Is autism a disabling epidemic, a universal personality domain, or both?
And why it matters to you, whether you identify as autistic or not.
I’ve considered myself neurodivergent since before I understood there was a word for it. That probably wasn’t until the 2010s, even though Judy Singer coined it some 15 years earlier. Psychological terms didn’t tend to percolate into popular discussion quite as quickly back then.
I was a homeschooled, nerdy kid who learned to program in Pascal for fun and spent as much time as physically possible in front of a computer screen back when our parents were more concerned with television addiction than the family PC, which were considered educational or productivity devices.
And even if I didn’t think of my brain as being different before college, what happened during my junior year would change that.
But we’re here to talk about autism, not my brain tumor. (We’ll get to that eventually, I promise.) For the record, I have never been evaluated, nor do I identify, as being “on the spectrum,” but lately I’ve been wondering if I should. And, not to spoil the ending, but after going pretty deep into research mode on the topic, there are reasons to believe that everyone is.
But, and I guess spoiler alert: I’m not qualified to pick a side here. But I do think who is right here matters, when the debate I’m about to discuss gets hopefully resolved.
First, though, some background.
So what is autism, anyway?
(deep breath) So autism spectrum disorder (ASD) is a complex condition with a constellation of features, which can be observed during a clinical evaluation, if you’re fortunate enough to get one at the age it really matters. And an intersectional lens really matters when we’re talking about whether you’re likely to receive any kind of psychological evaluation before adolescence, if ever. Poverty, race, educational attainment, and cultural stigmas regarding disability play overlapping roles in the awareness of ASD’s features, availability of access to diagnostic clinicians, or general attitudes toward acknowledging mental health.
If you’re already the sort of person who surfs the DSM-V for kicks, you might just skip the evaluations part and go straight to the juicy debate, but I knew a lot less of this than I thought I did when I started down the rabbit hole.
A brief history
The history of autism is short, just over a century since the term was coined by Swiss psychologist Eugen Bleuler, from the Greek word autos, meaning "self”. But Bleuler created it to describe a different disorder entirely, more akin to schizophrenia (a term which Bleuler also invented), and the term would not be formalized with a description similar to our modern understanding of the disorder for several more decades.
The fifth and most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), published in 2013, updated its definition of “autistic disorder” from the fourth edition nearly twenty years prior. The changes were significant, combining and re-classifying four different diagnoses previously grouped as “pervasive developmental disorders” – autistic disorder, Asperger’s syndrome, Rett’s disorder, and childhood disintegrative disorder – into a single classification with varying levels of severity, formally designating autism as a spectrum disorder.
How is ASD evaluated?
According to the DSM-V, ASD is a neurodevelopmental disorder marked by two key criteria:
persistent deficits in social communication and interaction, including a measurable lack of social ability across multiple contexts: nonverbal communication, including poorly integrated body language and verbal skills; an inability or lack of interest in forming and maintaining relationships; and a deficit in emotional reciprocity, including failures to initiate, share, or reciprocate conversations and interests.
repetitive behavior patterns that are abnormally fixated and intense, an insistence on ritualized, routine or stereotyped activities and movements; restrictive focus which, when broken or distracted, causes abnormal distress; and an over- or under-reaction to environmental sensory input (hyper- or hypo-reactivity), such as an abnormal reaction to, or intense focus on, particular noises or visual cues.
Both of these criteria must be met over the course of the evaluation, and either one without the other is better explained by a separate disorder such as SPCD (social pragmatic communication disorder), which is a more closely aligned diagnosis when the subject displays a social communication deficit but without the repetitive behavior element.
Not only that, ASD may present in any combination of five subtypes: “autism with or without intellectual impairment; autism with or without language impairment; autism accompanying another medical or genetic condition; autism associated with another neurodevelopmental, mental, or behavioral disorder; and autism combined with catatonia”.
These attributes may be detectable at nearly any stage of development, with pediatric screening for ASD markers recommended as early as 9-18 months. However, as a spectrum disorder, there are varying levels of need indicated by severity. If symptoms are not detected early, then evaluation may be complicated by masking, which are learned strategies the subject uses to “camouflage” behavior that they understand to be abnormal as they mature into adulthood; or symptoms may not manifest until a sensory threshold is reached and the subject’s limited capacity is overwhelmed.
This constellation of features, subtypes, and levels make ASD phenomenally difficult to evaluate with certainty unless the features are particularly pronounced, which is also the most straightforward route to evaluation — parents knowing something is “wrong” and taking their child to a specialist.
Risk factors
The etiology of autism is both widely researched and inconclusive, but points broadly to two risk groups: genetics, and environment. Low birth weight, or being born to older parents are risk factors. Chemical toxicity such as heavy metals or pesticides are risk factors, but much of that research occurred before the DSM-V update in 2013. Andrew Wakefield’s infamous flawed study in 1998 attempted to link the MMR vaccine with autism, but was discredited and the study retracted.
A risk factor is not the same thing as a cause, and simple biomarkers remain elusive. And in terms of improving long-term outcomes, identifying autism early and starting treatment is still perhaps most important. For all the risks you can’t control, the one you can is gettin your kid checked out. Which brings us to:
The debate
No, we’re not going to talk about vaccines.
