Opinion guest column

Autism research from an Autistic perspective

Neurodivergents deserve better

Warning: Some of the materials linked in this article contain ableist language and ideas, as well graphic descriptions of violence.

I was diagnosed with Autism Spectrum Disorder at 18 years old. At 18 years old, I began to understand myself. Finally, I understood why I am this way. Why I can never stomach fish, why scented candles give me nausea, why eye contact is painful, why I don’t shut up, why I keep repeating the same phrases over and over again, why I can smell the barbeque from three doors down, why jokes can go over my head, why I laugh when no one else does, why I’ve failed at femininity, why I’ve been a pretender, why I’ve stuck out, why I’ve been sensitive, why I’ve been taken advantage of, why I had to take a break from school. At 18 years old, my life was no longer a random series of episodes in pain and suffering, but a riddle, finally deciphered.

I believe that my Autism is a fundamental part of my existence and a fundamental part of my personality and perspective. My successes and strengths exist because of my Autism, not in spite of it. To attempt or to remove or “cure” my Autism, would be ego murder.

Why then is my life and those of others like and unlike me a playground for a debate of “ethics”? Why is the erasure of my experiences and those of future neurodivergents even a question? Why do I have to argue for my right to exist?

Despite my wishes or those of other Autistics, millions of dollars each year go to Autism genetics and neuroscience research. In 2016 (the most recent year I could find comprehensive data for), of $364,435,254 spent in Autism research in the United States, 24% went to genetics and 35% went to biology. Despite studies indicating that Autistic people live shorter lives (some indicate a life expectancy as low as 36 years old), are more likely to commit suicide, and face a 58% young adult employment rate, only two percent of those millions went to “lifespan issues.” (“Lifespan issues,” of course, is a euphemism for anything that happens to Autistic people past the age of 18.) At the risk of sounding anti-intellectual, I do not care what causes Autism nor do I care what makes our brains so different. Generously, I will say that pure curiosity motivates most of these researchers, but what happens once we find “the cause” of Autism? It’s not ludicrous to assume that in vitro fertilization clinics would quickly implement Autism-screenings, selecting only for zygotes least likely to be disabled and disposing of the rest. Start-ups will create prenatal tests to determine if your child could be anything like me, giving you a chance to terminate. This is already happening with Down syndrome. Science does not exist in a vacuum, and if it can be applied to make a profit (or to do evil) it will be!

Defenders of these looming eugenicist practices claim they want to “minimize human suffering.” But what suffering? The suffering I have experienced has been because of misunderstanding, rejection, judgement, isolation, and abuse. The suffering I have experienced has been because of how others perceive and treat me as an Autistic person.

My suffering is not intrinsic to my Autism. If what truly interested them was suffering and not conformity, they would be working to change the conditions that are currently causing suffering: poverty, racism, police violence, transphobia, incarceration, colonization, ostracization, ableism, etc. There are many systems that are actively doing harm that NEED to be dismantled to ensure the safety and well being of all people, so why are we working to annihilate neurodiversity?

Autism research and paradigms have shifted from finding a cure to early detection and intervention; even the notorious Autism Speaks has removed the word “cure” from its mission. But I am hesitant to applaud this as a victory, because these interventions may be another method of enforcing conformity, leaving the ableist status quo unquestioned. Even children diagnosed early can suffer lasting trauma from Applied Behavior Analysis therapies and Special Education classes. Why are we working to annihilate neurodiversity?

Everyone deserves to live a full, dignified life. And by everyone, I mean everyone. Even those with high support needs, those with intellectual disabilities, those who exhibit emotional outbursts, those who are non-verbal, those who have been convicted of crimes, those who may pose danger to themselves, those who may pose dangers to others. We all deserve better than extinction. We deserve better than bleach drinks and enemas, we deserve better than inspiring an anti-vaccine/ anti-science movement, we deserve better than sedation via psychiatry. We deserve better than trauma, abuse, and extinction. We deserve better than a measly two percent in lifespan issues.

Ultimately, I hope that Autism research will shift to finding radical and innovative ways to support people with Autism and challenge the neurotypical hegemony. Beyond that, to paraphrase Mia Mingus, we need to dismantle systems that decide who is worthy and unworthy of being “typical,” of having their needs met, or of even living; further, we need to build a world that values all bodies and minds as “unique and essential.” I hope that all researchers can uphold these truths and consider the effects that their research will have in one, two, five, or more years. And that scientific curiosity always considers compassion first.

If you are interested in learning more about Autism from an Autistic perspective and supporting Autistic voices visit the webpage for the Autism Self Advocacy Network.

D. Catalá is an undergraduate on medical leave.