Listen, are there people that are parading around a diagnosis they gave themselves and spread misinformation? Sure, but the thing about that is: That’s not the majority. Neither are people that are weaponizing their NPD by calling it autism a majority. They are both groups so small that the neurodivergent community usually course-corrects for even with the little science we have about ourselves beyond the first and second level science questions we have about our divergences (because good science tends to be slow). This reminds me so much of the argument that people have about others lying about having a disability to claim benefits. We all had this conversation before about how a small amount of people being shit doesn’t discredit the majority.
There is, still, this very prevalent idea that self diagnosis of neurodivergence is harmful. When people are asked what they think makes it harmful the answers usually thin out pretty quickly to just a general hysteria about “what if it’s something else” which with mental issues…hate to break it to you but most of the coping tools overlap. A decent chunk of the world has some level of covered health care, meaning many people can cover the “is this hormonal?” topic whenever the hell they want. And let’s be real, we live in a world where even that is unreliable because even girls with endometriosis need to self-diagnose for up to a decade before they get the official diagnosis.
What people love to forget is: Even in countries with universal health care like England or Germany, few health care covered psychiatrists are specialized (much less specialized in neurodivergence in women and people of different cultures) and if you want to trust your diagnosis it makes sense to go the private route. You know what the cheaper end of a decent diagnostic assessment costs? 500 bucks. Mind you, that is the cost for getting ONE neurodivergence assessed. Another one easily adds 300 more bucks on the cheaper end unless you get really lucky with finding someone good and cheaper. The average for getting both ADHD and Autism privately assessed is closer to 1200 bucks. Yes, you read that right. That’s what happens when we don’t have enough people specializing in something and a ton of the covered specialists being overwhelmed with requests or with a bad reputation because their specialist status is from ten year old research.
I frankly find it insulting and infantilizing to claim that people who are often grown adults or at the very least in their late teens and capable of critical thought cannot reflect themselves. I’m 26, my friends range in age from 21 to 45 and a majority of them is self diagnosed neurodivergent (because poor people in survival mode don’t have the money nor time to find a needle of a specialist in a haystack of psychiatrists) or they are diagnosed thanks to some act of the universe giving them a connection to a family member’s specialist. And even if you want to focus on how self diagnosis can mess with teens I’d argue that self-diagnosing depression, bipolar or panic disorder can have way more of a self-fulfilling prophecy outcome than the self diagnosis as neurodivergent that is UNIVERSALLY described as a freeing experience.
What I’m trying to say: You cannot shit on late stage capitalism AND people self-diagnosing at the same time. One is the reason for the other.
And you will hear yet other voices say “I understand self-diagnosis but don’t parade it around like it’s an official diagnosis.” And I get what that’s trying to say, I really do, but it gives WAY too much credit to a colonized pathologizing psychiatric complex that has been repeatedly analyzed to death about why you shouldn’t trust diagnoses too deeply. I’ve heard more than enough people being diagnosed with a differential diagnosis just because the psychiatrist at hand went full-bias on them (ask in an ASD or ARFID group how many of them were misdiagnosed with an eating disorder like anorexia or orthorexia for having sensory problems with food). Hell, I’d count myself under that, I clearly have ADHD and ASD is way more shaky to diagnose in me in my opinion, but a psych didn’t diagnose me with ADHD at the end of my assessment to suggest an ASD assessment (a diagnosis I wouldn’t seek any time soon)…so this very much happens within the neurodivergent diagnoses space too.
Neurodivergence usually uses the social model of disability. That is why it’s a freeing diagnosis. All it says is “I’m not weird, the world is just not brain-friendly for my particular brain and I can give myself more compassion about it.” Neurodivergence also leans heavily on lived experiences being exchanged in shared spaces. That is how we even figured out shit like RSD or why we noticed that neurodivergent people flock together. It’s why anyone with a brain capable of not being married to exclusively academic psychiatry has adopted the “peer-review” position that it’s highly likely that someone is neurodivergent if they are surrounded almost exclusively by neurodivergents.
