www.acu.ac.uk/the-acu-review/lessons-in-happiness/" style="text-decoration: none;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">’</span></a></span><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. Here’s a </span><a href="https://www.youtube.com/watch?v=cd4k4Uyyijw&t=17s" style="text-decoration: none;"><span style="color: #2b00fe; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">video</span></a><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> about it.</span></p><span id="docs-internal-guid-03158d09-7fff-abba-d148-47811ed6d6f3"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This clearly has a basis in solid psychological research and is delivered in a novel way which has demonstrably benefitted many of the students who have taken part. The science of happiness is also an intrinsically interesting topic that is relevant to a wide range of disciplines so, on the face of it, this would seem to be a welcome contribution. Surely, anything which improves student wellbeing has to be a good idea, right?</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">When this first came to my attention, alarm bells instantly rang. What would an autistic experience of this module be like? As I investigated further, I realised that my instincts were correct. This doesn’t just present autistic people with some challenges: it is actively ableist in a way which I am sure the authors do not intend. Let me explain.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The research which underpins the course is described in Hood, B, Jelbert, S., and Santos, L. R., </span><a href="https://journals.sagepub.com/doi/full/10.1177/2055102921999291" style="text-decoration: none;"><span style="color: #2b00fe;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">‘Benefits of a psychoeducational happiness course on university student mental well-being both before and during a COVID-19 lockdown’, </span><span style="font-family: Arial; font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Health Psychology Open</span><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"> January-June 2021: 1–12</span></span></a><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">. This sets out both the evidence for benefits, which are significant, and the contents of the module itself. No mention is made of diversity in the paper and when it refers to a “university student”, it obviously means </span><span style="font-family: Arial; font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">any </span><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">university student. In other words, this is a ‘one-size-fits-all’ solution. We learn that:</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-left: 36pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“[…] i</span><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">n order to earn course credit, students had to participate in weekly ‘happiness hubs’ (maximum of 11 meetings total) which were led by a postgraduate student or senior psychology student mentor. During these ‘happiness hub’ meetings, students were encouraged to discuss the course content and to take part in a series of positive psychology interventions (PPIs). […] These interventions involved (1) performing acts of kindness (2) forming social connections (3) savouring an experience, (4) increased exercise, (5) trying to achieve several nights of at least 7 hours sleep, (6) meditation and (7) writing a gratitude letter. […]”.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I’m going to criticise this from an autistic perspective, but I think what I have to say also applies to other disabilities. As a person with Ménière’s, I can see several obstacles to achieving ‘happiness’ in this list. But let’s focus on autism.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Both “(1) performing acts of kindness” and “(2) forming social connections” immediately present a serious problem. The standard diagnostic criteria for autism refer to “deficits in social communication”. I dislike “deficit” language, so I would phrase that differently, but the point remains that social interaction is one of the most challenging areas for autistic people. I cannot imagine approaching a stranger to perform an act of “kindness” (what might that be?) or randomly strike up a conversation. That would take a lot of spoons and most likely be unsatisfactory or even dangerous.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“(3) Savouring an experience” and “(6) meditation” involve opening oneself up to sensory overload. In some circumstances, this may be possible or even desirable, but it would need very careful management. If done wrong, the damage could be considerable. Speaking personally, I find ‘mindfulness’ close to torture. I spend a lot of time and effort trying to avoid mindfulness!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“(5) Trying to achieve several nights of at least 7 hours sleep”. There has been a lot of research into the problems that autistic people have with sleep. The National Autistic Society has published </span><a href="https://www.autism.org.uk/advice-and-guidance/topics/physical-health/sleep" style="text-decoration: none;"><span style="background-color: white; color: #2b00fe; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">some guidance</span></a><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> about this. Obviously, it would be beneficial if everybody could get a good night’s sleep, but we should be realistic about what is possible. Making this a required component of an academic course is more likely to disrupt autistic sleep than encourage it.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“(4) increased exercise” seems relatively uncontroversial, inasmuch as increased exercise is likely to bring health benefits to any human being. Even so, this may not be straightforward. The point is that the many benefits of exercise for autistic people are not exactly the same as those for neurotypical people. This is another aspect of the module that would require careful monitoring, especially if it involves changing routines.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">“(7) writing a gratitude letter”. Well, this may be beneficial to both writer and recipient, but I know that I would find it difficult to write such a letter unless I had a clear reason to be grateful. I would need to understand the social conventions of such a letter. My belief is that you write a gratitude letter when somebody sends you a gift. Beyond that, there seems to be no social convention for writing one, unless you feel a sudden surge of gratitude for some reason. This is unclear and could become quite a stumbling-block.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Overall then, it is the normalising conception of what the students are required to do that is ableist. The proposition is that an autistic person should do what they find most difficult, even impossible, in order to achieve happiness, just because neurotypical people find these things pleasant and easy. The requirement to achieve normalised happiness is likely to have severely negative repercussions. If autistic people are given an opt-out, then that is problematic too, because it will look like they are unable to achieve happiness at all.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">What could be done instead? How about a module that is based on autistic joy? One that actively encourages specific interests. That allows for repetition and embraces stimming. That accepts social isolation and non-standard communication. That removes barriers such as the need to use body language. That develops sensory spaces that autistic people find pleasant. That addresses anxiety by observing and analysing its causes. That reduces demand and translates autistic neurology so that neurotypicals may understand. That accepts autism as a reality rather than problematising it.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Universities are full of autistic staff and students. It is high time that this group be properly included when developing new approaches to wellbeing.</span></p><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-46235487979643732912021-05-05T14:07:00.000+01:002021-05-05T14:07:01.433+01:00Emerging from lockdown<p><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">A year in lockdown has affected everyone in ways which will only become fully apparent over time. There are the immediately obvious issues of mental and physical health, loneliness and grief, which are a sharp reality for many. But beyond those is a profound change in every aspect of human society and culture. Returning to ‘normal’ is not only undesirable, it is actually impossible.</span></p><span id="docs-internal-guid-8f2cd918-7fff-8246-c7b2-a4951710d078"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">From my autistic perspective, one of the biggest changes has to do with ‘masking’, that is: performing or presenting as neurotypical in order to fit into society. I learned to do this as a child and have been doing it ever since, to the point that it is impossible for me to remove ‘the mask’ because I do not understand where it begins and ends. Most of the time, I pass as assured and socially capable. People never see the mask, which is a sign of just how well I have learned to wear it.