When my therapist made the suggestion that I was autistic several years back, I was a bit annoyed. I’d been talking to him about other things and he was changing the topic and I don’t like when therapists do that (I know sometimes they use topic changes to get me out of a loop, still very frustrating). He had me take a screening test then referred me for evaluation. My diagnosis was straightforward and uneventful, even as a woman, even on state-supported health insurance.
Naturally, as the millenial I am, I joined several online communities targeted to autistic adults and especially autistic females. What I found *felt like* rooms full of awkward people gushing, “OMG I’ve finally found my people!” and sharing memes that seemed like they would be universally appealing to anyone that leans even slightly introverted. Very liberal and radically accepting vibes all around. I am left-leaning, but I am not a naturally accepting person, and am honestly not capable of accepting that which I cannot challenge directly. A lot of self-indulgent attitudes, sometimes even outright unhealthy behaviors being praised. Lots of sharing screenshots of test results from internet quizzes about autism or “neurodivergence” and validating literal strangers on their results. I even once saw someone brand new to a group, just there because they were curious, the screenshot they shared showing a test result that did not suggest autism at all, and multiple women still jumped on the bandwagon to tell her that the test is probably just sexist and she doesn’t need to prove her autism to anyone and she is valid and so is her autism. Y’all, calm down, this person is a stranger and you don’t know anything about her except that she has quiz results (from quizzes you trust for some reason) that suggest she is not autistic.
So eventually I ended up in more different autism groups that focused on laughing at or ranting about how bizarre these other autism groups were. These groups were lovely in that I didn’t feel like the only asshole on the internet anymore. But it still felt like a room full of people going, “Oh thank God, I’m home now!” And I didn’t feel it. And I didn’t need constant reminders of the weird alternate dimension of those other groups. And I also found unhealthy behaviors being normalized in these groups, too. Including an idea that it’s ok for autistic people to just be on the internet 24/7, because our brains are different or something. No, it’s still bad for us, physically and mentally. Maybe even moreso because we tend to be more fragile physically and mentally.
To be clear, I don’t really care if other people choose to make unhealthy choices of any nature… drugs, food, laying on the couch all day, whatever… I could just see it harming me, so I stepped back. I cut my screen time to less than two hours a day. Most of which became playing Trainstation2. And I could see my life coming back together and my brain healing.
I felt like I had escaped. It felt good to be back, engaged in real life. Then even in real life everyone started talking at me about autism. Each with the frightening passion of someone who has spent too long in online echo chambers. For example, my therapist decided he was autistic also, and adopted some bizarre habits and attitudes surrounding that, which hadn’t existed when he suspected me to be a year prior. For him, the line had shifted. I was, to him, very, very autistic, while he was just over the line.
I have met many people or had people I know tell me they are just over the line and it is so odd to me, first because everyone seems to want to be just over the line, and second, because there is no such line.
The biggest frustration for me in all of this is that “autism” is just a construct, but people treat like there is some kind of perfect division between each “neurotype.” The definition of autism expands with no data to support such an expansion. Dr. Anagnostou has the most fascinating perspective on the classifications of ASD, ADHD and OCD and makes a good case that Autism Spectrum Disorder is probably not a good category. I would argue that the new genetic research that came out last month supports the idea that our categories don’t make sense. Mainly that profound autism is linked to a different type of genetic abnormality than autism without cognitive delays or seizures. And these autistic genes that are inherited that may contribute to autism without cognitive delays, epilepsy, etc. are passed down often by parents who do not have autism.
The new research backs up an older framework that seems less popular now. The idea of a Broad Autism Phenotype, where one or two parents may fit into this category of subclinical autism. It feels to me that “Autism” has now expanded in some circles to include anyone within the Broad Autism Phenotype. Ok, Fine, Whatever, Who Cares, right? Well, the reason this is odd to me is some estimates put the prevalence at roughly a quarter of the population.
The way I see it, a quarter of the population being kind of quiet or nerdy, sure that makes sense. Maybe this quarter of the population would’ve been called nerds in some circumstances, introverts at kinder times, Highly Sensitive People in other circles, Sensory Defensives in more niche circles… The list goes on and on for how to describe this large chunk of the population that has always existed and may feel more pain but is not severely disabled… so why co-opt autism?
From the perspective of people who are adopting the identity for themselves, there can be many reasons. Autistic internet groups are full of people who were literally abused either by family or classmates, and thus didn’t grow up feeling loved and accepted and these communities are full of that. Some people are looking for reasons that they can’t live up to the expectations they have for themselves. (In my opinion, this is a direct cause of too much internet for a lot of people… both the time it takes away from productivity and the constant visuals of other people’s “perfect” lives that if they went out in public more they would see a lot of people don’t have it figured out either.) Some people want to feel closer to their child if their child has been diagnosed. Especially if the parent is very successful… sharing a diagnosis can mean more hope for their child.
