Self-Identification is the Future of Autism Assessment
Self-Identification is the Future of Autism Assessment
Instead of trying to reform the diagnostic process, we should work to move past it.
By now, a majority of Autism researchers and clinicians are aware that the existing assessments for Autism are profoundly flawed.
They know the standard evaluation of Autism is sexist, with assessors excluding women for reasons like wearing makeup, having a boyfriend, being superficially polite, or not being fixated on suitably ‘masculine’ topics like ancient Roman history or barometric pressure.
They know Autism evaluations are racist, deeming Black Autistics “oppositionally defiant” or even “borderline” rather than acknowledging any social alienation or sensory pain they’re experiencing, and believing they must be overstating the difficulty they face in moving through the world.
And they certainly know that conventional Autism measures weren’t designed with adult Autistics in mind. Many of us are still asked to make up stories based on paintings of frogs in a toddler’s picture book, when we sit down for assessments at age 20, or 30, or 45 — because all the evaluation methods were written for young kids.
The data has already proven the far-reaching consequences of using such shoddy measures of Autism. People of color, gender minorities, older adults, and women are diagnosed at later ages, and also go undiagnosed at massive rates.
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Instead of finding out that the way their minds and bodies work diverges from the societal norm, and being able to forge communities with similarly neurodivergent people, they are left floundering, drinking themselves through the day to blunt sensory issues, starving themselves because they can’t focus on their schoolwork and remember to eat, dating people they aren’t attracted to and having sex they don’t want to have in a bid to appear normal, working unfulfilling, under-paying jobs in whatever fields they can hold down, failing to ask for help when their fingers fumble, and concealing the moments of confusion, overstimulation, frustration, and unfulfillment that all too often define their days.
Researchers have finally picked up on the fact that there are massive gaps in the scientific literature on Autism, human-sized holes of misunderstanding where the stories of diverse Autistic men, women, and nonbinary people ought to be. Instead of research on Autistic people’s experience with stigma, they have dozens upon dozens of papers about the stigma experienced by parents and caregivers. Instead of collecting meaningful data on why so many Autistics attempt suicide (and how to prevent future suicides), they have data on the burnout and depression of the parents and teachers who work with us.
A growing population of scientists are admittedly interested in fostering a new literature of what they call “patient-driven” Autism research, but they never stop thinking of us as mere patients, the passive receivers of care rather than the leaders of communities and political movements who are the ought to be the primary authors of the studies about us, and the sole determinants of what our desired outcomes should be. Even when they observe that their work could benefit from a greater Autistic perspective, researchers do so from closed rooms, filled with other professionals who are largely not Autistic, wondering amongst themselves what it is that we want instead of learning to quiet their voices and follow our lead.
Many Autism researchers also recognize by now that these pervasive gaps in the assessments and scientific literature were made by design.
Because Autism was originally conceived of as a form of childhood schizophrenia, it was impossible for adults to be identified as having the disability for a great many years. Psychiatrists didn’t bother examining adult populations for Autistic traits, nor did they humanize Autistic children enough to map their experiences onto grown people who had legal protections and were seen as competent.
Though early Autism researchers like Hans Asperger and Leo Kanner did encounter Autistic girls in their initial studies, they didn’t see their suffering as anywhere near as worthy of concern. They excluded poor families, non-white people, gender diverse individuals, people with intellectual disabilities, and anyone else who lacked elite respectability from many of their reports, which went on to inform the evaluation methods, which unsurprisingly kept excluding these populations because practitioners had never been trained to look for Autism in them, or to even care that Autistic people like them existed.
And for the first seventy years that Autism existed as a psychiatric category, psychiatric professionals only ever described it based on how it looked to them from the outside — ever-focused on the disruptions Autistic people caused them and the supposed inconvenience that their disability presented, rather than asking Autistic people how it felt to be themselves.
One of the defining features of the Autistic experience (and one of the greatest sources of real debilitation for us), sensory issues, was not widely noted by the psychiatric literature on Autism until public figures like Temple Grandin finally articulated them in the 1980s and 90s— and she was only believed because she was a credentialed scientist whose innate understanding of sensory-seeking behaviors had proven financially fruitful to the butchering industry.
Even after Grandin’s influential work moved the public and psychiatrists to consider how it actually felt to be Autistic, there remained no mention of sensory integration issues, sensory meltdowns, or sensory-seeking behavior in any of Autism’s diagnostic criteria until 2013, with the release of the DSM-V.
For over a century therapists, medical doctors, school psychologists, psychiatrists, and researchers saw us banging our heads, stuffing fingers in our ears, hiding under our beds, and crying out in alarm whenever ambulances drove past and never thought to ask if any of us might be in acute pain from the input we were receiving. They simply saw a behavioral problem in need of correcting — the disquieted tantrums of a people being tortured by static and engines and perfume and air conditioning units and scratchy fabrics and tight elastics every single day was only of concern because it was disruptive.