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Since being professionally identified in 2018, a few close friends/family have commented that I seem to be acting more autistic. This is a complicated thing to unpick, not least because I don’t feel my behaviour has changed much, if at all. It may be that their awareness of the diagnosis makes them see things in me that they did not notice before, or it may be that having acknowledged my autism I am now trying less hard to appear non-autistic, or it may actually be that I am indeed ‘acting more autistic’ or performing my autism in the same way that I used to perform neurotypicality. Probably it’s a combination of all three. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">But this is where the lockdown has had an effect. A year of interacting face to face with very few people is making me forget how to do it. I am losing confidence in my ability to behave appropriately. I have a strong suspicion that, when I do start returning to the neurotypical world, people will notice a difference, not because I am ‘acting more autistic’ but because I am not acting so non-autistic. Eye contact, for example, was something that I did with relative ease before lockdown. Now I am finding it harder to do again, in a way which harks back to childhood. Similarly, my ability to read facial expressions has been compromised both by online interaction and by the wearing of physical masks. When I observe body language on TV or in the street, I am once again starting to struggle with deciphering what it means.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">There have been occasions recently where I have been very aware of echoing back to people the way they are talking to me. It’s something I have always done. In the past, once I have felt confident enough with the person, I can move out of that mode and even redirect the interaction somewhat. But now I have forgotten that skill and will probably come across in ways that are not ideal, just because I am reflecting back the mannerisms of my interlocutor.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It’s not that lockdown is making me more autistic. Autism is a steady-state kind of thing. It’s just that masking requires constant practice and I have always had plenty of opportunities for that over the years. The university recently sent me a request to come to campus when lockdown ends, in order to show prospective students and their parents around our splendid new computer labs. I have to admit I find that prospect very daunting. I am getting anxious about my ability to cope in that kind of social situation. I think I need some less ‘mission-critical’ practice before I start re-engaging with the world in that way.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">In ten days from now my second vaccination (which happened last Saturday) will have given me full protection. Covid is at a low level locally, so there is really nothing to stop me re-emerging into the world. But I am unsure about it. I think some limited forays will be a first step. Perhaps a visit to the office for an hour, maybe with a coffee thrown in, to get familiar again with that environment. Some low-anxiety social interactions with trusted colleagues too. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">During lockdown I have barely been out of the house. I have only visited the chemist once a month to collect my prescription and, on fewer than five occasions, I have gone to the Co-op to buy one or two items. I have always had a shopping list and have entered and exited as quickly as possible. Although the pubs have reopened, at least outside, I have avoided going back there, even though I do enjoy a pint. I have even become reluctant to consider moving house, something that actually would be a good thing because the present place is inadequate in many respects. I think I want to protect myself from the world. I know this has to change, but the anxieties of doing so are considerable.</span></p><br /><br /><br /><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-28689307202278429552021-04-22T09:21:00.008+01:002021-04-22T09:28:12.567+01:00Designing autistic spaces<p><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">One thing that my identification/diagnosis has revealed to me is my mostly unwitting role in designing autistic (or, more precisely, autism-friendly) spaces.</span></p><span id="docs-internal-guid-1b8228d7-7fff-02e9-2ac8-da5c0f8b3915"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">During my academic career, I have often been in the fortunate position of being asked to create spaces. On every occasion, I have been the Director of a Centre or an Institute, or the holder of a large capital grant that has given me the right to dictate how the space should be designed. To give some examples, I have built: two recording studios, a multidisciplinary research lab, a performing arts space, a usability lab, and an enormous institute full of digital technology and experimental equipment. Furthermore, I have frequently been asked to advise on the construction and design of spaces outside the university. Back in 2009, for example, I designed a digital gallery/workspace in a local arts centre, and I have recently been consulted on the design of a laboratory in a science park. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Now, I should stress that I have no qualifications for building and designing spaces. However, I do have some quite strong opinions about how it should be done and since I was “in charge” in these situations, I took some key decisions. What I now realise is that every one of those decisions arose directly from my autism. Of course, I had no idea at the time what was going on!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">In my life, I have always navigated the world by trying to find autism-friendly spaces. So, for example, on arriving in an airport, the first thing I would do is to seek out the multi-faith room. This is generally a quiet space with low-level lighting and low stimulus colours, often wood. It would have a transient population, so there was no real danger of unwanted social interaction (unlike churches, where there is always someone who wants to chat). As a child, at school, I created a “war gaming club”, which had only two members. The reason was that I could then take occupancy of a basement room that was otherwise unused. After a time, it became apparent to the other member that this was really about something other than “war gaming”, so he left. I had a silent room all to myself. There are many more such examples. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">When designing spaces in universities, or elsewhere, my main priority was to control the environment and especially the sound and lighting. All my spaces had the kind of sound-proofing that would be used in noisy industrial spaces. In other words, they were as close to silent as I could get, whether they were recording spaces or not. The colours would be simple - a white, or a pale blue - and uniform. This would extend to the ceiling and even the floor, but with differences in shade or texture making it clear where the boundaries were. This is important for me, because my proprioception requires location points to be able to function. Lighting would be LED and not fluorescent. As with many autistic people, I can see the flickering of fluorescent tubes and find it very disturbing. There would be no irregular patterns, no asymmetrical features, no irrelevant “features”. The spaces needed to be predictable and functionally elegant. They also had to be flexible and have technology built in, including silent air conditioning to remove any smells (again, my autism means that I have always found certain smells intolerable) and moderate the environment to a steady temperature. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Now, when I look at the BBC’s Sensory Environment Checklist </span><a href="https://bbc.github.io/uxd-cognitive/" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://bbc.github.io/uxd-cognitive/</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> I see that these spaces of mine all conformed to those standards. I used them for my personal wellbeing, but what was interesting was how much neurotypical people also liked them. It is often that way: the environmental changes that suit autistic people also suit neurotypicals. Luke Beardon wrote: autism + environment = outcome. I now understand that I have somehow been aware of that formula all my life. