The problem with "self-diagnosing" Autism
A psychologist's take on a harmful Social Media trend
In the era of social media, echo chambers and instant access to medical information, “self-diagnosing” neurological conditions like Autism has become a widespread trend. But what might seem like a harmless act of self-discovery to some, can have unintended harmful consequences. Not only does it risk leaving the “self-diagnosed” person blind to the true causes of their struggles, it also risks undermining the credibility and safety of the autistic community.
Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition that causes impairments in areas like social communication, sensory processing, cognitive/behavioral flexibility and emotional/executive functioning - and especially for adults - can typically only be reliably diagnosed as part of a multi-faceted clinical interview conducted by specialized professionals.
These diagnostic experts in adult Autism know how to identify relevant traits unbiasedly and have enough experience to confidently differentiate autistic symptoms from comorbid and ASD-mimicking conditions (such as other developmental disorders, social anxiety, depression, obsessive-compulsive disorder, trauma-related responses, “giftedness”, a long list of personality disorders and much more).
Since most Autistics tend to present a messy combination of multiple overlapping clinically relevant variables, it’s highly unlikely (for reasons we will get into later) that a layperson will be able to accurately figure it all out on their own without any professional input.
For perspective: I have a Master of Science in Psychology and I never thought for a second that my five years of clinical knowledge could compensate for the lack of experience necessary to validate my Autism suspicion by myself.
It’s a specialized field for a reason and I don’t know of a single psychologist who would be so arrogant to just carelessly self-diagnose one of the hardest to catch conditions in our field. We always go to other experts, because we are acutely aware of confirmation bias and the innumerable opportunities for false positives.
In contrast, every “self-diagnosing” layperson bypasses this rigorous "peer review process” completely and instead often relies on unscientific symptom checklists, social media influencers and personal anecdotal evidence alone.
In recent years, this has created a digital Leviathan of self-perpetuating collective confirmation bias, which has spawned a million dollar industry of ASD content creators, “life coaches” and online diagnosis mills, who have a vested interest in telling as many people as possible, that “you are clearly autistic”, so they can get more views and/or sell more books/courses/E-Mail-diagnoses.
But why does it matter that an increasing number of people “self-diagnose” ASD? How does it affect those who were privileged enough to get formally diagnosed?
Unfortunately, not everyone who falls for the Dunning-Kruger infused myth of “self-diagnosing Autism” is a good faith actor. In my (and many others) experience the actually harmful types often become vocal “disability activists” within the autistic community. This influx of people, who usually only focus on “low support needs” ASD, risks creating more incidences of misinformed activism and leads to further silencing of Autistics with “high support needs”.
This has been a problem even before the advent of social media, mostly exacerbated by the controversial Neurodiversity movement, which not only denies that Autism is a medical disorder, but even goes as far as framing everyone disagreeing as villains with “internalized ableism” that deserve to be canceled.
This extremist denial of reality has lowered the threshold of entry to such a degree, that nowadays Autism gets celebrated as some form of quirky “socio-political identity” - meaning everyone, who simply identifies with random ASD traits, gets automatically validated and invited to join the autistic community.
No diagnosis necessary. Just vibes…
I suspect one of the many motivators to appropriate Autism as an identity (instead of faking it as a medical condition, which at least would promise some form of secondary gain), can be found in the often misunderstood and widespread resource oriented framing of “Autism as a superpower”.
And while fostering a positive self-image absolutely is important for us, the overly idealistic and out-of-touch toxic positivity of the widespread Neurodiversity paradigm, often overshadows the clinical reality of Autism as a lifelong disability that profoundly impacts the well-being of 1% - 2% of the global population.
Even for us “low support” folks (often high verbal/high IQ “Asperger’s”) the autistic experience tends to be quite stressful and can go much further than just navigating a confusing world that often feels overwhelming and inaccessible.
The harsh reality of our neurodisability is reflected in higher rates of unemployment, social isolation, personal conflicts, addiction, trauma, trouble with self-care (eating/sleeping/hygiene), dependence, homelessness, self-harm and numerous co-occurring medical/mental health conditions.
It’s estimated that at least half of all autistic people have “high support needs”, which means they will likely never be able to survive on their own, because their clinical (!) symptoms are so severe and their Autism is so disabling and difficult to manage, that they require 24 h care for the rest of their lives.
I fail to see what’s “quirky” about that and - frankly - I take issue with this bizarre misappropriation of our already misunderstood neurological condition.