We see such external judgements and neurotypical biases reflected in every element of how Autism has classically been defined by professionals. The DSM-III-R (released in 1987), for instance, declares that Autistic people lack awareness for others, and describe us as treating other human beings as if they were pieces of furniture. But this criteria fails to acknowledge how Autistic children are propped up by adults into uncomfortable postures, stuffed into restrictive clothing, and berated into forming tense, artificial smiles. In order to put the non-Autistics around us at ease, we are literally made into living decorations, rather than asked if adopting such positions is uncomfortable for us. And yet we are the ones accused of failing to consider others’ emotions.
The handbook also states matter-of-factly that we lack any awareness when other people are distressed, but Autistic people were never asked whether we actually noticed and powerfully felt (to the point of a debilitating freeze response) when others were unhappy around us. Given the pervasiveness of people-pleasing behaviors, codependent relationships, and a placating “fawn” response among Autistics, it’s quite clear we are often highly attuned to others’ emotional reactions.
It took Autism researchers decades to realize that many in our population genuinely do experience an emotional connection to others, and have a strong longing for friendships —because previously, they never asked us if we did. Instead, they simply assumed that because we struggled to find friendships that we must not have wanted them.
The DSM-IV (released in 1994) states that Autistics adhere to specific, “nonfunctional” routines and rituals — but no researchers ever bothered to ask us what the purposes of things like hand-flapping, item-stacking, and lyric-repeating are. Clearly, such behaviors have a purpose. But when Autism is defined only by how it looks outwardly, complete ignorance surrounding the purpose of a task transforms into that task lacking all meaning.
Even today, the diagnostic criteria for Autism refuses to engage with our inner realities — the DSM-V still states we have the absence of interest in peers, in spite of literally hundreds of research citations speaking to loneliness and a painful longing for friendships being common among Autistic people.
Practitioners point to the high rates of physical and mental health issues among Autistics and claim they desire “patient-driven” research to help them better understand it, yet they remain so patient-unfocused in how they conceptualize Autism that they miss the very cries of longing and alienation from us that fully explain the causes of such issues. They’d much rather see Autism as the pathological root of its own problems than grapple with the role they’ve played in cleaving us off from the rest of society.
Despite all this, even some of the most considerate and neurodiversity-supporting of neurotypical researchers believe that we must reform the process of Autism diagnosis, so that evaluation methods properly capture the disability in women, trans people, queer people, people of color, older adults, and everyone else that has long been overlooked.
They believe that by rewriting the rules by which the Autism label is dispensed, the authority figures performing the dispensing will at last be able to wield that authority properly, determining who belongs to our community, who is worthy of accommodation and accessibility, and who is deserving of societal acceptance and grace.
But the problem isn’t just a few small, forgivable errors in the Autism-labeling process. The problem is the authority of the ones doing the labeling. It’s the gatekeeping of the Autistic identity and the external judgement of our disability that harms us, and that has erased the true diversity of our population as well as decades of our silent suffering.
The solution was never for the likes of Leo Kanner and Hans Asperger or Simon Baron-Cohen to include more Autistic minorities within their subject pool, so that they could tag and observe us more appropriately. The solution was for Autistics ourselves to kick down the walls of our cages, tear the tags from our ears, and move freely in the world not as research subject but as powerful agents, who could find one another, create our own language for our shared issues, and fight together for the social supports that we need.
Though many basically well-intentioned Autism researchers believe that Autism assessments need reform, what neurodiversity really needs is to abandon the diagnostic process altogether. If Autism is a benign, neutral, naturally occurring form of human difference that requires acceptance rather than a cure, then there’s no need to diagnose it as if it were a sickness. And if hundreds of thousands of Autistic women, people of color, queer people, and older people have been able to give a voice to ourselves and find one another without having ever been given a label by a professional, then improved professional labeling is not what we need.
Autistic self-realization is the future of Autism assessment. We hold the collective wisdom, organizing ability, insight, and political power to define who we are. No authority figure should have to sign off on our identities.
Because psychiatrists fail to diagnose such a large percentage of the Autistic population, many Autism researchers now accept self-identified Autistic adults within their subject pool. Within the peer-reviewed journal Autism in Adulthood, self-realized Autistics often make up the bulk of the participant sample, and they have repeatedly been found to be indistinguishable from their formally diagnosed peers.
