Dystopia: A story of “Autism Research”
Since autism first entered the zeitgeist, and probably before, research into it has focused largely on what causes it. The reason for this is clear to pretty much the entire autistic community.
Rather than embrace the existence of a neurominority, and validating our right to exist, science largely wants to eradicate us.
Now with the looming spectre of Spectrum 10k (S10k), never has it been more obvious that our wellbeing and our needs as Autistics do not matter to the Autism Research “Industrial Complex”.
Looking at our genetics is what attracts the big money, and (as in the case of S10k) they won’t guarantee what will be done with that data.
The general population worships the genetic research being done, believing only that they are helping us. While we, the neurominority, beg them to help us improve our quality of life, our wellbeing.
While we beg for scraps of validation and recognition of our needs, groups like the ARC in Cambridge ignore us.
Certainly, their is a premise for a dystopian fiction novel in this scenario, that would require little more than an accurate glance into the future. One need not embellish the truth to tell this tale in a truly terrifying fashion.
Perhaps, then, you can understand why the Autistic community is suffering so greatly right now. I am watching my fellow autistic advocates burnout and shutdown in the wake of yet more research that cares not about the lives of our neurokin.
I will not stand idle while this community is decimated. This community saved my life, I am certain it saved countless others. Now is the time to unite, and shift the scientific paradigm to one that listens to the minorities it claims to act for.
I will not be erased, and I will not allow my fellow Autistics to be erased either.
I believe a future without Autistic people is a bleak one. A world without diversity is a world without a soul.
Diversity is at the heart of any healthy society, civilisations that fear diversity are known to crumble. S10k goes beyond the very valid concerns of the Autistic community, it is a symptom of a world that fears it’s own diversity.
We must root out the ableism endemic to our communities, and the world at large.
The time to stand up and be heard is now.
The silence from my neurotypical extended family, acquaintances and colleagues is deafening. No one cares. I’m looking at my brilliant autistic husband, my digital artist youngest child, and the only one of us who would be considered ‘worthy’ by SBC and his ilk would be my maths/coding superstar son. Thank you and your colleagues for everything you are doing to derail this awful research.