Awaydays, and how to include autistic people

Awaydays have become commonplace in most organisations. They are 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. 

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.

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. 

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!

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!

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.

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. 

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.

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.

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.

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.

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!

Finally, check in on spoons https://en.wikipedia.org/wiki/Spoon_theory 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.

Experts by Experience

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. 

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.

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. 

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 are 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.

Finally, there is the question of how EbE are chosen. Everybody has a lived experience, of course, so in theory any 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. 

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.

Equality, Diversity and the REF

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 https://results2021.ref.ac.uk 

Apart from the academic review panels, there is also an Equality and Diversity Advisory panel, whose remit may be viewed here https://ref.ac.uk/equality-and-diversity/ 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 James Coe points out, the following passage gives pause for thought (my italics):

“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, there was much less attention given to other protected groups. 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”.

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. 

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. 

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?

Access Rider

 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 https://weareunlimited.org.uk/creating-your-own-access-rider/

Name

 

Andrew Hugill

 

Intro Paragraph

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.

 

I have three invisible disabilities which affect my work and life: 

1. autism (includes social and sensory issues, but no learning difficulties);

2. severe hearing loss (includes tinnitus and diplacusis);

3. balance disorder (Ménière's Disease).

 

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.

 

My Access Needs

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.

 

Essential

a.   I do not drive, but will travel on public transport.

b.   My dietary requirements are: gluten-free, low salt, no caffeine.

c.    I require disability support in airports.

d.   I cannot balance in the dark, so some kind of low-level lighting is always necessary.

e.   I need a dimly lit quiet space to retreat to at any venue (doesn't need to be anything special).

f.     I need occasional short breaks to avoid loss of spoons, and I cannot listen to music for long.

g.   Speakers at conferences and events must use microphones, or live captioning.

h.   I must avoid fluorescent lighting, irregular patterns on walls and floors, and spaces with too much information/bustle.

i.      I must avoid floral perfumes, air fresheners, and other artificial smells.

j.     I need captions on videos and in live conferencing.

k.    I follow routines, so need to be able to take lunch at 13.00, for example.

 

Desirable

a.   I prefer natural light and spaces with clear edges/corners.

b.   Please avoid shining lights directly into my eyes, especially when I'm speaking from a podium.

c.    I prefer to see in advance pictures or videos of the places I am going, to reduce anxiety.

d.   I prefer low-arousal room colours (see autism-friendly environments below).

e.   I like to have advance warning of any fire alarms or other unpredictable and loud events.

f.     I prefer there to be no applause (but I can quickly put on noise-cancelling headphones to mitigate this if necessary).

g.   I lip-read, so prefer to be able to see people's faces when videoconferencing.

h.   Free-flowing "networking" events are very difficult for me. I prefer one-to-one or private contact.

 

In general, the social model of disability 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.

 

Emergency Information

In any emergency, please contact [redacted].

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. 

In the case of a shutdown, please communicate simply and clearly. Again, find a quiet, dimly lit place and leave me to recover. 

Supporting Information

 

An article on Spoon Theory: 

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

An explanation of the social model of disability:

https://weareunlimited.org.uk/resource/the-social-model-of-disability/

 

A description of how to create an autism-friendly environment

https://livingautism.com/create-autism-friendly-environment/