More fascinating to me is why are doctors and scientists ok with this erosion of the term. From all my reading I’ve found numerous reasons from doctors. I’ve read accounts where they say they know for a fact they are over-diagnosing, but that it opens up the doors to so many services, they will do so if they can make a case for it. Other doctors seem to be doing their due diligence and “listening to autistic voices” as they are hounded to on Twitter. One doctor I’ve heard speak described diagnosing a kid with just anxiety or ADHD or something as “parsimonious” and also said she would instantly diagnose any adult because adults “know themselves.” And it seems to me these doctors have a mix of placing high importance on their own work and see an autism diagnosis as a huge gift, and also a load of guilt over their own privilege.
For scientists, the erosion of the term benefits them. There is a ton of money in autism research. The bigger the epidemic can look the better. Of course, this will eventually take a turn and the concept of autism will be so diluted and no longer scary, Congress will not be moved to allocate so much funding towards it. But for now, since the definition of autism is so broad scientists can study socially avoidant mice and call it autism research, even though people with autism are not universally socially avoidant.
For parents, getting an autism diagnosis can be the easiest way to get accommodations for your child. Not that getting the diagnosis is always easy, but once you do get it a lot of doors open that would not be available to those just on the other side of the alleged line. Even children with straightforward learning disabilities like dyslexia are often able to get more support with an accompanying autism diagnosis, even if most of their struggles can be attributed to the dyslexia.
And of course there is the idea that criteria is loosening to pull in more females and people of color, even though the increases (for developmental disabilities as a whole) are mostly among white boys with private insurance.
There is no consensus, no fully agreed upon framework of autism amongst doctors or teachers or parents or autistic individuals. I understand that the way I view the world of neurodiversity is different than many other members of this “community.” That’s fine. But I’m just so sick of needing to hear about autism continuously in every avenue of my life. It’s like that seen in Being John Malkovich where Malkovich enters the portal where everyone has his face and is just saying, “Malkovich, Malkovich, Malkovich” endlessly and it’s kind of a nightmare… this is how it feels with autism. It is just so omnipresent, but each person bringing it up feels it is so unique and special.
What’s more, the folks who are newest to the movement tend to be the most enthusiastic about over-valuing the “nature” aspects and under-valuing the “nurture” aspects of who they are (and who their children are). I hope for their sake and the sake of the next generation that we can return to a more balanced approach. Yes, every child is different and unique, but more often than not the way we parent and react to their feelings can increase or decrease discomfort tolerance, make or break picky eating… if a child is scared we can try to validate them but incidentally send the message, “YES, you SHOULD be scared,” or we can frame scary situations, give context, and teach that feelings are neutral and what behaviors are appropriate.
Honestly, the degree to which it has come to mean both nothing and everything has led me to dig up some of my old diagnoses and sift through my childhood experiences, to try to find why I feel so alone in this. I have benefited from Occupational Therapy due to my autism diagnosis, but aside from that, I am not convinced that I fit within my own ideal framework of autism. I truly believe any efforts from autism advocacy should be to directly benefit those with highest support needs.
My favorite show, Please Like Me, featuring several autistic creators before they had noticed their own autism, was so special because everyone could just represent, more or less, themselves, without this pressure to conform people to diagnoses. I could see myself in those characters and I didn’t need a word for the bond. I did enjoy Josh Thomas’ next show, too, but it was created near the beginning of all this huge wave of change, it is hard for me to believe that shows like Please Like Me could exist again in the future. Maybe it’s for the best, as lots of the characters in that show seemed mostly miserable.
But I just can’t see a reason to believe identities and diagnoses would fix that. Especially since many treatments for autism were created for profound autism. I know people love the idea of one condition to explain every problem in their life. But maybe many people who can fit the diagnostic criteria for autism according to some doctors, but who are otherwise living a life very normal to their peers within the demographic they were born into… maybe many of these folks are better off being treated for depression or OCD or ADHD or anxiety… maybe many of these people just need talk therapy, or just needed more time working on life skills instead of focusing on homework. Maybe ASD treatments would even be a HUGE negative for some of these people who see themselves in the popular conception of autism, or would’ve been a huge negative for them as children. And I know a lot of people think what’s really important is “validating the way your brain is wired”… but that’s honestly what makes me so mad. That should be a guaranty for any person and you shouldn’t need a diagnosis for that validation.