Perspective: We have always lived in their castles

against autism speaks

Having recently, finally, been diagnosed as autistic it really opened my eyes to how many popular misconceptions about autism there is, not just among the general public, but also the general ‘literature’ surrounding autism.

As such I was going to write one longer, critical essay on autism, education and the fluid nature of disability (which will be going up online later this week), and then I had this really fantastic short piece all done up for the print edition. It was about 800 words and was going to show how we see ourselves and the neurotypical world through our eyes.

That little piece was such a gem. There was one part where, in response to claims in the ‘general literature’ that see autistic people as incapable of empathy, I was going to point out that most of our emotional and social communication is nonverbal. So claiming that autistic lack the cognitive or neurological capacity for empathy was like putting ‘Crime And Punishment’ in its original Russian in front of an Ontario high school student and then coming to the conclusion that they were illiterate rather than just unskilled in the Russian language.

(Of course in the original, it was much, much wittier than that-seriously you might have even peed a little.)

I was going to talk about how the notion that autistic people are often characterized by having ‘unusual’ or ‘irrational’ fixations when from, the autistic person’s perspective, the entire neurotypical world is compromised of an endless serious of bizarre and  incomprehensible ritualistic behaviour (small talk ‘for its own sake’, properly ironing or tucking in clothes, not doing this or doing that) that the the average neurotypical (NT) can only justify by saying ‘just because’ or its ‘not done that way’, as if the fact the people don’t normally do things that way means that it’s only way to do something.

So many of these little things that compromise the NT culture are such pointless wastes of energy that as autistic, you’re constantly struggling to comport yourself to them even though they make no sense, nobody can justify them and everyone seems to agree that they’re irrational and serve no purpose- yet do them anyways for the sake of other people who agree that they’re irrational and gain nothing from them (i.e. Everyone says things like ‘you can’t judge a book by its cover’ but guaranteed that the majority of the people who say things like that, when doing the hiring, will hire the better dressed, charismatic person than the slightly dishevelled introvert with objectively better qualifications- why? ‘Just because’, ‘that’s the way it is’).

I was going to close that discussion with some question like ‘should autistic people characterized as having unusual and focused proclivities? Or should they be characterized by having far less ‘unusual’, ‘irrational’ or ritualistic behaviour? Is it a product of able-ism/neurotypicism science that fails to ignore just how truly filled with with mindless nonsense and empty gestures the NT world appears to autistic people?

Because the worst part about how rigidly fixed in their ways NT’s are, the worst part is how savagely they police those rituals in terms of social and economic exclusion if you fail to meet them (or the weird way, that if you forget something or fail to accord yourself to rituals NT’s will almost always jump to the conclusion that this somehow how a personal sleight or act of disrepect towards them and then use that to rationalize all kinds of verbal and emotional abuse #insightful #amirite?).

That’s what I was going to do at any rate. Right up until 2pm on Saturday, well past my deadline, having run into the same brick wall over and over again- how little I can assume the reader to even know about autism. The article I intended to write was never going to work because simply explaining what autism is would have taken most of the wordspace.

In many ways it speaks to the problem that organizations like the Autism Self-Advocacy Network try to address- the fact that majority of ‘awareness’ campaigns and literature surrounding autism are produced by non-autistic people — professionals, parents etc but not autistic .

Nowhere is that more prominent than the visceral animosity the autistic community has for the organization AutismSpeaks. While AutismSpeaks has been responsible for spearheading campaigns like ‘Light It Up Blue’ and ‘World Autism Day’ and bringing autism into public consciousness, it has been heavily criticized for campaigns that quite consistently paint Autism as an ‘epidemic’ and ‘illness’ or a ‘burden’. That’s just the beginning of their problems: there are no autistic people on their board, the majority of their research funding goes into ‘cures’ and ‘preventions’ rather than educational and social accommodation programs, staff members and promotional material has occasionally implied or expressed sympathies with parents who murder their autistic children (rather than seeing it as a horrific hate crime).

In fact, AutismSpeaks’ characterization of autism in its campaigns has been so badly handled that autistic author and rights activist and leader John Elder Robison resigned in 2013 after AS co-founder Suzanne Wright published an op-ed to the Washington Times comparing autistic people to kidnapping victims and using a lot of misleading and misrepresentative statistics in the process.

With its awareness campaigns rife with inaccurate and negative portrayals of the lives autistic people and its emphasis on understanding it as a disease, combined with its emphasis on eugenics as a legitimate medical response to Autism, for many people within the ASD community having AS as ‘flagbearer’ for autism awareness is like having the Ferguson police force as the keynote speakers at a Black History Month event.

To make matters worse, all this ‘awareness’ doesn’t seem to be doing anyone any good. The fact is, that these awareness campaigns rarely penetrate farther than ‘there is something called Autism, don’t hate.’ When basic understanding is so lacking- this is hardly enough.

And if you don’t believe me, or think I’m being ‘ungrateful’ for all this awareness then I challenge you to visit the World Autism Awareness Day page right now.

No seriously, stop reading this and go look at it- there’s almost zero actual information about autism and just pictures of autistic kids wearing branded LIUB, WAAD and AS clothing, business carrying LIUB lightbulbs (money from which goes to Autism Speaks, (instead of you know, autistic people). Judging by their Facebook page, it seems like most of the effort put into these awareness campaigns seems directed at raising awareness about the awareness campaign.

‘Awareness’ is not nearly as needed as understanding.

Instead, these campaigns, fundraisers etc seem less and less like they’re less about us.

More and more often we appear only as props in other people’s self promotion when it is convenient and when not- back into the discursive castles in which we shall always have lived and appearing only as glimpses caught in windows amongst rumours of ghostly occupancy.