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.
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.
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.
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.
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 Aural Diversity and Spectrum Sounds.
To give a few examples:
while advocating for aural diversity, I have had an impact on the Welsh Government, whose recent call for responses to their proposed noise and soundscape plan 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.
I recently took a stand on the use of awaydays (see my previous post 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.
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.
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 everything. That would be too exhausting. You have to choose your battles.
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.
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.