We can discuss all day if people with lighter cases of neurodivergence should be diagnosed differently to the ones with more high needs cases and how the lighter cases might take the focus off of the high needs cases (although I mostly ever hear about this from autism moms and it’s always giving the same Aspie eugenics vibe but in reverse, I don’t think they realize differentiating the diagnoses by severity is helpful in a world turning more fascist right now). We can talk about what alternative diagnoses show up similarly (c-ptsd and adhd are twins with almost the same coping tools). We can yap all day if people are being overdiagnosed or if this is just increasing because of a mix of visibility and a shortening in our attention spans. Hell, we could even talk about how the greater context in which Gen Z has grown up is a post 9/11 world full of bullshit after bullshit that most certainly gave a majority of people capable of feeling feelings some low sense of complex trauma because you cannot possibly grieve all that has happened for the past 20 years.
At the end of the day the negatives of self diagnosis have never and will never outweigh the positives in the neurodivergent space. Even if five fuckheads in a row ruin the reputation of self diagnosed autists and ADHDers for a while. Even if people fake claim disability it never hurt the disabled community as intensely as systemic abelism. And you know what is not only ableist but also classist as fuck? Expecting someone to proof to you that they paid someone else a grand for 3-6h of their time to tell them what they have different in their brain. Believe it or not, degrees don’t teach you how to specialize in a specific neurological or psychological niche and doing it right when there isn’t as much research as there is for something like depression. Y’all need to learn that skepsis doesn’t just apply to the shit that is scientifically proven, it also applies to the methods backed by science that are used and repeatedly called out as not as secure as they could be. There is a damn reason black women are severely underdiagnosed and that happens to be the fault of studies repeatedly not considering how they might present differently in a diagnostic assessment. There is a reason why a diagnosis is much more secure if a long term therapist that knows the patient brings it up to the patients psychiatrist. The actual psych is just seeing you for 2-6h for the actual assessment. And with neurodivergence we’re also talking about a mental thing that most people don’t go to therapy for, so many don’t have that therapist talking with a psych. We only have the psych that cannot possibly have a full view of our brain/life within such a short span.
Stop putting 100% of your trust in the scientific method in a field that is repeatedly calling itself out on being held together by tape and a couple semi-solid theories. I’m not saying don’t trust science, I’m saying that a shitton of people overdiagnose and a shitton of people underdiagnose. Both could have gone to the same university and gotten the same grades and could be equally shitty at their job. An official diagnosis isn’t always accurate (especially if you’re a minority) and especially when we’re talking about something so non-physical compared to something like endo where the diagnosis can lead to life-saving treatment, the diagnosis for a neurodivergence being present or not, I hate to use the phrase, IS NOT THAT FUCKING DEEP when it’s about someone that is low needs ND.
We live in a world where we have a theory for how DID connects to c-ptsd, ptsd and a “normal” brain on a spectrum, while c-ptsd isn’t even an official diagnosis and some people are out here fighting about someone understanding that their brain is different. Majority of self-diagnosers know the alternative diagnoses. And many of us agree that: The difference ain’t as deep as some people paint it out to be. Genuinely. No matter if the actual diagnosis is c-ptsd, bipolar or borderline, all those are still considered neurodivergences. Sure, you can explain away your faults and flaws a little too much with a self-diagnosis, but guess what? You can also blame every wrong thing you do on an official diagnosis. That’s not very uncommon with people who have an official depression diagnosis that happen to also just be plain assholes to people with no ability to self-reflect.