I wasn’t around when the politically-correct-self-ID-hive-mind slowly started crowding our (former) safe spaces, but I am witnessing daily how they act increasingly entitled to whitewash our multi-colored clinical autistic realities. Their oppressive “low-support-needs-positivity-only” ideology puts every suffering autistic person that needs to vent at risk of “missing the tone” - which used to be an accepted clinical aspect of ASD - but now can result in ostracization in real life “support” groups and instant permabans online.
As a psychologist, I always wonder why humans behave the way they do, but this moralized ableism is still a mystery to me. Most of the people I have confronted for attacking others in autistic spaces for “uncomfortable” autistic traits or “problematic” opinions, don’t seem to be aware of or even willing to acknowledge their own harmful behavior at all.
My most charitable guess is that by sharing the same space as us, just by existing, we trigger some sort of cognitive dissonance in them, because deep down they might realize that their romanticized “TikTok” trope of a “mysterious morally superior gifted quirky superhero” is not based in reality. And instead of engaging in introspection, they subconsciously project and blame us for their discomfort.
Whatever the real reason:
Those now destroyed spaces used to be our last refuge, where we could vent and socialize and be ourselves, without the constant threat of being judged by neurotypical standards or getting attacked for being too different.
And now, thanks to the merging of uncritical “self-diagnosis activism” and anti-medical Neurodiversity propaganda, all of that has changed.
If I ever found a single self-aware good faith Neurodiversity activist, this is what I would ask them:
“If you are so privileged that your “Autism” doesn’t impair you and you feel comfortable judging us for framing our disability as a medical condition that requires support - why are you even in our space? The autistic community has always been a clinical community. If you don’t need support - why are you here?”
Imagine the ego (Narcissism alert *cough*) of authoritatively self-ascribing one of the most complex adult diagnoses in the field as a layperson and then shamelessly entering clinical self-advocacy groups just to bully out every autistic person that disagrees with your unqualified opinions.
I don’t understand why we allow authoritarian ideologues to colonize our spaces and let them dictate the “appropriate” use of language and symbols for our own disability-oriented and politically diverse community.
I also have trouble understanding what modern progressive identity politics have to do with an established developmental disorder. Did I unknowingly join a political cult the second I got my formal diagnosis - or did I join the enemy’s team the second I got my degree in Psychology?
Why can’t Autism be both: A normally distributed neurotype AND a clinical developmental disorder? Why not build a bridge instead of dehumanizing everyone who has a different opinion?
I wish they could empathize with how disrespectful it feels to treat a neurological condition, that causes so much stress to so many people, like a political identity or a mask that anyone can just choose to wear whenever they feel like it.
They don’t understand that for many of us, Autism is not a mask to wear, but a cross to bear. It is a profound divergence from the “normal” majority, a deep condition that shapes our very being. To treat it like a trendy and always positive self-awarded identity, is to desecrate its nature and mock our reality.
The truth of Autism is far more existential and unnerving than any of these lifestyle obsessed “no-support-needs” tourists would ever be able to handle. And I think they know this, which is why they keep focusing so aggressively on positive traits only - and they hate us for reminding them, that they’re not like us.
They don’t know the constant struggle of trying to communicate in a world full of noise, the sharp burden of sensory overload, the constant ticking time bomb of destructive meltdowns, the invisible yearning for human connection that is ever just out of reach. To trivialize our mysterious condition by claiming it without authority or understanding is to spit upon the dignity of those who truly live it.
They call us “fascist” or “elitist” for gatekeeping our diagnosed community from extremist and ableist bullies. But doesn’t their own uncompromising behavior perfectly exemplify why we need to maintain exclusive spaces in the first place?
Because many of these “self-diagnosed” and “self-identified” ideologues do not come in peace. They invade our community not to seek truth but domination; they do not seek support but affirmation. They have turned Autism into a fetish, a soft pillow upon which to rest their fragile egos. But Autism is not a pillow—it is a sword and only those who have been cut by it should have the right to wield it.
These privileged, confused neuro-colonizers try to rob Autism of its tragedy - and in doing so inevitably aim to destroy its triumph that emerges from our lifelong crucible that forcibly shaped us into the proud beautiful resilient weirdos that we are today. If we allowed them to deny us our scars, if we allowed them to silence our autistic realities for their own comfort - what would we have left?
This is why we need to protect the integrity of Autism as a clinical disorder! Not only to increase research and reduce misrepresentation, but - more importantly - to show solidarity with our nonverbal homies, who don’t have the privilege of making their voices heard and who are fighting this invisible battle “in silence”!
So, if you are formally diagnosed and high-verbal, I invite you to join me:
Be loud! Be proud! Be weird! And remind them that we were here first and that we will not cede any more ground to their ableist ideology without a fight!