A growing body of research now also considers the presence of Autism-spectrum traits as qualifying for inclusion in many Autism studies. The data makes it quite obvious that Autistic people exist within all human groups, spread all throughout the world, and that a great many people have experiences in common with us who have not been formally diagnosed. This itself reveals that a formal diagnosis is hardly necessary, and that a psychiatric paradigm of accepting self-identification is inevitable. The researchers are increasingly already doing it.
In embracing the self-realization of undiagnosed Autistics, we can also consider the path walked by other marginalized groups who were once deemed as mentally ill. In the 1970s, LGBTQ people lobbied vigorously to have homosexuality removed from the DSM, and in 1973 the American Psychiatric Association conceded that experiencing same-sex attraction hardly deserved to be considered a mental disease.
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This was just one small win in the long battle to have queerness accepted as a completely benign, neutral, naturally occurring form of human difference. Once homosexuality was no longer shrouded under the stigma of mental illness, it became more broadly possible for gay people to openly discuss their feelings, to express their desires, and to build community alongside one another. To depathologize queerness was to liberate it. No liberation for Autistic people shall be found from within a pathological frame.
Transgender history serves as an even stronger parallel. Until 2013, it was necessary for any trans person seeking gender-affirming care to be diagnosed with Gender Identity Disorder, as it was deemed in the DSM. To go on hormones, apply for surgery, or even change one’s name, a trans person had to be subjected to a battery of psychological assessments, endure sometimes years of in-depth talk therapy, perform their target gender without medical aid to a degree deemed suitable by their therapist, and earn the authoritative approval to become who they were. Numerous trans women were denied affirming surgeries for things like being interested in women, or for not being attractive enough by their therapists’ standards; trans men were denied the right to be themselves if they were gay.
But trans people organized doggedly to oppose this unjust psychiatric gatekeeping of their own identities, arguing that an external authority figure could never know them so well as they knew themselves. This has led to the widespread adoption of the informed consent paradigm, at least here in the U.S. Trans people are no longer expected to prove their identities to a therapist; instead, we can declare who we are freely, and trained medical staff are then obliged to help us identify the care that works best for us.
So long as transness was seen as a mental disorder to be carefully assessed and diagnosed, thousands of us were always going to be restricted from getting to live as the people we were. It was a cruelly difficult and drawn-out bureaucratic process, predicated on the idea that we were ill, and a rare deviation, and that we could not be trusted to figure out our genders for ourselves. The right to self-identification was our liberation. For Autistic people, it will be the same.
The move toward self-assessment of Autism is already underway. After my book came out, I started hearing from countless Autistic people who told me their therapists gladly signed off on their Autistic self-realizations. Rather than being subjected to a battery of expensive, demeaning evaluations at the hands of a psychiatrist, they’ve simply shared with a trusted counselor that they know who they are, and a growing number of neurodiversity-affirming counselors are happy to agree with them.
Some of these Autistic people avoided formal psychiatric assessment because they do not wish to be marked permanently as disordered, and subjected to a variety of legal, economic, medical, and societal injustices as a result. Others cannot afford an official assessment or fear most psychiatrists being unfairly biased against them because of their gender, sexual orientation, or race.
But just as many of these self-realized Autistics simply feel that their own personal reflection, private research, and consultation with a therapist is enough. They haven’t taken the matter of self-diagnosis lightly. Many of them devote years to self-discovery before finally embracing the Autism label, and having that label re-affirmed by a counselor who knows them and trusts their judgement.
My book Unmasking Autism is widely read by neurodiversity-affirming therapists, who tell me that they’re committed to learning more about how neurodivergent people actually think and feel. Rather than approaching potentially Autistic patients with the assumption that they are defective or lack competence, these practitioners simply offer information and resources to their clients, service as a sounding board for all their concerns, and support them in arriving at whatever identity feels right for them.
This is much the same role that an affirming gender therapist performs for trans (and questioning) clients today. They are not skeptical of their clients’ perspectives, and they don’t seek to distinguish the true trans folk from the confused or the fakers. Their job is to provide mental support as their clients embark on a gender exploration journey. Any practitioner who is still performing harsh, authoritative gatekeeping of trans identity and restricting patient access to healthcare in this day and age is akin to a conversion therapist. The same can be said of psychiatrists who deny self-realized Autistic people their identities — and the access to accommodations that comes with it.
Even many therapists are themselves self-realizing as Autistic these days, and because being formally diagnosed while practicing psychology could risk them their careers, a large number do not pursue it, choosing instead to subtly signal to their patients that they are safe, or quietly listing themselves on sites like NDTherapists.com.
When I tell people that I’m not just in support of self-diagnosis, but that I’m actively averse to formal diagnosis being required, people sometimes respond with outrage, asking me what Autistic people who require legal protections or disability benefits are supposed to do without a slip of paper from a psychiatric professional. They presume I’m saying Autistic people should not seek formal accommodations such as extra test-taking time, work-from-home options, the ability to use stim toys at their desks, Medicare benefits, or a medical marijuana card.
