I tend to like autistic individuals, but I hate autistic groupthink. I’ve been berated, banned, and blocked in and from autistic online spaces for my writings on autism. The bullying I’ve experienced in autistic spaces rivals or exceeds any I’ve experienced in schools or workplaces dominated by neurotypical people.
The neurodiversity movement is usually characterized as an advocacy movement that promotes the idea that autism, as well as other neuropsychiatric or neurodevelopmental conditions such as dyslexia and dyscalculia, are normal variations that have always been found among humans. But neurodiversity proponents don’t just endorse that as a statement of alleged fact, they make the normative claim that these differences should be embraced by larger society rather than be subjected to medical or therapeutic treatment.
In reality, the neurodiversity movement is a public relations campaign that emphasizes the many positive qualities associated with some presentations of autism—creativity, increased tolerance for repetition, enhanced empathy, superior ability to master content in specific subject areas, and exceptional memory—while erasing or minimizing the experiences of autistics who are severely disabled. The neurodiversity movement epitomizes groupthink. Let’s examine six of the problems with neurodiversity groupthink that will kill the neurodiversity movement.
1. In order to establish an in-group identity, you must do so in opposition to others who have perspectives that are different from yours. That means boundaries for values and behaviors must be drawn, and those who trespass beyond those boundaries must be expelled from the group. I’ve watched the neurodiversity movement grow larger in numbers and smaller in vision, compressed by oppressive boundaries of false beliefs and a rampant thirst for censorship and exclusion.
The in-group is composed of “good” autistics, the ones who march in lockstep with neurodiversity guidelines. They put the prettiest faces on the condition and promote autism as simply a different style of thinking. The out-group? Those are “bad” guys like former Google engineer James Damore. From the blogs I read, it looks like he’s been expelled from any potential membership in the in-group because he asserted that males and females have different skillsets due to biological differences. That perceived misogyny bars him from being a pretty face of autism. Autistic blogger and author Jonathan Mitchell? Expelled from the in-group because he supports finding a cure for autism. The irony of such narrow margins being set by a marginalized group would be laughable if it wasn’t so tragic.
2. A cornerstone of the neurodiversity movement is the assertion that autism is an exclusively genetic condition. This position is no longer tenable in the face of statistical and epidemiological analysis.
“It’s like a switch got flipped.” Those are the words my primary care provider uses to describe my experience of regression from Asperger’s syndrome to “low-functioning” or level three autism at age 38. In 2014, she’d watched in horror and perplexity as a long series of adverse reactions to pharmaceuticals and other medical treatments stole my ability to speak, read, and write, caused my sensitivity to sound to skyrocket, and decimated the few social skills I’d spent the previous decades mastering. For a long time, I stopped driving and even walking alone, because after my brain changes I’d become lost in the neighborhood where I’d lived for eight years. My genetic composition hadn’t changed. What had changed was my level of exposure to substances my body couldn’t metabolize. My brain, immune system, and microbiome had been transformed.
But, I don’t rely on personal experience alone to conclude that autism isn’t simply genetic. Anyone with the most basic understanding of medicine knows that no known monogenic disorder, which is a disorder caused by mutations in the sequence of a single gene, manifests with the broad scope and variability found in autism. Research has been unable to cleanly link autism with polygenetic origins either.
I’m a bit of a medical webinar addict, and I recently enjoyed a presentation by Craig Newschaffer, PhD, director of the A.J. Drexel Autism Institute. The webinar, entitled Four Things to Know About Environmental Autism Risk Factors, reinforced the obvious. Autism is a disorder that results from the intersection of genetic susceptibility and environmental triggers. This isn’t a subject of debate. It’s an epidemiological fact. Which genes and which triggers remain under investigation.
3. Another foundational belief of the neurodiversity movement, based largely on the erroneous writings of Steve Silberman, is that autism has always existed with the same prevalence we see today. This is clearly not the case. In Neurotribes, Silberman makes a critical error. He conflates the condition formerly known as Asperger’s syndrome with autism. Silberman successfully makes the case that Asperger’s has been part of the human condition, at least in the Western world, for a very long time. Although the authors of the DSM-5 rolled them together, Asperger’s, now roughly equivalent to level one autism, and level two and three autism aren’t the same condition. Research has shown that there are differences in the patterns of brain connectivity in people with the condition formerly known as Asperger’s vs. people with autism. Asperger’s has been around awhile. It isn’t necessarily negative or disabling. Autism—well, that’s a different story.
Neither better diagnosis nor the historical institutionalization of autistics can account for the increase we’re seeing in autism rates. A UC Davis study showed an increase of 600-700 percent in cases of autism between 1990 and 2006. In 1975 there were 193,436 people in state psychiatric hospitals in the United States.1 The population of the US in 1975 was 216 million. In his webinar, Dr. Newschaffer indicated that the current prevalence of autism is 1.5% of the US population. In 1975 that would have translated to 3,240,000 American autistics. But between 1975 and 1984, autism was diagnosed in only 4 of every 10,000 people. I know there were missed diagnoses in the seventies and eighties. I was born in 1975 and was one of them—but over three million missed diagnoses or misdiagnoses, and almost zero documentation of over three million people exhibiting autistic behaviors? I don’t think so.