And while gatekeeping our community is absolutely valid - gatekeeping our diagnosis is not. Luckily, the mundane truth is that a formal assessment is not about gatekeeping, but about clinical accuracy and ensuring that the individual receives the appropriate accommodations tailored to their specific support needs.
That’s it.
If you didn’t make the cut, it’s because your symptoms didn’t match the criteria or their severity didn’t reach the clinical threshold necessary for a diagnosis - not because “they” want to oppress you or because you “know more” than the experts.
And while I agree that sometimes the experts can get it wrong and systemic accessibility barriers can make getting a diagnosis challenging - unfortunately - “self-diagnosing Autism” can never be a solution to your problems.
Why not?
Because you are not diagnosing anything in the first place. Diagnosing is a technical clinical term that (by definition) requires theoretical expertise and practical skills to mean anything. And what’s more: While there might exist conditions that you could reliably self-diagnose with a standardized test as a layperson (e.g. some mood disorders), adult ASD is not one of those straight forward introspective checklist based conditions. There exist no assessment tools for Autism that are reliable outside of the hands of professionals - and you are not a professional!
How do I know?
Because if you were, you’d be aware of the countless blind spots and nuanced complexities of diagnosing adult ASD in general - let alone the foolishness of attempting it by yourself without any qualified external perspective.
Either way - it’s never a real thing:
You either don’t know what you’re doing - or - you’re not doing it, because you know.
Using this term so confidently wrong perfectly demonstrates how the trend of “self-diagnosing Autism” is at best a naive misunderstanding based on ignorance/hubris and at worst a manipulative marketing trick/linguistic cope.
This harmful misappropriation of important clinical terms and labels needs to stop and here is my eternally repeated simple solution to this complex problem:
For everyone, who mysteriously suffered all their life and strongly resonates with critical aspects of ASD, but for whatever reason can not access a formal diagnosis, the already established term “self-suspecting” is the responsible way to go:
Using “self-suspecting” elegantly incorporates recognizing multiple potentially autistic symptoms in yourself (ideally confirmed by others), while maintaining openness to alternative explanations. Instead of arrogantly claiming that you are an expert, this more appropriate terminology speaks to a mindset that respects clinical science and automatically frames every engagement with the autistic community from the perspective of a learner rather than an authority.
Extra bonus: It lets us instantly vibe check you as a potential ally, because
a) actual bad actors would likely try to avoid the painful hit to their ego of using a term that communicates academic humility and
b) Neurodiversity Identitarians don’t have to “suspect” anything anyways - they just have to “identify” and can completely skip that part.
Either way, by this simple switch of terms you are actively helping us to reduce the amount of harmful ASD appropriation and as a result most of us will be way more open to your perspective and more willing to give support.
Win/Win!
This is not trivial. Language creates our social realities and only by prioritizing the correct terminology, scientific evidence and mutual respect, can we ensure that the formally diagnosed fringes of the autistic community remain a safe space of support, authenticity and advocacy for those who truly need it.
Linked Sources:
https://journals.sagepub.com/doi/abs/10.1177/1362361315604271
https://en.wikipedia.org/wiki/Confirmation_bias
https://www.cambridge.org/core/journals/psychological-medicine/article/dangers-of-selfdiagnosis-in-neuropsychiatry/51029ED3B71CA62FC1085EC4A5B2E139
https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect
https://www.healthline.com/health-news/autism-self-diagnosis-tiktok
https://www.thecrimson.com/article/2022/5/4/beth-israel-autism-panel-backlash/
https://www.thetransmitter.org/spectrum/its-time-to-embrace-profound-autism/
https://www.spectator.co.uk/article/the-danger-of-neurodiversity/
https://en.wikipedia.org/wiki/Primary_and_secondary_gain
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/resourceoriented-therapeutic-models-in-psychiatry-conceptual-review/8F57C7C17891B0A89B1968D9FDBBFF99
https://en.wikipedia.org/wiki/Toxic_positivity
https://pmc.ncbi.nlm.nih.gov/articles/PMC9310578/
https://neuroclastic.com/toxic-positivity-gaslighting-and-tone-policing-autistic-people/
https://en.wikipedia.org/wiki/Cognitive_dissonance
https://www.psychologytoday.com/ca/blog/inspectrum/202301/fighting-censorship-in-autism-discourse
https://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/
https://www.scientificamerican.com/blog/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/
https://theautismcafe.com/the-dangers-of-the-neurodiversity-movement/
https://pmc.ncbi.nlm.nih.gov/articles/PMC8992806/
https://pmc.ncbi.nlm.nih.gov/articles/PMC8992806/