April is fast approaching. For me April means a lot of things, many of them difficult. In 2007 the United Nations specified 2 April as ‘World Autism Awareness Day’ presumably from good intentions. I am unsure how many autistic people were consulted in this but from what April seems to represent I suspect it was not a great many.
In April I always think of puzzle pieces and lighting things up blue and people talking about how ‘tragic’ autism is, how it ‘wrecks families’ and how autistic people are ‘burdens’. Inject a bit of cure talk and that very unhelpful concept of an ‘autism epidemic’ and that – as far as I perceive it – is April. I know few autistic people who look forward to April. I have a friend whose hair is usually blue but in April he dyes it pink so as not to be associated with ‘light it up blue’ (more about that later).
I have been doing advocacy since the medieval period (or so it seems) and so I have seen a lot of things change, sometimes for the better and sometimes not. However, I have seen changes in thinking which are very promising. I am involved with an autism organisation which is neurotypical-run. I bit the bullet the other day and called and asked if they needed me to do anything for April. I must admit I was quite surprised when the staff member said ’oh we are more thinking of doing something for Autistic pride Day on 18 June’.
Much more frequently these days I see articles in the media about neurodiversity. I see a LOT of other advocates doing amazing work and I see the beginnings of the mainstreaming of attitudes which were once considered radical. These are good things but we are not ’there’ yet by any means.
I attended an event not very long ago for an autism organisation which no longer exists. I was an influencer for this group – Well I thought I was. I said to them could we not go blue for April but instead go rainbow or gold. (For those who don’t know, the ‘light it up blue’ campaign is closely associated with an organisation called Autism Speaks which has been very vocal in saying pretty much the opposite of all the things autistic advocates tend to think. I can count on the fingers of one hand the number of autistic people I have met who were OK with the messaging from this organisation, I believe that this organisation may be changing their focus gradually but they have been a very problematic presence for some time). Anyway, the organisation I was part of agreed not to do blue but when I attended their event all the balloons were blue and there was a huge blue cake. It was as if I never said anything!
This kind of invalidation and tokenism is something I tend to associate with April *although of course it can happen in any month). It’s like it is done on behalf of autistic people with little for no input on what we actually want and need!
A part of the April thing which needs attention is the concept of ‘autism awareness.’ I am not alone in strongly disliking this. Awareness as a stand alone concept is meaningless. A bully is ‘aware’ their victim is different and it doesn’t stop them bullying. In fact that awareness may well be the excuse the bully uses to attack their victim! What does being aware of autism even mean? It doesn’t suggest understanding and could simply mean someone knows there are autistic people in the world.
Despite all this, myself and other advocates can have a busy schedule in April. A lot of my work in April involves dispelling the myths and misconceptions, which is actually a useful – if rather tiring – thing to do. This year I have some really lovely events planned. I am doing a book launch thing for Graeme Simsion alongside fellow autistic author Clem Bastow and then I am going to Brisbane for the Autism Cooperative Research Centre participant day where I will be among great friends – autistic and allistic alike. I then go off to Sydney for an awards night where hopefully I will see lots of autistic people getting awards for doing great things. I also have a presentation with Neurotribes author Steve Silberman and the I CAN Network CEO Chris Varney which will be recorded but aired in April. I’m also doing a podcast which is a bit secret squirrel so I won’t say what it is but it will be cool. I think this rather silly amount of activities will be much less stressful than just doing one event where presenters’ thinking is counter to the needs and wishes of autistic people and I am actually looking forward to going to four states in four days!
One thing about April is it tests my sense of what my message is and it forces me to evaluate where things are up to, inclusion-wise. As events go, autism day is like the canary in the mine. Each year it has happened I have seen differences, sometimes large but often subtle. It reminds me that the future is not a given. It is not set in stone. If advocates and genuine allies do not speak up things will revert to an awful past and all those gains we have fought for will need to be fought for all over again. So while April makes me cringe and dread the media articles that my role as an advocate means I have to read, I also look at it as a time to stake stock of what I am doing and ensure I am working to empower and liberate.
So happy autism acceptance, respect, value, kindness, love, understanding, empowerment (and awareness) day.