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Most recently, a local media/arts centre started talking to me about extending a space that I had designed back in 2009. This is a digital gallery. It is set off from the main area by a corridor, so many people do not go into it. I created a beautiful autism-friendly environment in complete contrast to the bright, buzzy café nearby. It has a floating floor, silent aircon, LED lights, and buff walls that can easily be repainted. Over the years it has hosted many superb exhibitions and installations and the directors of the centre obviously assumed that its purpose was solely digital art. Little did they, or I, realise that it is also a space for autistic people to retreat to when they arrive at the centre. Interestingly, they are now asking my advice once again about how to extend it. This time they are talking to me not because of my academic position or expertise in digital arts so much as my identity as an autistic man. I’ve been very frank with them about the purpose of the space, how it could attract a new autistic audience, what is required of the extension to make its dual purpose clear. We’ll see what actually emerges, but it is a sign of how far we have come that such things are now being openly discussed and in a most positive way.</span></p></span><br class="Apple-interchange-newline" />Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-70702705326152236102021-04-12T10:01:00.002+01:002021-04-12T10:07:41.053+01:00Looking back on lockdown<span id="docs-internal-guid-432fc6b7-7fff-7e2b-ccb5-2a36ee3d181f"><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">Over a year of lockdown has passed, so I thought it would be interesting to reflect on my experiences from an autistic perspective. Needless to say, these are only </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">my </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">experiences. I do not speak for all autistic people, many of whom have had a very different time, as I well know.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">There are many things I like about lockdown. It has made me realise just how challenging it has been to travel into work each day, for example. The sensory issues in commuting alone have drained me far more than I realise. I’ve got used now to ending the day with more spoons, which is a welcome relief. Some days I used to get home from work practically unable to speak or think, or I’d catch the wrong train and end up in Kettering, or some other disaster. Now I end the day tired but relaxed in a familiar environment, which is lovely.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This has meant that I can be somewhat more flexible about routines. Before lockdown, I would follow a very strict sequence of actions every morning in order to conserve spoons for when I arrived at work. So, the morning routine has included the same ordered sequence of washing and ablutions, dressing and eating, packing up my bag and leaving the house, every day for years. My main problem in lockdown has been that Frank Cooper’s Original marmalade, which I eat in Spring and Autumn (Fine Cut in Summer, and Vintage in Winter) seems to be completely unavailable. So I am eating Fine Cut out of season, which is a bit disturbing, but in the grand scheme of things not a major problem.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I generally find social interaction online preferable to face to face. It is entirely predictable and managed. There are no unstructured meetings or casual encounters. Whether it is a management meeting, a class, or just a “zoom coffee”, I know about it in advance. I enjoy that I don’t have to work at reading body language. Again, it has been lockdown that has made me realise how much effort that took every day. People often say that autistic people cannot read body language. I’m not sure that’s entirely true. I spend a large amount of time reading body language, because I understand that it is an important method of communication amongst neurotypicals. I’m not saying that I really understand it, but I am pretty good at spotting details and often notice things that others miss. It does require a lot of effort, though, so it is a great relief not to have to do it.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">However, this absence introduces a new anxiety: have I now lost the skills to be able to decode body language and facial expressions? Those would take an enormous amount of work to rebuild. I have noticed that I am losing the ability to pretend not to be autistic. Now, many people will say that’s a good thing because masking is bad and we should be authentically ourselves. I would not disagree with that point of view, but the problem is that I then lose confidence in my ability to interact socially and start to become anxious about meeting people at all. Over the last few months I have started to get nervous before I meet someone. This is unusual for me and potentially a big problem in my line of work. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">There has been a major downside in interacting online with my students. They simply refuse to switch on their cameras, so I would not recognise any of them if I met them face to face. This is very strange. They know exactly what </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">look like, but to me they are just circles with initials inside. This creates quite a pressure on what will follow when we finally do meet. One other problem with online interaction is automated captions. Because of my hearing impairments, I do rely on these quite a lot. But the error rate is quite high and they can create as many barriers as they remove. An example of technology not being good enough for its intended purpose.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">One benefit of all the extra energy I have saved up is that I have become much more active as an autistic advocate, both at work and in the world at large. Again, I think lockdown has contributed to that development. It has been easier to sign up for things, such as advising the NHS in Birmingham, or giving a presentation about my experiences to an EDI conference at Edinburgh University (both things in my calendar for this month) when I know that I don’t have to travel to a new place, meet people, etc. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My main anxiety at the moment is the end of lockdown. I really do not want it to end. I am not looking forward to going back onto campus with its chance encounters, random events and sensory challenges. My university’s campus is pretty typical. Every building is a mess of flickering fluorescent lights, asymmetrical patterning, haphazard “design”, high arousal colours, confusing signage, noisy spaces, drifting smells, bizarre heating, reflective surfaces, and so on and so on. On the plus side, my office is nice and quiet and hidden away, so I can be fairly surreptitious. If all the buildings were more autism-friendly it wouldn’t be so daunting, but I’m afraid they are pretty horrid. I’m trying to change that through my work on the disability action group, but it is not easy.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Overall, then, I find lockdown quite agreeable, and I am not aware of any negative impact on my mental health - quite the reverse, in fact. But I do have some anxieties and I am noticing some changes in myself. To what extent these will become a major problem remains to be seen. My survival bag, which would never leave my side before lockdown, has now been gathering dust in a corner for over a year. I am going to have to get it out soon and check that everything is fully charged up and up to date, from the noise-cancelling headphones to the personal air purifier, from the sunflower lanyard to the clip-on shades, and so many more bits and pieces that I use to make life tolerable. That will be a big moment!</span></p><br /></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-68728348156129289202021-03-18T10:49:00.005+00:002022-08-25T11:12:29.711+01:00Access Rider<p> <i>I have recently been asked to complete an Access Rider. This is an easy way to communicate your needs to colleagues, employers or organisations, especially in the arts. It was a very interesting exercise. I thought I would share mine with the wider community, in case people are preparing their own and are looking for examples. There are many other examples, along with a template and instructions here <a href="https://weareunlimited.org.uk/resource/creating-your-own-access-rider/" style="color: purple;">https://weareunlimited.org.uk/creating-your-own-access-rider/</a></i></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><span style="font-size: small;">Name<o:p></o:p></span></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><span style="font-size: small;">Andrew Hugill<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><span style="font-size: small;">Intro Paragraph<o:p></o:p></span></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">I am a composer, musicologist, and author. I'm a Professor at the University of Leicester, where I lead the Creative Computing programme. I frequently speak at international conferences and give public lectures.