Edit: I am in no way saying that Autistic researchers work is tokenistic in this post, I am trying to talk about how studies such as S10k claim to have included Autistics in the planning of their studies purely to try and justify unethical research.
It seems with each passing day there is a new article about a piece of autism research being conducted. There are always two common themes. The first is that the research is conducted by non-autistic researchers, who generally only include Autistics in a tokenistic way at best. The second is that pretty much all of the research aims to reduce the number of Autistic people, either by reducing diagnoses, or literally erasing us.
One could be forgiven for thinking that ableism is having a renaissance, but the truth is much more grim than that. The truth is, that ableism isn’t re-emerging, it never went anywhere. The main observable difference that I find now, is that people (researchers in particular) are being much louder about their efforts.
Their want to erase us, reduce us, eradicate us, has become much more overt.
Is it any wonder that Autistic people around the globe are suffering right now? Our entire lives we have endured systemic oppression and (not to mince my words) systemic violence, and now we face a world where we are literally being shown how much we are not wanted. It’s sickening.
We have the notorious Spectrum 10k project, who definitely don’t support eugenics *wink wink*, but also can’t guarantee that the data wont ultimately be used for that. Canada now has the Q1k study, which to me seems to just be S10k lite. We also have the study that pushed me into writing this. Reported by various news outlets as an “early-intervention baby therapy”.
This therapy, supposedly, reduces Autism diagnoses by teaching infants “better” social communication. One need only read the published study to realise that these researchers don’t care about the wellbeing of Autistic people.
The medical model is strong with this one.
The study is riddled with pathologising language. The study outcomes are also highly questionable. Why do you want to reduce the number of people receiving an autism diagnosis? From where I am sat, it seems that they either don’t want us to have support, or they have a problem with Autistic people and the number of us who exist.
No, there is no renaissance for ableism. It’s here, and it’s always been here. Society is afraid of us. To quote a term I recently saw used by Dr. Nick Walker, it’s autistiphobia. Something about our existence makes non-autistic society deeply uncomfortable, and in a more literal sense, hateful.
The thought that keeps going through my head is this; if they can’t bring themselves to actually improve our lives in a meaningful way, can they not at least let us live those lives? Why do we need constant reminders that our existence is so offensive to them that they will either ignore us, or erase us.
We are human beings with a right to live happy lives.
At what point did “Autistic” become synonymous with the word “broken” or “burden” in the non-autistic world? Even as I write this, researchers rush to speak over us, presuming, it seems, that we are incapable of speaking for ourselves. The world has a saviour complex, but we don’t want a saviour. We want people to listen to us.
We are treated like a perplexing puzzle that needs to be solved immediately. As if our existence is a public health crisis.
We have been explaining ourselves for long enough. It’s time that society at large began to listen to us. Where millions are poured into erasing us, there is a deficit in the support of those Autistic people who have been trying to help us for years.
I am not a crisis to be fixed. I am a human being, and I am sick of being held down.