Over the past few years, there has been a lot of discussion surrounding Neurodiversity, Autism, and the nature of disability. I’m sure nearly everyone on the internet is now well aware of the “ADHD/Autistic” TikTok stars pushing out misinformation and the great concern surrounding a generation of kids who are “socially pressured” into appearing to have these neurodevelopmental conditions.
It’s a messy amalgamation of all sorts of fuzzy concepts leading to a minefield of gray zones where everyone is just… angry. Myself included. In writing this, I’m hoping to help advance the conversation by offering my understanding as to why this frustrating confusion persists, and hopefully offer a new perspective to folks who have no choice but to be in it.
First and foremost, I think it is immensely important to recognize that many of the implications of these discussions involve the implied “worth” of other human beings. I don’t think there is a single person living with a disability who has not experienced the look one receives when perceived as “less than,” or hasn’t been treated as somehow incapable of having opinions worth hearing. “What does this person want to do to me?” is the first question through the minds of disabled people when challenges to support are made, and rightfully so.
It is imperative to understand that these discussions are inherently personal and must be treated with that level of respect. With that in mind, I am not interested in hearing any arguments for why identifying “undesirables” should be seen as anything other than an early step toward a little known conflict called World War II. In my experience, so long as you hold in your heart the idea that some are not worth helping, you will find a way to identify those types with a wider net than reality allows.
What I suspect is the reason for that is the subject for a different post. What’s more important here is noting the overlap between the concepts of disability, Autism, and Neurodiversity, as well as how it leads to the many frustrations felt by those who just want help.
In academia, a battle rages on between 2 different models of understanding disability—the medical and social models. The medical model of disability, sees disability as sufficient deviation from the norm as to be incompatible with “traditional” life, which must therefore be rectified. This is the source of a great deal of pathologization of behavior and pushes to “cure” various conditions for which it may not be appropriate. In comparison, the social model asserts that in light of modern technology and understanding, the primary disabling factor of those born significantly different from the norm are kept from engaging in society by social decisions. These decisions can be changed, such as by including wheelchair ramps or developing screen reading technology.
In my opinion, the social model of disability makes a great deal of sense in the modern context for a large number of people, whereas the medical model makes sense in light of human history and evolution, as well as being a better general fit for certain specific conditions. For the overwhelming majority of human history, our technology was unable to allow for sufficient distinction in what is actually happening in the brain. Hell, we’re barely able to do something like that now. Yet the advances we’ve made in our understanding of the brain as it relates to behavior is continuing to reveal fascinating insights, many of which are confirming the “subjective” experiences of people whose perspectives have been historically discarded.
Nowadays, there are many people who still take the medical model as unassailable, but I hope it gives one pause to consider just how many people who live with disabilities adopt the social model of understanding. Moreover, I ask people to consider the historical trend of a complex social reality only becoming apparent through conflict, as was the case for the Americans with Disabilities Act and the Civil Rights Act. It doesn’t need to be that way.
To make things even harder to parse, there’s also the factor of visible vs invisible disabilities. ADHD and Autism have no external markers outside of behavior, opposed to conditions like Angelman or Down syndromes. ADHD and Autism in particular lead the way to a very nebulous concept of what disability “actually” “is”.
Through reading the work of disability activists, scholars, and journalists I understand it as something far more complex than the simplicity of “person can’t walk” or “intellectual disability,” as much as we might be tempted to claim otherwise. Disability can even come down to the timing of a particular need, and that is a factor that is unaccounted for in many people’s conception of disability. This is especially apparent in conversation surrounding the “validity” of long COVID—the lingering neurological symptoms from severe or repeated infection. Prior to the pandemic, I would frequently hear accounts of those who experience Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome. ME/CFS is one of those conditions that I suspect to be related to far far more than just the syndrome itself, and I suspect that the overlap with long COVID symptoms alludes to that (like the overlap between ASD and many other conditions).
With these conditions, the timing of the symptoms affect whether or not a disability becomes visible, and therefore readily apparent. From accounts that I’ve read, the degree of fatigue from someone who experiences Long COVID or ME/CFS can vary in unpredictable ways. This leads to the practical decision of always being prepared for a period of low energy, but it’s that very same preparation that leaves them open to attack by those who are unaware of the condition when they are not experiencing symptoms. In many ways, the impacts of other invisible disabilities like ADHD and Autism are quite similar, if more contextually constrained.
From undergraduate courses through today the vague nature of Autism is one of those concepts that just has me constantly thinking about it. Over the course of years, I’ve developed the opinion that the condition is our proof that what we deem as “normal” is instead a very restrictive notion of the concept, but that’s an essay for another time. What’s relevant here is the discussion surrounding diagnosis.
I’m sure readers are already aware of the controversy around Autism diagnosis, with fears of “overdiagnosis” plaguing many discussions. I believe that this is the challenge of behavior-based diagnosis of conditions, so I don’t expect it to change anytime soon.
When getting my bachelor’s degree in 2014, I delivered a poster presentation on the increasing rates of Autism diagnosis and got to see first hand the spike in diagnoses immediately following a new revision in the DSM. On top of that, there were also the retroactive diagnoses of people who had been missed in the past, leading to big jumps over the years.