<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">I have three invisible disabilities which affect my work and life: <o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 36pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">1. autism (includes social and sensory issues, but no learning difficulties);<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 36pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">2. severe hearing loss (includes tinnitus and diplacusis);<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 36pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">3. balance disorder (Ménière's Disease).<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 36pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">I often find a typical concert or conference situation overwhelming. Foyers and registration areas, communal break-out spaces, anywhere with strip lighting, unclear signage, background music, unstructured social interactions, reflective surfaces, lots of information, and general hustle and bustle, can cause me to shut down or have a vertigo attack.<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><span style="font-size: small;">My Access Needs<o:p></o:p></span></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I have divided my access needs into Essential and Desirable. Essential needs are those that are completely necessary for me to do anything at all. Desirable are those which I can manage without but which could have negative consequences for my spoons. See the supporting information for an explanation of spoon theory.</span><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><o:p></o:p></span></u></b></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 18pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 18pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">Essential<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpFirst" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">a.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I do not drive, but will travel on public transport.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">b.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">My dietary requirements are: gluten-free, low salt, no caffeine.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">c.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I require disability support in airports.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">d.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I cannot balance in the dark, so some kind of low-level lighting is always necessary.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">e.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I need a dimly lit quiet space to retreat to at any venue (doesn't need to be anything special).<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">f.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I need occasional short breaks to avoid loss of spoons, and I cannot listen to music for long.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">g.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">Speakers at conferences and events must use microphones, or live captioning.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">h.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I must avoid fluorescent lighting, irregular patterns on walls and floors, and spaces with too much information/bustle.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">i.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I must avoid floral perfumes, air fresheners, and other artificial smells.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">j.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I need captions on videos and in live conferencing.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpLast" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">k.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I follow routines, so need to be able to take lunch at 13.00, for example.<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 18pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 18pt;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">Desirable<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpFirst" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">a.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I prefer natural light and spaces with clear edges/corners.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">b.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">Please avoid shining lights directly into my eyes, especially when I'm speaking from a podium.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">c.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I prefer to see in advance pictures or videos of the places I am going, to reduce anxiety.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">d.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I prefer low-arousal room colours (see autism-friendly environments below).<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">e.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I like to have advance warning of any fire alarms or other unpredictable and loud events.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">f.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I prefer there to be no applause (but I can quickly put on noise-cancelling headphones to mitigate this if necessary).<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpMiddle" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">g.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">I lip-read, so prefer to be able to see people's faces when videoconferencing.<o:p></o:p></span></span></p><p class="MsoListParagraphCxSpLast" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm 0cm 0cm 72pt; text-indent: -18pt;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;">h.<span style="font-family: "Times New Roman"; font-stretch: normal; line-height: normal;"> </span></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">Free-flowing "networking" events are very difficult for me. I prefer one-to-one or private contact.<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;">In general, the<span style="color: #0432ff;"> </span></span><span lang="EN"><a href="https://weareunlimited.org.uk/resource/the-social-model-of-disability/" style="color: purple;" target="_blank"><span face="Tahoma, sans-serif" style="color: #0432ff; line-height: 21.466665267944336px;">social model of disability</span></a></span><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"> applies to me very well. The environment disables me more often than my conditions. For that reason, my access needs focus a lot on environmental factors.<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><o:p><span style="text-decoration: none;"><span style="font-size: small;"> </span></span></o:p></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><span style="font-size: small;">Emergency Information<o:p></o:p></span></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">In any emergency, please contact [redacted].<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">In the case of a vertigo attack, please do NOT call an ambulance. Provide a quiet, dimly lit place, with water and a receptacle for vomit, then leave me alone. <o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">In the case of a shutdown, please communicate simply and clearly. Again, find a quiet, dimly lit place and leave me to recover. <o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><br /></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><u><span face="Tahoma, sans-serif" lang="EN" style="line-height: 24.533334732055664px;"><span style="font-size: small;">Supporting Information<o:p></o:p></span></span></u></b></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">An article on Spoon Theory: <o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><span lang="EN"><a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/" style="color: purple;"><span face="Tahoma, sans-serif" style="color: #0432ff; line-height: 21.466665267944336px;">https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/</span></a></span><span face="Tahoma, sans-serif" lang="EN" style="color: #0432ff; line-height: 21.466665267944336px;"><o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">An explanation of the social model of disability:<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><span lang="EN"><span face="Tahoma, sans-serif" style="color: #0432ff; line-height: 21.466665267944336px;"><a href="https://weareunlimited.org.uk/resource/social-model-disability-animation/">https://weareunlimited.org.uk/resource/the-social-model-of-disability/</a></span></span><u><span face="Tahoma, sans-serif" lang="EN" style="color: #eb3395; line-height: 21.466665267944336px;"><o:p></o:p></span></u></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><u><span face="Tahoma, sans-serif" lang="EN" style="color: #eb3395; line-height: 21.466665267944336px;"><o:p><span style="text-decoration: none;"><span style="font-size: small;"> </span></span></o:p></span></u></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 21.466665267944336px;"><span style="font-size: small;">A