A few years ago, for whatever reason, the UN decided that what the world – and presumably Autistic inhabitants of said world – needed was a day of significance for Autism. They decided that it would the day after April Fools Day and would focus on raising awareness around Autism.
After a while, some (mostly Autistic) people realised that celebrating ‘awareness’ of Autism was a bit deficient. I am aware of all sorts of things which doesn’t necessarily lead to me supporting or empathising with them. In fact there is a group which is incredibly ‘aware’ of Autism and that is bullies who pick on Autistic people. I reckon they are probably aware of a whole load of things and use that awareness to torment the person. So awareness by itself is kinda pointless and can be counterproductive. Another thing which started to happen around Autism Day was that a particular large Autism body which I shan’t name but which has the initials AS decided to get involved. Some people abbreviate it to A$ given the money-making juggernaut this organisation is. This organisation has a huge reach and some quite unhelpful attitudes around Autism, namely that it sees it seem to think Autism is a ‘tragedy’ and that Autistic people would benefit from a ‘cure.’ A whole load of the thinking is around deficits and negative messaging. I recognise that organisations can change but this one has yet to convince me they are trustworthy. Most Autistic adults find talk of cures and tragedies and things highly offensive, for fairly obvious reasons. I’m quite certain I am not a tragedy and if anyone said they wanted to ‘cure’ my Autism I would decline. Autism is a integral part of what makes me me and I like being me.
However, the organisation which promulgates all of this has a large amount of influence in the discourse around Autism in some parts of the world. They decided on a colour for Autism Day – blue. And blue became synonymous for ‘Autism awareness’ around the world.
Thankfully there are a bunch of Autistic advocates and activists out there challenging this rather hegemonic blueing in April. As someone in the Autistic community with a little bit of recognition I have been asked to light it up yellow, blue and yellow, taupe with a picture of cats (from the wonderful ‘Tone it Down Taupe’ group which seeks support for those with the terrible affliction of ‘neurotypical syndrome’ – it’s a joke with a strong kernel of seriousness behind it). I have also been asked to go rainbow, ‘red instead’ and a few others. I ended up going with the cat decal form the Tone it Down Taupe page as I like cats and I like their page.
The difficult thing is that many people support light it up blue completely innocently. We can’t assume that everyone with a connection to Autism is in on the discussions that myself and my advocate colleagues are having. So lots of people associate blue with Autism Day and feel they are being really helpful by promoting the blue campaign. This is one of the reasons that April, and 2 April particularly, are exhausting for me. Today I have explained why I don’t light it up blue no less than five times. I don’t mind explaining but it can be a challenge. I don’t assume that people who support the blue campaign are ableist themselves or think my very existence is tragic. Mostly people are simply ignorant of the history behind that aspect of Autism Day.I never blame people for being ignorant of something. Ignorance offers an oporitntiy for education and starting a conversation around advocacy and empowerment for those of us on the Autism spectrum.
April is always a challenging month. Some of the issues are:
- I get asked to events only to turn up and find a sea of blue balloons and puzzle pieces and so forth. This makes me feel uncomfortable and I don’t know how to address my discomfort and whether to distance myself from the associations with ableism from the stage or talk to the organisers privately beforehand or after my talk. Plus there will almost certainly be a photo of me looking very uncomfortable in a sea of blue next to a smiling and oblivious CEO which will be on social media until the end of civilisation!
- The workload for an Autistic speaker in and around April is unbelievable. This year between 24 March and 6 May I have eight presentations booked – four of which are interstate and two of which are keynotes. That is a lot of traveling and a lot of meeting roomfuls of people who want to talk to me. This is not to mention all the other things I am asked to do – guest blogs, magazine articles, providing signed books for stuff…I mean I absolutely love doing all these things but when it is all concentrated in a six week period it’s a bit tricky!
- I am friends with a number of advocates who have a number of different views and approaches. I want to support all their things but I don’t think my Facebook profile pic will be able to go yellow, red, yellow and blue, rainbow and catty all at once! I wish it could, I really do. I have only recently learned that I am allowed to disagree with people who are my friends so I come from a firm background of people pleaser (and most of my ancestors before me have only served to reinforce this). I worry that people will think I am critical of them if I don’t do one thing or another.
So April is a very fraught and busy month for me. Quite ironic that the day the UN set aside to promote understanding around Autism is very stressful and unpopular not just with me but with many of my advocate colleagues and other in our community as well.
I’l leave with an amusing but telling anecdote. Today I attended a barbecue for Autism Day which was put on by the organisation I am a board member for, Autism Asperger ACT. It was a fun afternoon and I talked with all sorts of people about their lives. At one point I had two of our suff members asking about why I don’t support that A$ organisation and all its blue trappings. (And they totally ‘got it.’) We had a large sponge cake and one of the staff had brought along what they thought was a little tube of icing to decorate the cake. The ‘icing’ happened to be blue. As a board member, author and fine art graduate, it was decided that I should decorate the cake with an approximation of our corporate logo (which is a very pretty ‘A’ with coloured lines coming off it as if the A is shining). The ‘icing’ was very runny and quite a dark colour. It was hard to do but I managed to get an A with sparkly bits. I used the back of a spoon to tidy up the lines and without thinking licked the back of the spoon….only to find I had ingested a large and foul-tasting amount of food dye, not icing! My lips and teeth and tongue were a vivid shade of blue. ‘Of all the colours!’ I thought. I had to apologise for my blue face when I gave my presentation. It was incredibly funny and I reflected on the irony that despite my best efforts, the stupid blue still got me!
So have a good rest of your Autism [Empowerment, Respect, Understanding, Acceptance, Love, Friendship, Support] and ‘Awareness’ Day.