Each new revision of the DSM included gradually less restrictive criteria, which also led to a variety of other related conditions—PDD-NOS, Aspergers, Childhood Disintegrative Disorder, etc., to get wrapped up into the broader Autism Spectrum. Admittedly I’m a bit less confident now compared to then that the increasing rates are solely due to changes in diagnostic criteria, but that demands a more complex analysis than I can really offer here. What doesn’t require additional analysis, is that Autism is, etiologically speaking, potentially hundreds of different syndromes under the same trenchcoat. If you’ve met one Autistic person, you’ve met one Autistic person, whose presentation has no bearing on any other.
Suffice it to say there are many factors going on here, none of which come down to these diagnoses being “trendy” in any serious sense—newsworthy edge cases being just that.
I’ve spent nearly a decade working in the support field, and in addition to addressing clinical issues experienced by those diagnosed with autism I have also spent many years analyzing and refining my own understanding of the condition in light of the experiences of those both “officially” and self-diagnosed.
My experience in speaking with professionals regarding suspicions of my own neurodivergence has been particularly enlightening. Let me tell you, after trying to engage with this in good faith, I think the self-diagnosing people are more often than not in the right. They may not know precisely which condition affects them– a factor I suspect may lead to spreading of poorly vetted or misinformation, but I am generally confident in their understanding that there is *something* atypical about their thought processes from the norm. Even if it is Histrionic Personality Disorder.
It may even be true that they may not meet diagnostic criteria for ASD now, but those criteria have changed several times in recent years. Who’s to say a newer definition borne out of a more sophisticated understanding of the condition won’t apply in the future? As it stands right now, the condition is based on behavior.
Yet, I have been unable to have a serious discussion about my own suspicions before being immediately dismissed with some truly baffling statements. Before I could even express that I was looking for clarification, not shopping for a diagnosis, I had been accused of hearing about autism on Tiktok and trying to jump on board the bandwagon. From a professional who knew what I did for a living.
I’ve never even had a Tiktok account, but I did seek out the accounts of diagnosed people alongside those who had self-realized before obtaining the label. I read through studies conducting meta-analyses of common factors of the condition. Hell, I’ve even had several of my physical and personality traits listed as reasons parents wanted to pursue an assessment for their child! Yet from the actual gatekeepers of supposed legitimacy, the stereotypes that “only boys can be autistic,” or “autistic people cannot make eye contact,” remain in circulation. The old stereotypes of Kanner’s Autism continue to rock in the corner of the imaginations of many.
Simply put, there is nothing simple about this condition, and I’m more inclined to accept a complicated truth over committing to a convenient falsehood. Part of that complicated truth involves reconciling the fact that Autism encompasses not only the stereotypical presentations of the condition, but includes a new understanding—one that includes official diagnoses of public figures like Anthony Hopkins, Dan Akroyd, and Elon Musk, not just Temple Grandin.
Steve Silberman’s excellent book on the history of Autism diagnosis, Neurotribes, covers this topic better than I could ever hope to and if you haven’t already I highly recommend reading it. The list of Autistic public figures goes on, but many of these lists I’ve found come with historical speculation of the condition alongside official diagnosis. While I am personally inclined to think that many would be diagnosed Autistic by contemporary standards, I also think it’s important to leave open the possibility that their brains were different in some different way, even if current clinical/diagnostic criteria don’t necessarily account for it.
With that in mind, I want to bring these points to a larger discussion of Neurodiversity. Neurodiversity, in essence, is the recognition that human brains vary in neurological makeup, which can yield significant differences in preferences and behavior.
Neurodiversity is a fact as true as biodiversity. From this fact flows a new neurodiversity paradigm, which works well alongside the social model of disability, and dovetails quite nicely with the modern conception of autism, as noted in the Scientific American article linked below.
You’ll often find people who live with invisible disabilities who have lived otherwise “typical” lives embracing this model, but it’s of course more complicated than that. There is no easy answer as to what constitutes a disability vs a difference, especially in light of the technology we have available to change the game. Nor is there an easy answer for what Autism “is”, given the limitations of behaviorally based diagnoses.
However, I’ve seen quite a lot of frustration between those who take up the neurodiversity paradigm and those whose understanding is more in line with the medical model of disability, and what I see is people taking their personal experience and asserting it as emblematic of these immense and imprecise concepts while bringing their own experiences of frustration into the fray. This is a totally natural impulse to have, but it clashes with this murky wall of definitions & experiences that also gatekeep widely needed support, as well as others seeking that support..
As it stands right now, far too many people are not getting anywhere near the support they need, and when kept at that level of frustration, it’s easy to lash out or look for someone to blame. As such, I see both sides of these arguments as earnest & sincerely desperate, but that’s why I think it’s worth considering who is siding with which group here.