description of how to create an autism-friendly environment<o:p></o:p></span></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span style="font-size: small;"><span lang="EN"><a href="https://livingautism.com/create-autism-friendly-environment/" style="color: purple;"><span face="Tahoma, sans-serif" style="color: #0432ff; line-height: 21.466665267944336px;">https://livingautism.com/create-autism-friendly-environment/</span></a></span><u><span face="Tahoma, sans-serif" lang="EN" style="color: #0432ff; line-height: 21.466665267944336px;"></span></u><u><span face="Tahoma, sans-serif" lang="EN" style="color: #eb3395; line-height: 21.466665267944336px;"><o:p></o:p></span></u></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><span face="Tahoma, sans-serif" lang="EN" style="line-height: 30.666664123535156px;"><o:p><span style="font-size: small;"> </span></o:p></span></p><p></p><p class="MsoNormal" style="font-family: Arial, sans-serif; font-size: 11pt; line-height: 16.866666793823242px; margin: 0cm;"><b><span face="Tahoma, sans-serif" lang="EN" style="line-height: 18.399999618530273px;"><span style="font-size: small;"> </span></span></b></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-15293528349174337202021-02-12T09:41:00.009+00:002021-02-12T09:54:21.850+00:00Why I don't drive<p> </p><span id="docs-internal-guid-30d97b10-7fff-20c7-0028-cd07f353300c"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">Autistic people can be perfectly good drivers. </span><a href="https://jaacap.org/article/S0890-8567(21)00007-1/fulltext" style="text-decoration: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; text-decoration-skip: none; text-decoration: underline; vertical-align: baseline;">Some recent research</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;"> shows that they are, if anything, safer than non-autistic drivers (with thanks to @AnnMemmott). But I am one of those autistic people who chooses not to drive. The world is a better and safer place without me driving in it!</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I was 26 years of age when it occurred to me that I should learn to drive. I had resisted it at a younger age, explaining away my objection as a deep dislike of cars. In fact, I had a problem with the whole idea of bodies in motion and not knowing exactly where the edges of things are.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">By the time I reached my mid-20s, this became too hard a position to maintain, both to myself and others. I felt that everybody else was driving so I really should learn to do it too. This was a mistake.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I passed my test first-time without a problem. I am extremely good at following rules and giving the appearance of being in control of the situation. Driving seemed to be all about that. I learned the highway code, found out what was expected of me, and performed very well during the test. No problem, right? Wrong!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">First there were the intrusive thoughts. Noticing details all the time. For example, as a passenger I had this habit of memorising number plates. Now as a driver, I was taking my eyes off the road to read the plates. The same went for the patina of paint on road surfaces, the alignment of painted lines, any text on any vehicle (hyperlexia), and a hundred and one other distractions. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Then there was the perturbation created by rule-breaking. Any driver knows that you have to bend rules sometimes for safety’s sake. Some, even most, break rules just because they feel like it! I would notice every infringement but worse I was incapable of breaking rules myself. This was highly dangerous in some situations.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Next was getting overwhelmed at junctions. As I approached the junction, I would start to anticipate it by imagining the various other roads that intersect that junction. I would then imagine the roads connected to those roads and their junctions. And so on and so on until my brain was occupied by an entire map of the local road network. Meanwhile, I was not paying any attention to the vehicles around me.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Another problem was literal interpretations. For example, there used to be a sign at yellow-hatched crossroads that said “enter only when box is clear”. Now I </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">know </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">that that referred to the entire hatched area, but my mind would not get past the idea that each small parallelogram was a tiny box and I should enter each one separately. To overrule this idea was exhausting. I had to try to drive smoothly when my instinct was to stop and start at every box.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Navigation was also always a major problem. I would memorise the route map before setting out (even on very small journeys) but would be unable to cope if the route was changed for some reason. I can remember shutting down on a major road, for example and even deliberately driving the wrong way up a one-way street when I thought that it would get me back onto my envisaged route. Big conflict with rule-breaking there.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Finally, I should mention the overwhelming sensory aspects, with lights, noise, colours, and objects in motion. The combination of these frequently became too much when overlaid on the sense of responsibility for others. This combined with my dislike of unclear borders to complete what was a highly over-stimulating environment. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">To anybody else, it looked as though I was driving just fine, but the truth of the danger of all this was brought home to me when I had a minor accident at a junction. There were suddenly no road markings (I think they were resurfacing) and I found myself completely without rules to follow, at which point the habitual confusion I experienced at any junction took over completely leading to bad decision-making that ignored the physical realities all around me. I’m just glad nobody was hurt.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I gave up driving six months after I started. Several years later, I remarked to my mother that I thought I might take it up again. She shuddered and said “it’s probably best if you don’t do that”. The world is a safer place for that advice!</span></p></span><br class="Apple-interchange-newline" />Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-72220617904464920902021-02-01T16:13:00.003+00:002021-02-01T16:15:27.108+00:00The 'Neurotribes' conference, Sound Festival Scotland.<div><br /></div><div><span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">Yesterday I attended the<a href="https://sound-scotland.co.uk/news/neurotribes-conference" target="_blank"> 'Neurotribes' conference</a> that </span><span style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">was part of the </span><span style="font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;"><a href="https://sound-scotland.co.uk">Sound Festival</a></span><span style="font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;"> in Scotland. </span><span style="background-color: white; color: #222222; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline;">It was really great to see an event like this and it was a pretty interesting and eventful day. Full credit to <a href="https://benlunncomposer.tumblr.com" target="_blank">Ben Lunn</a>, <a href="https://drakemusicscotland.org" target="_blank">Drake Music Scotland</a> and the Sound Festival for staging such an inclusive conference (complete with BSL and live captions). Great efforts were made to enable people to take part and to consider every viewpoint. The day included a concert of music by the neurodivergent composers <a href="http://www.joestollery.com" target="_blank">Joe Stollery</a>, <a href="https://soundcloud.com/benteague" target="_blank">Ben Teague</a>, <a href="https://www.rylangleave.com" target="_blank">Rylan Gleave</a>, <a href="https://benlunncomposer.tumblr.com" target="_blank">Ben Lunn</a>, <a href="https://www.mandy.com/uk/crew/siobhan-dyson-1" target="_blank">Siobhan Dyson</a> and <a href="https://jasonhodgson.com" target="_blank">Jason Hodgson</a>, as well as spoken presentations by each of them. There was a special tribute to the late Lucy Hale in the form of a performance of her piece ‘Snap and Sustain’.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It struck me that this was the first time since my diagnosis three years ago that I have identified as autistic in such a public setting. Consequently, once I started to speak in the final discussion I became surprisingly nervous. There was that familiar “imposter syndrome” feeling that most late-diagnosed autistic people know. Also, I had some things to say that were rooted in personal experience, which always makes me nervous. I’m more used to speaking in academic conferences where nobody is much interested in personal statements.