NOTE: Eugenics, physical abuse, and depression will be discussed.
Public knowledge of autism is...let's call it a mixed bag. There are people who see autism as a blow to a human development and a burden to those around them that needs "curing". There are people who see autism as a unique gift that gives them a different perspective of the world they can share and shouldn't be "cured". There are people who argue that autism is far more complicated than either of those binaries. I don't want to litigate what perspective is "correct" but needless to say it's a thorny issue. And I personally find the conversation so toxic that I just choose not to talk about it lest I subject myself to people yelling at me at how "wrong" I am. Besides, I've always stated from the outset that this blog is just my own opinion and I don't expect others to be the same but just to respect it.
Then I read about a big initiative that scared me so thoroughly that I need to weigh in.
A collaborative initiative between the University of Cambridge, the Autism Research Center, and University of Los Angeles called Spectrum 10K launched as the biggest autism research project to examine environmental and biological factors impacting autistic people's well-being. Its stated goals is to look at and address physical and mental health issues autistic people can have to better address their needs and "alleviate unwanted symptoms and co-occurring conditions". It seems like the bulk of the research will be reliant on participants filling out online questionnaires and providing health records and DNA samples via salvia swabs. About 10,000 autistic people were set to participate in this project. The proponents of Spectrum 10K claim that this study will help improve the lives of autistic people and thus further the cause of neurodiversity (a celebration of brain diversity I talked about way long ago).
Why do I feel like this isn't so much championing for bettering the lives of autistic people but a sneaky way to "cure" people like me?
The push to neurodiversity in the public sphere is an incredibly recent phenomenon. When I was growing up in the 1990s and early 2000s, autism may has well been non-existent to most people. The Diagnostic and Statistical Manual for Mental Disorders (DSM) may have been expanded from an extremely narrow criteria set to fold more people in to try and get their needs met but my own childhood and adolescence saw parents who didn't want me around their children because I "made them uncomfortable" and school officials constantly hovering over me when I had signs of emotional distress or meltdowns. I did manage to have parents and some friends who took the time to make sure I was able to get meaningly involved and included in school and community but I still developed a sense of social isolation and feeling like a burden to others. Nobody outright told me I was an aberration, but I felt it. And I've spent my life going above and beyond trying to make a success of myself to demand people see me with respect and dignity with a severe lack of self-esteem and imposter syndrome I'm still trying to change. It's a lot to live with.
But I'm eternally grateful that during this time my parents weren't receptive to the emerging negative narrative that began shaping the autism discourse.
When I was a preteen, Andrew Wakefield published a paper in the British science journal the Lancet claiming that the MMR vaccine created a chain reaction in a toddler's body that could lead to developing autism. This took off like wildfire as autism diagnoses grew exponentially since the 1990s and registered with parents who felt blindsided by their children's condition and had no great information empathetically explaining autism to them. Panicked parents took to pseudoscience to try "fixing" their children like feeding them bleach and took to refusing the MMR vaccine for their children that persists to this day. Wakefield has since been thoroughly disavowed by real science by multiple subsequent studies disproving Wakefield's results and stripped of his medical license after investigations found his results came from subjecting his subjects to invasive procedures and his funding came from lawyers planning to sue vaccine manufacturers (the Lancet has also retracted the piece), but people still cling to his false conclusions and catastrophizing. It's a narrative that hasn't really died, and the COVID-19 pandemic expanded the anti-vaccination movement to becoming even bigger public health issue than children contracting measles in an attempt to "avoid" autism.
To me, though, the greatest damage of Wakefield's "study" has the call to erase autism entirely. Among the many responses of the Lancet publication were the rise of parent groups and organizations dedicated to finding the sources of autism and developing "treatments" with an eventual "cure". Even the biggest autism advocacy organization started out in its mission to find a "cure". Things are moving more into a "treatment" and "empowerment" perspective, but a lot of damage has been done. It's still an uphill battle to get people to see autism as a difference rather than a disease.
Genetic research into autism may be an interesting curiosity but the question I have is what is the point of it. Sure, I'd like to know the source is but research isn't done without a practical purpose. What are people gonna do with a known genetic variant for autism? The answer to me feels like if they can identify the gene, they can determine when autism is found in a fetus. And if they can detect when that is, then the parents can decide whether or not to keep the child. Downs Syndrome is detected during pregnancy and many people choose to abort rather than keep a child with the disability. The same scenario is possible with autism because of the stigma it carries. And if the genetic chromosome is found, then there's a possibility that attempts will be made to "fix" it, which flies in the face of the autism acceptance movement. A "cure" alleviates the need to fight the ableism autistic people face every day and the supports people need now and in the future. These practical outcomes scare me. I need help to live my best life now, not a fix-it for the disability I was born with.
The Spectrum 10K consultation reports have been delayed due to outrage from autistic advocates and it might be for the best. As for me, it might be an interesting thing to know where my autism stems from but I don't think that it would lead to anything truly productive to help people like me. My depression and anxiety are things I'd like to fix, but not my autism. I don't know what kind of person I'd be without autism, and I don't want to find out. It's helped shape me in who I am and I'd appreciate if the world could accept me as I am rather than try to "fix" me. The world would a better place if people were more accepting of differences rather than trying to get rid of them.
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