We could get into how the entire system is fucked (both the psychiatric one and the one that keeps people so poor that they cannot get help). We can talk about how certain diagnoses just sound like a natural response of people to what they went through that doesn’t need pathologizing. My point is, if you sit with critical thought about the psychiatric medial system and the carceral nature of what we do to “mad” people, you will notice how genuinely irrelevant it is if your acquaintance thinks they are autistic. If you don’t wanna be around self-diagnosers filter your life accordingly, do your own academic paper about why it’s bad or simply stop yapping into the void, because people will keep doing it. You know how I know? I paid 500 bucks for an assessment to be told I don’t have ADHD but I might have autism which that person could not diagnose me with. A SPECIALIST said the childhood symptoms of ADHD I described were too mild (while their report mentioned that the symptoms my parent reported in the intake forms matched ADHD-typical presentation, entirely ignoring how forgetful an ADHD person is about themselves) and that I’m too organized. Telling me right after I sound more autistic, which I never even fully considered as a possibility even though I HAVE autistic friends and I know how autism can look and feel like. A SPECIALIST I PAID FOR suggested I have a diagnosis that would mask the one I searched an assessment for without realizing that PERHAPS that suspected autism could be the literal fucking reason my ADHD symptoms were milder in childhood. Not to forget ADHD in girls usually presents more internally, so I don’t know what the fuck that psych was on. This is the type of ass psychiatrists pretending to be specialists we are still gambling on when we do actually take it into our own hands to get an official assessment. There is a reason most ND people suggest going to a specialist that has the diagnoses themselves. Guess what? Those cost more for their expertise.
Unless you truly understand the clusterfuck that is getting a diagnosis for most people, sincerely, shut the fuck up. Not everyone has doctors that know a specialist for everyone that works well for everyone. Not everyone lives in the right region that has a covered psychiatrist that also happens to be able to spot the harder to diagnose patients. Not everyone wants to take 500 bucks into their hand a second time after their first assessment was as ass as mine.
I know nowadays a majority of neurodivergents outside of their echo chamber online spaces have understood why self diagnosis is crucial and why some grownass people are throwing it around like it’s an official diagnosis (because to me, 3 years of research for alternative diagnoses and a dozen friends peer reviewing me is my official ADHD diagnosis, fuck you). I’m glad we finally arrived at a point where most people will argue the anti self diagnosers to death in comment sections, because they sound irrational, dumb and removed from reality. Shoutout to the people out there with logic in their brain that can tell how blatantly misogynistic the medical field is and how those same kinds of biases hit the ND crowd as well.
And if you want science backing me up on the “don’t trust a psychiatrist to be correct and that diagnostic report of another person to be holy” — the studies you’re looking for are “Inter-rate reliability of psychiatric diagnosis” aka how often two assessors arrive at the same diagnosis. Let me give you a spoiler: That number is laughable because mental diagnoses are a social construct we came up with to categorize people diverging from the norm (sure, also to help them, but then again, we also had homosexuality as a diagnosis at some point, so the nuance here very much exists).
If you fear self-diagnosers ruining the experience of nonverbal autistic people being heard, then instead of trying to slam dunk on self diagnosers you should maybe fucking advocate for nonverbal autistic people. Just a thought. Your mission should be making invisible problems visible. Not dunking on people who obviously have an easier time making themselves visible.
This was my prolonged rant that had to be put into the universe because I genuinely cannot grasp the bitterness and nitpickiness of curating a very limited amount of risks whenever someone positively brings up self-diagnosis. Hope some of these points help you reflect the topic for yourself and help you with coming up with your own counter-arguments to dipshits that are married to a colonized as fuck DSM/ICD. If you wanna read more on this by someone that frankly knows way more about how to talk about this, I recommend reading this piece from Devon Price from a while back HERE.
PS: If by any chance you are both anti self diagnosis, made it this far in the article and also got mad at me using whatever words I used to differentiate more intense autism from less intense autism…you are the problem with advocacy in general. Same level as non-binary liberals who get more worked up over misgendering than over local police violence. High need, low needs, high intensity, low intensity, bitch we all categorize disabilities based on how they affect others, the labeling in itself is flawed, you know what I meant.
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References
https://substack.com/@drdevonprice/p-149632495
Inter-rate reliability of psychiatric diagnosis (several studies falling under combinations of these keywords)
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