I have been an Autistic self-advocate since 2005. As the years have gone by the circle of people who I know or who know my work as an advocate has been expanding outwards. At the same time, the knowledge and ‘awareness’ of Autism has also been expanding. When I was diagnosed with Asperger syndrome in 1994, people I mentioned the diagnosis to all responded with ‘what’s that”? When my first book, Finding a Different Kind of Normal – Misadventures with Asperger Syndrome, was published in 2006, people would usually respond to my diagnosis with ‘My [insert child of relative / friend / work colleague – and it was ALWAYS a child not an adult] has that…’ Now people are certainly more ‘aware’ of Autism. Any teacher I speak to will have taught a number of Autistic kids. And everyone I talk to knows someone – child or adult, woman or man – on the autism spectrum. It would appear ‘awareness’ is at an all-time high. I hear you saying ‘That’s a good thing isn’t it?’ Yes it is a good thing, well sort of.
Many of my Autistic friends and colleagues find Autism Awareness Month in April to be a difficult time. Sometimes ‘awareness’ and acts to ‘help’ Autistic people fall a bit flat. Just look at the meaning of awareness. I am aware there is a country called Albania. People who live there speak Albanian – I think. I have some vague memory of a dictatorship or communism or something in Albania’s past. I am definitely aware of Albania but it would seem my level of understanding of Albania and its people is pretty much zero. Being aware of something is largely meaningless in terms of how one approaches it and autism is no exception to this. Bullies are aware of an Autistic person’s difference and these days probably aware on some level at least, of Autism too but awareness will not stop them bullying. If their awareness becomes joined by some respect and inclusion and understanding, it would be useful and probably stop them bullying. Alone though, awareness isn’t much help.
I find I get asked lots of questions about Autism in April. This is mostly a good thing and I think asking Autistic people about Autism is almost certainly the best way of learning about Autism. However, people often assume there is one Autistic ‘type’ which we all belong to. ‘Autistic people do / think/ believe this’…. So I find myself explaining more frequently than usual that I am not good at fixing computers and I’m not good at math and that, yes I like fashion and jewellery but despite all this apparent evidence to the contrary, I am still Autistic! While we are all individuals there aren’t really enough Autistic role models out there yet for people to know much more than the stereotypes and assumptions.
I am actually a little to blame myself in terms of assumed knowledge around April too. As an Autistic advocate I have a lot of quite sophisticated and nuanced knowledge around Autism which most people don’t. This is not other people’s fault. You can’t expect everyone to know about every facet of life. So while some people say outright offensive things which need addressing, other people speak to me about Autism through the lens of their own understanding which is different to mine. They are not being insulting or rude, just trying to connect. It can sometimes be hard for me to work out what my response should be. For example, today I spoke at a school. A parent of an Autistic daughter at the school asked me to speak and I did. I enjoyed speaking to some very engaged kids. However, the cupcakes for the event were blue. Any Autism advocate and activist knows that blue in April is the brainchild of an organisation which needs learn some basic and important lessons around inclusion and has been responsible for pushing some very damaging portrayals of Autism in the past. However to most people, going blue for Autism is what you do. There is a vast chasm between my knowledge around the history of ‘Light it up blue’ and the understanding of people who do not share my knowledge. So while I was inwardly upset that the school didn’t share my understanding and that I would have been a LOT happier with rainbow cupcakes, it actually wasn’t meant as insulting or offensive on their part – they just didn’t share my knowledge on that issue. I had to go with the ethos and intent of the blue cupcakes, which was actually intended to be inclusive. Oh, but we live in a complex world! I felt that my talk to the kids about my journey as an Autistic woman was useful and if I had cancelled due to my own scruples, it would have been a bad choice. In April I am often weighing up those sorts of decisions.
I guess my main thoughts around Autism Awareness April are to understand that the month was designated by the UN, who are a great and well-intentioned organisation but they do not share the specific knowledge we have as Autistic people. This situation does not need to be static and the conversation around awareness and understanding and respect and inclusion is ongoing. April is often seen as being an imposition on Autistic people – at least among my own peer group. I think it would be great if we could reclaim it and make it our own. I think it’s great people are thinking about Autism even if they haven’t thought about it before, but for Autistic people and those who love us, we live Autism 24/7 all year ‘round. As an Autistic person, receiving awareness from the rest of the world is not at the top of my wish list. I want an end to bullying, violence and abuse of Autistic people. I was respect and genuine support and understanding for every Autistic person. I want meaningful employment and education opportunities. I want to not be seen as the ‘other’ but just someone with a few extra quirks. It will need more than a month and a vague notion of awareness to make that happen I think!
About Yenn Purkis
Yenn Purkis (formally Jeanette) is an author, presenter, autism advocate and community leader. Yenn is the author of six published books on elements of autism and has contributed to a large number of journals, books and websites. Yenn is a presenter and facilitator and regularly gives keynote presentations including at the 2013 TEDx Canberra conference. Yenn is a member of a number of committees and reference groups and is has a number of awards for leadership in the community, including the 2016 ACT Volunteer of the Year.