But we are going to talk about how thirty times more people are being diagnosed with ASD compared to 1995, and twice as many since 2013, when the DSM-V designated the spectrum. In March of 2023, the CDC reported that 1 in 36 children have been identified with ASD. CDC declined to address potential causes for the uptick in the brief report, but it did immediately rekindle this long-simmering debate:
Is there more autism because we’re getting better at seeing what has been there all along, and training more clinicians to do the same?
Have we widened the criteria so much that more people are “eligible”?
Or is there just more autism?
That third question begs for deeper environmental research, which aside from vaccines (no) still has more questions than answers. But that hasn’t stopped advocates and researchers from taking strong stances. The Autism Community in Action (TACA) published a strongly worded statement in response to the CDC’s March 2023 report, saying:
“There is no widening of the diagnostic criteria or any other excuses. We have more autism… We cannot ignore this epidemic.”
Simultaneously with TACA’s statement (both posted the day after the CDC’s report), prominent autism advocate and author of Switched On: A Memoir of Brain Change and Emotional Awakening, John Elder Robison, wrote an opinion piece on the medical news publication STAT, saying:
“The main reason we are finding more autism is simple: Clinicians are getting better at spotting what was always there.”
Despite the die-hard platforms these quotes indicate, neither really represents an all-or-nothing claim. Clinicians could be, and are, better at identifying autism’s features in children and adults. And there could also be a group of neurodevelopmental toxins we aren’t fully aware of spreading. I’m the first one to blame everything on late stage capitalism, but this could also be an example of advances in health care actually, you know, advancing.
Nobody likes to be labeled, but identifying something is also the best way to start accruing the advantages of having scientifically studied something and knowing how to start intervening.
Which brings us to…
Debate, part two
I promised you one debate, but speaking of labels, there’s another outstanding face-off in the field of autism research.
Should we be calling it a disorder at all?
This question underlies a surprising vitriol, open hostility and calls for civility between researchers, although what passes for combativeness in academia (shouting at conferences) sounds tame. Even the X/Bluesky disagreements are comparatively mild-mannered: these two people are saying contradictory things, and everyone is being really nice in the comments.
But what they’re each saying is basically the question above. Does everyone have “autistic traits”, and only if they’re pronounced enough do get diagnosed as having a lifelong disability? Or is “autism” a thing some people have while others don’t, and the experience of autism is so diverse it constitutes a spectrum?
This debate doesn’t have quite so much room for gray area. You pretty much have to pick a side, and proponents of Steve Silberman’s book NeuroTribes, which reframes autism as “a naturally occurring form of cognitive difference akin to certain forms of genius,” are definitely making the former argument, fueled by researchers like Dr. Darko Sarovic, who presents autism as a “non-pathological core personality domain.”
And while everyone is in favor of de-stigmatizing autism, the backlash against “everyone is at least a little autistic in some respect” comes from advocates and parents who say that the personality trait approach to autism underrepresents their very real experience of caring for, or being, a person with, pronounced autism.
For them it’s literally a question of identity and values. It’s the knowledge that they are fundamentally different in the ways that makes them autistic, which is not represented by those who present autism as one or more personality traits that humans universally share, just perhaps to a lesser degree that makes us “neurotypical.”
My takeaway
The word “us” there might give you a hint as to where I think I stand on the subject, but as I said at the start, I’m not qualified enough to diagnose even myself, and as someone who’s highly introspective about my own interiority, the lack of certainty is another indicator. I don’t think the “Big Five” traits are about to get a new member, and my own neurodiversity scores are ambiguous at best.
Clearly, identification is the key event that leads to seeking treatment. Autism is of growing concern because more people identify with it, not just because we have more clinicians seeing it in children. Identification is so dependent on socioeconomic factors that include race/ethnicity, age, education levels in parents, all the same inequities that plague the modern health-care system. Even evaluating disability solely through an ableist lens may omit critical factors that only become apparent when layers of bias and discrimination are acknowledged and addressed.
Autism’s relative newness as a well-defined field of study has created an age disparity as well. A “lost generation” of adults who were not diagnosed as children, but discovered their autism later in life through community engagement, social media, and self-reflection, has spawned a wave of advocates and activists calling for recognition and understanding. The role that social platforms play in self-diagnosis has not been overlooked by researchers, and Tiktok trends and content from mental health influencers has been the subject of comment by experts as teenagers and adults consume disability-related content and begin to self-identify with disorders.
Nor is this necessarily a bad thing, because job one is identification! Social media influences may be closing the awareness gap for parents, teens, and adults, as long as the information consumed is reputable, and the diagnosis is agreed upon in conversation with a therapist.
And someday I hope we find out to what extent labeling and identifying mental health disabilities can be in dialogue with the view that all neurodiversity are natural dimensions of the variability of human personality.
I appreciate how in-depth you went in this piece. So many angles to look at. I want to add that the criteria you gave for being autistic is for men and not women. The separate tests are important because women/girls have been underdiagnosed for so long.