But they are misunderstanding the role performed by the psychiatric professional. An Autism assessor is not a benevolent figure who gives Autistic people access to accommodations at school and work, legal protections, and medical care — no, a psychiatric professional is a person who restricts access to these things, for they have the authority to determine who is deserving of such supports and whose struggles they disbelieve or don’t think merit assistance. The psychiatrist is not the bridge between the Autistic person and resources. The psychiatrist is the troll that blocks the passage with riddles and a hefty toll.
Such gatekeeping is not necessary. A growing number of professional organizations provide disability accommodations to their employees without demanding any formal documentation. One of them is Humanity United, a large philanthropic organization I delivered a talk at a few weeks ago. At organizations like these, employees can identify themselves as neurodivergent and request any unique accommodation they need — things like the ability to skip workplace social events, a dimmer switch for their office lights, the ability to communicate with their boss over email rather than on the phone, or a more fidget-friendly chair.
Organizations can also do away with any gatekeeping based on disability whatsoever, and extend flexibility to any employee who needs a different schedule, a modified workplace environment, or other beneficial tools, no matter the reason. This might sound a bit pie-in-the-sky, but it’s actually the way most organizations already handle the majority of small accommodation requests made of employees.
When I decided I needed a standing desk, for example, I didn’t have to prove to anyone at Loyola University that I had a hip issue that was exacerbated by sitting all day. My department’s amazing administrative assistant Nancy just asked me if I wanted a standing desk, the same way she asked every new full-time employee, and I got one. Anybody in the office who wanted one could get it. A colleague of mine whose body temperature runs very hot was able to move to a cooler office simply by asking her boss. If we can extend accommodations so casually to people with completely banal physical complaints, we can treat Autism as a completely unremarkable form of human difference deserving of flexibility, too.
By embracing Autistic self-identification as the ultimate authority, we can also address the shortage of trained evaluators that currently exists and is projected to worsen. Seeking out a specialist in Autism assessment isn’t just costly, it’s time-consuming too, and so many within our community must cope with massive delays in getting the resources that we need.
But if all that we needed was to self-declare our Autism and have it signed off by any therapist, we could file for disability benefits or legal protections with far greater ease. This means we’d get plugged into necessary supports sooner, and would be less likely to tumble down the spiral of burnout, social alienation, unemployment, poverty, and suicide ideation far too many in our community plunge into.
If I’d have gotten disability accommodations the moment I first voiced that I was Autistic, I could have avoided multiple years’ worth of meltdowns at work, and I wouldn’t have ever been expected to perform duties that I’m not capable of, such as informal networking and cold-calling prospective students to “advertise” our programs. If I’d been less lucky, I could have been fired for refusing to complete tasks like these. For many Autistic people, the right to self-identification could keep them in school, housed, employed, and fed.
I believe that in the short term, we could easily switch into a paradigm in which Autism is ‘diagnosed’ just as effortlessly as my Nurse Practitioner ‘diagnosed’ me with an endocrine disorder when I told him that I was trans. My diagnosis was nothing but a formality made for insurance billing purposes; it carried with it no stigma or any indication that I was unwell, it was not gatekept, and it allowed me to navigate my healthcare needs with power and self-possession. It was efficient, cost-effective, and humanizing for me to get to define myself as a man. Rather than attempting to restrict patients’ access, my NP took his formal authority and placed it into my hands.
There is absolutely no reason that Autistic people cannot be treated in the same way. We know who we are better than psychiatric professionals do; we have had to create an entire literature on our inward experiences and generate an entire political self-advocacy movement out of whole cloth, because the researchers who studied us lacked any valuable insight on our inner experience. We created the widespread social revolution that has led to us being seen as ordinary human beings; we’ve written the books that describe what our lives our like, made the public aware that we don’t need to be cured, and gotten better depictions of ourselves put on TV screens.
Like our gay and trans siblings who rejected pathologization before us, Autistic people are seizing control over our own destinies, and defining for ourselves who we are and who belongs within our community. Psychiatric practitioners will soon have to live in the new world we are building, whether they like it or not.
I wonder what a liberatory process would look like that also helps autistic kids and adults who might not be able to self-realize. For those that might not have the introspective or other skills that might be necessary to know they are autistic and what care and accommodations they need. My mind's going to a community care based model where it's autistics helping other possible autistics get connected to resources. Curious to know what you think, Devon!
I have been thinking along these same lines for a while—including the analogy with the Trans experience. (I’m a philosopher and I’m finding Trans Philosophy an invaluable resource for thinking through what an Autistic Philosophy might be.) Thanks for articulating this position so clearly.