I attended a conference last year as an expert speaker. As is often the case, I was quite unwell with mental health issues. My illness always seems to take a slightly different form and on this occasion I was not depressed or confused but I was just ever so slightly more vulnerable than I usually am. I will contrast two responses to my vulnerability. Firstly, there was an amazing young woman who is on the spectrum and is now among my friends, mostly because of what she did at the conference. This woman supported me by doing all sorts of things. She helped me use the public transport in the city where I was. She realised when I needed some space and gently steered me towards the quiet room set aside for Autistic attendees. She even bought me a can of Coke on one occasion. There was no paternalism or judgement, just one woman seeing a need in another and assisting. This young woman became a positive enabler and turned what could have been a very stressful experience into something which I enjoyed. My talk was well-received and I had a great time.
In contrast, I had another memorable interaction with a conference volunteer, one which was not quite as helpful. On the first day of the conference I left partway through the first session because I found the content triggering. I was seated near the exit so I didn’t think I bothered anyone by slipping out. I went to the Autistic attendees’ quiet room and played with my phone. A little while later a couple of the non-Autistic conference volunteers came in. I had a nice conversation with them but it seemed a little odd. It soon became apparent that we were speaking at cross purposes. I was forty years old speaking to adults but they seemed to think they were adults speaking to a child. At one point one of the ladies asked ‘So Jeanette do you live at home with your parents?’ I may have been a little mentally unwell and vulnerable but I am an Autism advocate nonetheless. I responded strongly with ‘I live in a house which I own. My parents live in a different state. I haven’t lived with them for twenty years.’ But this exchange seemed to confirm something I had been aware of for some time – some non-Autistic people view adults on the spectrum as if we were children.
A lot of my adult Autistic friends also have this experience. It is very irritating, even invalidating. I have lived independently for most of my adult life. I work in a professional job where I have quite a degree of autonomy and responsibility. I have a mortgage and people seek out my opinion of issues related to Autism. I am the author of a number of books and am considered an expert in my field. I host a radio program. I have been described as a genius on a number of occasions and I have a Masters degree. How then is it possible for people to see me as a child? I have a number of Autistic friends who are parents themselves and yet they are still treated as if they need a grown up to help them do things which they have been doing successfully for years. These people are hardly children and are rightfully annoyed when people treat them as such.
The other thing to remember is that many people on the Autism spectrum have had some very unpleasant life experiences. I know people )including myself) who have been victimised and abused, people who have been in institutional settings such as psychiatric hospitals, children’s homes and prisons. Most people who have been through such horrors are seen by the rest of society as maybe having had to grow up too quickly but Autists like me still find ourselves being infantilised, despite these things.
I do not know why this infantilising happens. I’m sure there’s someone writing a PhD thesis about it as I write (and if there is and they read this, I’d like to see that thesis :)) The fact is that it happens and it is invalidating and downright rude. For people who have experienced life as adults and have a lot to contribute to the world, being treated as if we were eleven and asked whether we live at home with our mummy is extremely irritating. People on the Auitsm spectrum do all the adult things that other people do. Things like
- Drinking alcohol
- Enjoying sex
- Having children
- Driving cars
- Having the whole range of sexual preferences and gender identities that neurotypical folks do
- Going to work and work in a variety of different roles, including managers and CEOs
- Being role models and mentors
- Studying and working as academics
- Owning property
- Running their own business
- Making decisions affecting their own and family members’ futures
- Participating independently in sports and leisure activities
- Choosing a faith
- Being involved in politics and civic life
- Doing every other thing that other adults do.
If you want to irritate and be dismissive to an Autistic adult, treat them as if they were a child – you’re pretty much guaranteed to succeed in your aim. However, if you want to show respect and make the most out of our talents and skills, please treat us as responsible adults.
Me being, y’konw grown up. I’m probably liaising with a publisher or something…