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The day began with a performance, or more accurately a screening, of Siobhan Dyson’s audiovisual piece ‘Listen Carefully’. The great value of this work was its i</span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">nstructive effects for non-autistic, or neurotypical, people. It emerged in the discussion afterwards that they had been strongly affected by this powerful depiction of the way the world is experienced by autistic people. The National Autistic Society and others have tried over the years to convey this in short films or animations, but apparently not with the same force that was achieved by Siobhan Dyson.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It also emerged that several of the autistic people had found the piece overwhelming, as indeed did I. Trigger warnings had been issued, but I foolishly ignored them and tuned in, thinking: it can’t be all that bad. It turned out that such strong depictions of my lived experience are intolerable for me! I lasted under a minute before I was obliged to bail out, on the edge of a shutdown and with my hearing disturbed in the kind of way that normally only happens when I visit the audiologist. I played chess for a while to restore my equilibrium, but the effects lasted all day to some extent. Some friends were concerned about me, which was very considerate of them, and Siobhan herself was clearly very worried that she had upset other autistic people. However, I would argue that it was much more important that the piece was heard by those who needed to hear it. My takeaway lesson is: heed trigger warnings!</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The concert contained some very enjoyable and well written music. Because of my hearing, I cannot listen to music for very long, so I recorded the whole thing and listened to it in batches afterwards. One comment I would make to the organisers: it might have been a good idea to adapt to the online medium a bit more and edit each piece separately to make it available online for asynchronous listening. The format of a ‘concert’ didn’t work so well over the web. But the performances were clearly excellent.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">The stated objective of the conference was </span><span style="font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">to “</span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">bring together promoters, ensembles and composers on the autism spectrum” in order to “discuss the challenges facing composers on the spectrum and explore how to enable greater inclusion and facilitate effective and supportive working relationships”. This really came to the fore during the final discussion, when representatives from several music organisations, performance groups and publishers met with the autistic participants. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">My (quite challenging) contribution was to ask why it is that such organisations always seem to position themselves as the arbiters of what is worthy by having a competitive selection process judged by a panel whenever they call for new works? Could there not be a randomised selection process rather than this constant '<a href="https://weareunlimited.org.uk/reimagining-arts-commissioning/" target="_blank">panning for gold</a>' </span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">(as my friend Ashok Mistry calls it)? Can we not trust audiences and participants to judge what is good or valuable?</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This caused a lot of discussion. If I understood the comments correctly, the neurodivergent people mostly agreed with what I said and felt it resonated strongly. The representatives of the organisations, possibly feeling attacked (which was not my intention) kicked back somewhat, explaining that they are always trying to be inclusive, but that they feel they must support certain individuals or groups, because they have a duty to the artists and have to meet certain requirements. But they also admitted the discussion made them feel uncomfortable. As someone remarked: “unsuccessful applicants may wonder what they have done wrong”. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Speaking from personal experience: that is exactly the problem. I recently wrote <a href="https://www.autisticprofessor.uk/2020/07/getting-it-wrong.html" target="_blank">a blog post</a></span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.autisticprofessor.uk/2020/07/getting-it-wrong.html" target="_blank"> </a>about “getting it wrong” which argued that we often judge ourselves by neurotypical criteria, leading to a diminished sense of self-worth. For an autistic person, who has spent a lifetime trying to understand unwritten rules in an effort to fit into a society which makes no sense, it can be devastating, even traumatising, to be rejected in a way that seems to involve a set of unwritten rules. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Of course, neurotypical people also feel fear of failure, despondency at rejection, and so on. But this commonality should not lead to the classic “we are all a little bit autistic” argument. The autistic experience is completely different and may range from a hyposensitivity in which a rejection is greeted with complete indifference, to hypersensitivity in which it is traumatising. Either way, it chimes with a lifetime of trying to fit into a world which is incomprehensible. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Sometimes, success can be worse than failure, because it is achieved at the expense of others. Autistic people, contrary to received wisdom, are often hyper-empathetic. We think (care) more about the people who were not selected than about our own success. When you get a commission, everybody starts telling you you are marvellous, but all you can think is: why? And once the project is over, everybody stops telling you that, and your response is also: why? In other words, the selection process operates in exactly the same way as day-to-day society. Autistics are constantly trying to operate in a world which is apparently configured to make us fail, and in which any success arises from arbitrary social conventions. Music commissioning mimics that system with its Darwinian selection processes. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">If a random selection process would be too radical, then perhaps a process which is not based on perceived quality, but rather on some kind of clear mechanism, might work. Good and transparent feedback is essential, but is so often lacking. I take the optimistic view that all composers create work that has something good and interesting about it. But, we wouldn’t know that unless we get to hear it! If we assume that there is always insufficient time and resources to hear </span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">everything</span><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">, then some kind of equitable system is the most desirable compromise.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: white; color: #222222; font-family: Arial; font-size: 12pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">So, all in all, this was a successful, stimulating, and sometimes challenging conference which left me with plenty to think about. Despite my nerves and the occasional difficult moments, I’m glad I went and it was very nice to feel that I am still part of the contemporary music scene to some extent. It would be good to see similar events organised elsewhere. There is a lot of interest in engaging with neurodivergent people at the moment, which is terrific, but the process is in its infancy and there is much more to learn about how this might best be done. </span></p></span><br class="Apple-interchange-newline" /></div>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-82610088286344995002021-01-01T13:34:00.005+00:002021-01-01T13:44:19.371+00:00Christmas!<p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I see that several weeks have passed since I last posted a blog entry. This was due to the pressures of the last few weeks of term. Delivering online tuition is great in many ways, but it is also a lot more work, especially in terms of preparation. Added to which, the covid restrictions have created a lot of logistical and administrative challenges which add to the burden. So, I was working extremely hard in the run-up to Christmas.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ah, Christmas! A festival dedicated to sensory overload and unstructured social interactions. What’s to like? Well, in some ways I don't mind Christmas. I understand that it’s a time to draw closer to family and to shut out the darkness with some festivity and light. I also get that once upon a time it was a period of feasting in anticipation of lean cold months ahead. But since I am not a Christian, Christmas itself has little meaning for me. I prefer the winter solstice, which signals something meaningful: the days finally beginning to get longer again. So, secretly, I celebrate that instead.