4. Another problem with the neurodiversity movement is its insistence on the use of identity-first language. That means requesting that people with autism be called autistic, rather than being called, well—people with autism. The reasoning behind this is that as a condition that affects one’s neurology, autism is seen as a primary, enduring quality that shapes an individual’s entire experience of the world. One doesn’t carry autism with them, their autism permeates their existence. I tend to use the word autistic because it’s less cumbersome and more succinct than “person with autism.” My choice of that verbiage isn’t a political act.
We don’t see this kind of over-identification with other neurological conditions. People with multiple sclerosis, epilepsy, or Alzheimer’s don’t engage in tedious arguments about identity-first language. While MS and Alzheimer’s are generally understood to be exclusively negative, some people with epilepsy report intense spiritual experiences that can be interpreted as positive, so the identify-first campaign isn’t simply about a condition’s ability to confer gifts as well as limitations. There’s something more going on, and I think that something more is the persistent misperception of autism as an inevitable and exclusively genetic state.
Once we acclimate to and internalize the fact that autism isn’t inevitable or exclusively genetic, we can stop over-identifying with it. That over-identification sets up boundaries and limits that aren’t helpful. If something is viewed as inevitable, it follows that it’s unchangeable. I’ve achieved an enormous degree of healing since my regression four years ago, and I’m confident that with more time, more nutritional support, more anti-inflammatory supplements, and more restoration of my microbiome, I can return to my baseline.
5. “But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer. “Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet is no more and no less than a collection of causes and conditions. These causes and conditions culminate in certain manifestations, thoughts, behaviors, and experiences at any given moment. We have no inherent, independent, unchangeable, enduring selfhood as such. To cling to a false concept of an inherently existent “me,” especially if any aspects of that “me-ness” can be hurtful to or cause division from others, is a very destructive idea.
6. The neurodiversity movement is culturally biased at best, racist at worst. It’s now well known that autism didn’t exist in Somali communities before Somalians migrated to Western countries. There’s no word for autism in the Somali language. A study shows increased risk of being diagnosed with autism overall, and an increased co-morbidity of intellectual disability (called mental retardation in the study) in children of US-born and internationally born women of color when compared to US-born whites.
The presentations of autism seen in Somali communities and other communities of color are frequently more severely disabling than the autism found among white people. I’ve often wondered to what extent my African ancestry played a role in my regression. Still, I’ve been attacked by white neurodiversity proponents for merely suggesting that experiences of autism vary in severity. They take an almost narcissistic position that presumes that all experiences of autism are identical to their experience of autism. It adds fuel to the abusive dynamics of autistic groupthink.
I’ve read blogs by white Aspergerian autistics claiming that sensory overload is the only reason for meltdowns and self-harm. I have lab results demonstrating that I’ve experienced elevated levels of inflammation and oxidative stress. I know meltdowns and self-harm can be caused by changes in the brain even when overstimulation is absent. When the inflammatory cytokines in my brain are activated, I can be sitting in absolute peace and silence and still feel compelled to smash my head to counter the pain and pressure inside my skull.
Neurodiversity proponents respond to my report with one the following responses: 1. Erase me from the conversation by pretending that autistics like me don’t exist. 2. Tell me that I’m experiencing something other than autism. 3. Tell me I still need to accept myself as is and make no efforts to heal what is clearly a cycle of cell death in my brain.
Mind you, no one in the neurodiversity movement is paying my bills, and no one but me is managing my fractured interpersonal relationships. Nevertheless, these autistic strangers on the internet feel entitled to judge me and condemn my efforts to heal myself of this profoundly debilitating condition. It’s interesting to contrast the norms and values in autistic communities with the norms and values in other communities.
In Deaf communities, it’s perfectly acceptable for adults to choose to have cochlear implants or use hearing aids. It’s also acceptable for Deaf people to reject these devices and rely exclusively on sign language. Neurodiversity proponents offer no similar latitude for adults to make autonomous decisions about how or whether they want to experience autism. Groupthink rules.
What’s a movement to do when its foundations collapse? Will the text under the rainbow-colored brains on t-shirts change from Celebrate Neurodiversity to Neurotoxins are Nifty? I’ll be less facetious for a moment and say that this is a time of serious reckoning for those of us diagnosed with autism. We have to accept that we are the canaries in the coal mine. Our bodies and brains reflect the human fallout of life in a toxic world.
The human brain is so complex that in some cases it can withstand a great deal of environmental modification and still get some of the most critical jobs done. Some changes to the brain enhance it, endowing it with certain gifts, often of an artistic or mathematical nature. Those who advocate in favor of neurodiversity rely on this fact to promote their agenda.
But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.
I propose that autistic people move beyond tyrannical groupthink. We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges. We should make room for more perspectives. We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented. We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing. We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.
We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.