While many disabled people recognize the validity of parts of the medical model, they often find that its strictest proponents seem to be some of the most dehumanizing presences they need to deal with. Just ask anyone experienced with a subtle chronic illness like Fibromyalgia. There are entirely too many examples of a disabled person experiencing harassment or gatekeeping for their disability from those who represent the medical establishment and rather than finding understanding, find another group of people who insist on pity and infantilization. The end result? The expectation of dehumanization outside of disability circles. Disabled people are primed to notice it because of how ubiquitous, and often subtle, it is.
To me, it makes perfect sense to question the underlying philosophy of someone who talks about you as if you’re not in the room, or flagrantly ignores your concerns in conversation when they’re responsible for helping you. Combine that with a more nuanced view of disability and the neurodiversity paradigm makes sense on a logical and an emotional level. Especially for people who fit under a contemporary understanding of Autism but clash with those who rely on old stereotypes.
On the flipside, because of our newer understanding of these conditions, many parents can see “normal enough” looking people getting support while they’re left on a dozen waiting lists for supportive services for their child, uncertain whether their kid will turn out like those adults or wind up institutionalized.
As it is necessary to recognize the stress people with disabilities live with, it is also necessary to acknowledge the stress these families are under in caring for their loved one. I’ve worked with several families who have completed feats I consider superhuman in the interest of high quality caretaking. Even with all the willpower in the world, however, information sources remain rife with misinformation about conditions & treatments, and the traditional forms of support that have historically worked for neurotypical children tend to backfire for neurodivergent kids.
There is a great deal of truth in the saying, “it takes a village to raise a child,” and that is doubly so for children with disabilities, yet the support often evaporates when a diagnosis is made. Even if people are willing, the misconceptions surrounding disabilities leave a lot to be desired. I’ve met a few parents whose families were certainly willing to provide support, but unwilling to deliver support in any way other than what we now understand as abuse.
In the face of a comically inadequate support system, many parents have no choice but to take on all the responsibility themselves and in doing so practically embrace the onset of caretaker burnout.
Caretaker burnout is an insidious phenomenon, in part because lowered tolerance for intense emotions can lead to outbursts that can, inadvertently, lead to a cycle of frustration & anger between caretaker and those they care for. If left unaddressed, caretaker burnout is what ultimately leads to the worst possible outcomes for disabled people and their families.
This is a trajectory I have had the misfortune of witnessing in families with whom I’d worked, often entering a situation after the cycle had begun. To undo it takes time, patience, precision, and far more stress than it would be to provide the needed support in the first place.
Because of that reality, many if not most caretakers compelled to demand help are in some state of burnout themselves, and have in many ways been isolated from their previous support network because they care for a child with a disability. That sudden and lasting isolation is nothing short of maddeningly brutal, in some cases leading to parents becoming their own worst enemy; ultimately exacerbating their need for help. I probably wouldn’t be perfectly pleasant either, truth be told.
So, in light of these factors, I ask that anyone entering discussions surrounding these topics remain aware that there’s a good chance a reactive comment is coming from a desperate place rather than a malicious one. That’s not what I’ve seen happen though. In classic internet argument fashion, we go nuclear and wind up more divided, time and time again. I don’t think it has to remain that way.
In my experience addressing crisis level behavior, self-advocates with lived experience were my best source of understanding the issues my client, and by extension their family, was facing. Neurological phenomena I could not properly conceive of were already being eloquently explained by someone who had no choice but to live with it, but chose to share their story.
I used such information to advocate for my clients who were self-regulating in odd but harmless ways misconstrued as disrespect, or responding to distress seen as insincere. Reading the first person experiences of people with neurodivergent conditions is an invaluable resource that I fear families are ignoring because of their frustration with the aforementioned interactions. This is not helped any by the defenses of neurodivergent people who validly anticipate dehumanization or dismissal.
Of course, no one is obligated to give grace to anyone else, but I’ve found that in doing so I’ve learned a great deal more than if I’d just dismissed the person being rude or even aggressive to me. Many of my favorite discussions have been from disagreements that ultimately bear out to a mutually improved understanding.
In time, I hope to build a safe environment where discussions like these can happen, but that’s a ways off. For now, there is a lot to be learned when you have the mental bandwidth to de-escalate misunderstandings, and it’s good practice to be honest with one’s self about how much of it you have before entering these conversations.
It’s a cruel reality that such bandwidth, on both sides of the aisle, is taken up by simply surviving Why I find it all the more important for more people to get involved.
Each of these topics of conversation is very difficult to pin down with a single definition, overlap in so many different ways, and affect so much of our lives that one must accept that all of this learning is going to be both deeply personal and far from anything black and white. If we want any hope of progressing our understanding of these topics, we must each personally embrace the fact that grey matters.
Sources and Further reading:
https://odpc.ucsf.edu/clinical/patient-centered-care/medical-and-social-models-of-disability
https://www.nature.com/articles/s41588-022-01072-5
https://www.health.harvard.edu/blog/what-is-neurodiversity-202111232645
https://www.spectrumnews.org/features/deep-dive/righting-gender-imbalance-autism-studies/
https://www.spectrumnews.org/features/deep-dive/healthcare-system-failing-autistic-adults/
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