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">From an autistic perspective, the Christmas period can be very challenging.The notion that suddenly the purpose of existence has changed from "doing things" to "joining in" is a source of anxiety. There are a host of unwritten rules that govern behaviour. There are so many sensory issues and so much disruption in the name of “celebration”. It is impossible to avoid Christmas without being “the grinch” (and nobody wants to be the grinch). It’s a social minefield, and the fear of getting things wrong is amplified at this time of year. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Consequently, Christmas Eve at 1 a.m. found me unable to sleep and listening to the '<a href="https://www.bbc.co.uk/programmes/p06sdq0x/episodes/downloads" target="_blank">1800 Seconds on Autism</a>' podcast. I have followed this since the beginning and have found it consistently excellent. I must have been one of the first listeners to 'The unwritten rules of dinnertime', which was posted as Christmas Eve turned. There was so much relatable content in this episode! </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Christmas day itself is supposedly the big occasion, but it can quickly outstay its welcome. And once the day is over, that is not the end of Christmas! It takes weeks to get into Christmas Day and weeks to get out of it. A kind of stupor takes over, characterised by aimlessness. I have been pushing to get started on my new year diet. I do need to lose weight, but more important is to be able to take control of eating and drinking again, to impose structure on the day, to measure and catalogue my food intake.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The giving and receiving of presents is stressful and complicated. How to react in the right way? Also, making the value of the outgoing gift relate appropriately to the incoming one is apparently very important. But ‘value’ is measured on an undisclosed sliding scale of sentimentality, suitability and financial value. It’s the rock-paper-scissors of Christmas, except that working out which trumps which is more or less impossible. Thankfully, my wife handles most of the present giving, so I am very fortunate.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The sensory aspects of Christmas are similarly very difficult. We finally seem to have managed to eliminate tinsel and shiny dirt (aka ‘glitter’) which has made things easier this year. My problem was that they festooned the walls and decor, interrupting my lines of sight of the corners and angles of rooms, distorting my proprioception. We’ve reduced the lighting to just one tree and a window display for outside which is shut behind curtains. The tree has to be artificial. One year my wife insisted that we have a natural tree. Within 24 hours I could barely breathe and the tree had to be relegated to the garden.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The lack of structure of Christmas Day is bewildering. What time do you get up? Once the presents have been opened, it is socially unacceptable to go upstairs and work, so what happens now? How can I meet expectations when I don’t know what they are? My wife found me standing in the living room with my arms folded, paralysed by indecision. Fortunately, she had bought me a Sherlock Holmes Escape Room puzzle book - one of those non-linear, "solve this to advance to page n" challenges - as a present and then allowed me to immerse myself in that for several hours. It was my escape, both literally and metaphorically.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As Robyn Steward pointed out in the podcast, lunch at 4 pm </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: italic; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">is not lunch! </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As always, the meal itself was pretty disappointing after all that preparation. Turkey just is not a very exciting food, and the meal has a certain blandness. Added to which, we have crackers and hats. This year, I’m happy to report the crackers did not bang and contained gin, so they were a great improvement on previous years. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I’ve been reminded of the time a couple of years ago when we visited family at Christmas. The grandson was naturally very excited and we had the whole lot: TV on, lights and smells everywhere, chit-chat all over the place, a strange bedroom, etc. After a couple of hours of this I became overwhelmed and had to retreat to the bedroom where I was able to watch episodes of Big Bang Theory undisturbed. I’ve said before that I understand the representational problems with BBT, but I still find stability in watching the same episodes over and over again. This Christmas, I’ve started watching it again on Netflix from the beginning.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I’ve also started up chess again, somewhat inspired by ‘The Queen’s Gambit’ (another case of a central character who was most likely autistic but this was never mentioned - rightly so, given the time at which it was set). Twenty years ago, I was a pretty good chess player, playing to a reasonably high level in the local club. I’ve decided to revive my rusty skills, starting from the ground up. It’s good to see how the chess world has evolved, with a strong presence on youtube and via lichess. Chess is a structured world in which one has control.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I am typing this on New Year's Day. Christmas was not so bad this year as previous years, thanks to the coronavirus restrictions. It is a shame that something that has caused such misery to so many people should be the thing that brings me relief, but there it is. Even so, it was impossible to avoid Christmas altogether. Now that the worst is over and there is a pleasing prospect of a return to some kind of structured existence, I will end the holiday period by completing a few projects: some scientific reviews, some composition, and reading some books, including those given me as Christmas presents. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 12pt; margin-top: 12pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Happy New Year!</span></p><p><span id="docs-internal-guid-162a78f4-7fff-f86d-30b6-cb1d4e081f43"><br /></span></p>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-41407757666678631212020-10-18T13:32:00.000+01:002020-10-18T13:32:06.946+01:00Interoception<p><span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">I attended <a href="https://autismshow.co.uk" target="_blank">The Autism Show</a>’s web seminars for adults yesterday. It was a pretty interesting day, with some fascinating and heartfelt accounts of people’s experiences. </span></p><span id="docs-internal-guid-dcae4ac3-7fff-c453-37d7-b887a63b665e"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">One thing that came up more than once was “interoception”. This is a sense, alongside the traditional five (sight, hearing, smell, taste and touch) and the one related to balance (vestibular) and the sense of self movement and body position (proprioception). Interoception is simply defined as the sense of the internal state of the body and its processes such as heartbeat, digestion, muscular effort, and anything else that is going on </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">inside. </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Interoception is commonly linked to our sense of wellbeing. In fact, referring back to my last post, it may be the most direct answer to the question: how do you feel? Since I invariably find that a very difficult question to answer, I decided to look more deeply into interception and its relationship with autism. </span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Now, I should say that my vestibular sense is pretty distorted already due to Ménière’s Disease, which I have had since approximately 2007. Also, I have always had a problem with proprioception. This manifests most obviously as a dislike of large spaces whose corners I cannot see, because I use room corners to position myself. But I was most interested in the extent to which interoception overlaps with alexithymia, which is an inability to recognise and describe one’s own emotions. I am often aware that I am experiencing an emotion, but I cannot tell what it is and how it might be expressed. Does this come from distortions in my interoception?</span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I have quickly and superficially surveyed the research literature on this topic. It is quite small - a mere handful of papers - but very interesting. The most useful paper is a review of the field which summarizes the various published studies of autism and interoception (DuBois et al. 2016). This finds that “[...] interoception is an aspect of a sensory processing abnormality found in ASD that has not yet received much clinical or neuroscientific attention” (ibid. p. 108) and calls for more research. One key paper distinguishes between interoceptive </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">accuracy, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">which is objectively measurable, interoceptive </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">sensibility, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">which is a subjective belief about one’s own internal workings, and </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">metacognitive accuracy, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">which is one’s own insight into one’s interoception (Garfinkel et al. 118).</span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It’s clear that this field of research is still developing, so any results are fairly tentative at this stage, but from a purely anecdotal perspective, I would say that my own lived experience tends to confirm their conclusions that there is a difference between these three and that some autistic people experience a “compromised interoceptive channel” (ibid. 123). Well, this one does, at any rate, and so did the majority of the twenty participants in their study. I would say that I have diminished interoceptive accuracy but enhanced interoceptive sensibility, resulting in a dislocation between the two that has consequences for emotional processing. That explains some of the minor but troubling physical problems I have with some body functions and the resulting anxiety that attaches to those.</span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">It makes sense to me that since I have issues in relation to the more familiar senses, I should have similar challenges with regard to this less well-known one too. I’m going to continue researching this, because I think it may become very valuable in trying to figure out ways to self-manage. I don’t hold out much hope that the medical profession will be up to speed on this, but you never know. Perhaps I’ll mention it to my GP next time we have a consultation…</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">References</span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Denise DuBois, Stephanie H. Ameis, Meng-Chuan Lai, Manuel F. Casanova,</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Pushpal Desarkar, ‘Interoception in Autism Spectrum Disorder: A review’. </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Int. J. Devl Neuroscience</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> 52 (2016) 104–111.</span></p><br><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Sarah N. Garfinkel, Claire Tiley, Stephanie O’Keeffe, Neil A. Harrison, Anil K. Seth, Hugo D. Critchley, ‘Discrepancies between dimensions of interoception in autism: Implications for emotion and anxiety’. </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Biological Psychology</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> 114 (2016) 117–126.</span></p><br><br><br></span>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.comtag:blogger.com,1999:blog-2554430743780615041.post-80795697092182112322020-10-11T11:40:00.008+01:002020-10-11T11:44:12.511+01:00Accessible Home Working<div><span style="font-family: arial; font-size: medium;">I was recently asked to comment on a document about accessible home working. The aim of the document was to provide advice to managers and staff about how best to make online working in the university accessible for people with disabilities. It was already a pretty good document, but I like to think I enhanced it with my comments.</span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">There were a few items worth blogging about. The first was to do with good practice in writing emails. Like most academics, I receive hundreds of emails a week. It’s quite surprising to what extent I encounter the same issues in email that I find when dealing with people face to face. I am forever trying to figure out what people really mean, only to discover later that they didn’t really have any particular meaning. I may understand this intellectually, but I find I am unable to recognise it in the moment, so I easily misread or misunderstand the writer’s intentions. I have in the past sent emails that have got me into a lot of trouble, so I am perpetually terrified of making a mistake. At the same time, I still make mistakes! Needless to say, this increases anxiety.</span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">A lot of it has to do with perceived tone of voice. I find that I often ascribe a tone of voice to emails that I perceive as harsh or abrupt. Often this is not the intention, but my anxiety is greatly increased because I get this impression. Usually the impression can be easily offset by a simple change of tone. To give you a simple example, an email that begins “Hi ...” is already more friendly to my ears than one that begins more formally with “Dear ...”. This is probably a result of history. An email seems like a more casual, less considered form of communication than a letter and the use of ‘hi’ seems to acknowledge that, not least because it involves less typing. I’m comfortable with that. If, worse still, an email begins with just my name, or with no initial statement at all, I perceive it as aggressive and I have to struggle to resist that impression from that moment on. </span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">Academics are an argumentative bunch and quite often there are email ‘wars’, some of which are fine because they concern scientific or intellectual disagreements which are generally a good thing in a university. However, there is another kind of war that involves people challenging others (usually management) on quite a personal level. Invariably, these people feel the need to copy in the entire department in order to try to drum up support or, in their view, expose wrongdoing. Sometimes I agree with them, sometimes I don’t, but I always find these kinds of arguments massively anxiety-inducing and never join in. Accusatory discourse shatters the illusion of collegiate working that, however naively, I still like to believe in.</span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">Another line in the document advised: “Be aware that body language and social signals are less easy to interpret via video.” I pointed out that body language and social signals are difficult to interpret at the best of times from an autistic point of view. My suggestion was that people should not even attempt to use body language during a video call, but rather should concentrate on what they are saying and try to avoid statements that are sarcastic, ironic, and so on. It’s possible that video communication could actually be better for many autistic people if that step is taken. Not all of us will feel the same, but I welcome not having to try to decipher endless social cues.</span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">There was a whole section on “keeping in touch” which advised establishing regular “social breaks” in order to help people feel connected to colleagues and avoid social isolation. Now I have mixed feelings about this. On the one hand, I do think it is a good idea for people to stay in contact and sharing does combat isolation. But, and I pointed this out, one of the great benefits of online communication, from an autistic perspective, is the removal of the need to engage in endless “chat” with neurotypicals.</span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">Finally, I attended an online meeting the other day in which the organiser had decided to use an “ice-breaker” exercise (always an odd phrase, that, but I know what they mean). We were asked to indicate (using a ‘pen’ on an online whiteboard) how we were feeling, on a chart which ranged between happy and desperate. This completely threw me, because my alexithymia means I never really know how I am feeling and it takes a great deal of effort to try and figure it out. There was no option on the chart for “I don’t know how I feel”, so the only solution I could come up with was to write that in the chat box. People responded nicely, but I was already far from comfortable with the situation, as they merrily put up coloured crosses to indicate their feelings, had a chat about them, and agreed that this was a great way to start a meeting. For me, the meeting was actually quite spoiled, because I spent the rest of it thinking about the exercise rather than concentrating on the business in hand. So the metaphorical ice expanded and hardened for me. And in any case, probably the straightforward answer to the question “how do you feel” is the one proposed to me by an autistic friend: “with my fingers”! </span></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><br /></span><span style="font-family: arial;">There is a lot more that could be said about accessible home working. But I am very pleased that the university is taking this so seriously and involving autistic people directly in the formulation of advice and policy.</span></span></div>Autistic_Profhttp://www.blogger.com/profile/15807896497056745121noreply@blogger.com