Have You Ever Changed Your Stance on Self-Diagnosis?

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To be clear, I do not want this thread to turn into a flame war over the validity of self diagnosis. I simply want to hear everyone’s experiences.

I joined WP over six years ago, a naive teenager fresh out of high school. I had done my research, taken my quizzes, and come to the conclusion that I had autism without having been to see a doctor. I supported self diagnosis fully because I was one of the members of that camp. I felt confident in my ability to discern and label my own afflictions without the input of a professional.

Two years later, I saw said professional, completed an extensive battery of standardized clinical tests, and received an authentic diagnosis. I still believed self diagnosis was fine, because my own had been validated. I had diagnosed myself and been right.

Fast forward another four years, I had completed my psychology degree, become a social worker, and subsequently burned out and quit after a long battle with significant mental health concerns exacerbated by my autistic challenges. I had more specialists than I knew what to do with, two to three appointments every week, and providers for services I hadn’t even known existed. All for a person with “mild” autism. I was starting to fully understand the gravity of what having a disability means. It is not a simple thing to identify or to treat. There are so many variables, so many minute differential diagnoses and subsequent treatment plans. These days I have to say that I cannot fully support self diagnosis, because I’ve seen firsthand the complexity of the psychological system, and it is too detailed and too nuanced for any layman to grasp fully. To illustrate, for many months I suspected I may have ADHD. I went to an extensive and detailed evaluation, and came away with diagnoses of generalized anxiety disorder and PTSD instead. Very different conditions that happen to have some subtly overlapping symptoms.

I support exploration, I support suspicion and curiosity about one’s suspected symptoms, I support research and reaching out to communities like this one with questions or concerns or for advice. I support “I think I may have X” but I cannot in good conscience support, “I absolutely have this because I diagnosed myself”. If I could go back in time, I would tell younger me not to diagnose myself, that I could get help and support without needing to declare a label. The fact that I was right is irrelevant. I got lucky.

So, is there anyone out there whose opinion on self diagnosis has changed over the years, in one direction or the other? I’ve never read about this phenomenon so I’m curious. Again, this thread is intended to seek answers to this question, and not to argue with me or anyone else about our views on the topic.

Since I'm only interested in discussing the topic itself, on which my views have not changed, I'm replying in a separate thread To those who take issue with self-diagnosis.

I have not changed my basic view of it as necessary and good workaround because of affordability issues and lack of access to clinicians that understand how autism presents in adults and females.

What has changed is now I think if somebody can afford and has access to competent clinicions they get should get professionally diagnosed. Even if they do not need it now there might come a time when they will need it and it is better to have the diagnosis then first start the process when they are less functional and in financial difficulty.

I have increasingly seen how the stepping stone of self-realisation of AS status has enabled people to see their journey in a far wider and deeper perspective. For many this is liberating. I haven't changed my opinion, other than that I hold the same opinion more firmly now.

One of the core strengths of WP is that it is "a broad church", ie inclusive and welcoming of people no matter what stage of their AS exploration they have reached or wish to reach.

The few hardliners of a few years ago who continually degraded SD members in often nasty ways have long gone and WP thereafter has become a better place and raised its profile as support forum in my opinion.

I don't have a problem with self-diagnosis if the person has done their research & analyzed themselves & their issues. Even the so-called "experts" can be wrong. I was told when I was officially tested for autism that I communicate too well verbally & seem too intelligent to have anything on the autism spectrum. I was then told that I had Aspergers but it was due to Schizoid Personality Disorder instead of anything on the autism spectrum. Aspergers is a form of autism NOT a personality disorder so the quack obviously didn't know what he was talking about. They also did not ask me any questions about my childhood or social issues. I made patterns with blocks, remembered words & order of them, figured out what was missing in pictures, organized things into categories ect. Cost 3 thousand that was well spent, NOT.

My psychiatrist who referred me to the guy diagnosed me as having Aspergers & my docs believe it but I was not able to qualify for services & assistance related to autism because they don't believe my psych was qualified to diagnose me. I have to go through testing. I had to be tested before I turned 21 because in order for it to be a form of autism, my issues have to appear before I turned 21 & the only way for them to know I had those issues before 21 was for me to get tested before I turned 21. I was tested rite before I turned 21.

In a way I was diagnosed by my psych but since it was ruled out when I was tested by a quack & some people don't believe my psych was qualified to diagnose me, I'm not sure if I'm self-diagnosed or officially diagnosed. I spent alot of time learning about autism & analyzing myself & my issues & i also fit in better on this forum than I had anywhere else so I really do believe I'm on the spectrum.

I didn't know one could be self diagnosed. I thought you needed a doctor to have an official diagnosis o_O

It is an expression meaning deciding yourself what condition you have sans medical proffessional. You probably have self diagnosed without calling it that many times. Lets say one day you wake up with a stuffed and runny nose and maybe a sore throat decide you have a cold a take medications based on that belief. In this situation there has been no doctor involved so you did not technically diagnose yourself but the expression “self diagnosed” covers that situation.

If it's on to me I did. I recognized my lack of deep empathy a year ago. I was really scared. Took me a while until I recognized that my lack of emotion towards other people is the root cause of it. One day I googled about improving empathy and found site about Asperger's and found myself belonging to this. Some days later I searched for a help forum and registered here. Because I had no diagnosis I first choosed 'Other autism spectrum disorder' within my profile but once I knew more about Asperger's and autism i changed it to 'Have Aspergers - Undiagnosed'. But I know that several ASD problems have quite different mental reasons and it's a huge difference if you lack empathy or being to empathetic. In the middle of such a wide spectrum are all NT people! Some of them (especially woman) are just the way that they want to be called an aspie as an excuse for acting a little bit stranger or claiming themself having a higher connected brain. What a nonsens. For this I wouldn't give to much on self diagnosis especially of people who don't have strong autistic traits. But I think I would seperate the people according to their special problems in different groups.
I'm not even sure whether an official diagnosis would be useful for me. I think have nearly no problems with Aspergers except if it comes to women. But as long as sometimes totally nice girls crush on me are the things not really hopeless. If it comes to men - the most of them just accept and like me because they count on behaviour and loyality and don't want any feelings of attraction towards them.

Being a relatively new member, I love how WP is welcoming and inclusive of people with professional diagnoses as well as those who do not. I think identifying as "self-diagnosed" is a stretch for me personally. I would never declare that I AM on the spectrum. I suspect strongly that I am for many reasons including every test I've taken scoring very high and my lifelong sensitivities, behavior and challenges.

I have researched getting assessed at an Autism society in my state that also specializes in high functioning adult assessments as well as kids and teens. The cost to me would be a bit over $1,000 for the assessment.

I have no desire to take courses, therapy sessions, etc for such things as improving social skills and I don't need occupational therapies or medication.

Will I seek an assessment? Possibly. It would be purely for my own personal edification and nothing more.

I've become less inclined over time to see self-diagnosis as a good thing. Why? Because "diagnosis" is an activity engaged in by medical doctors and there would be a self-imposed legal risk, if nothing else, to self-diagnose anything, if even a common cold.

However, I think it's fine if one concludes that it is 99% likely they have autism, but not officially diagnosing it. One major reason is that it's fantastical thinking to assume everyone should have access to top-notch medical care, and another is that autism is actually real, unlike the 101 "syndromes" that modern psychiatry has concocted to make sure that anyone and everyone can be diagnosed with something.

One can use the scientific method without needing any official degrees or certification.

When someone self diagnoses, I just think it's someone who is trying to get answers to what is wrong with them and why they are different. It doesn't mean they have autism but they are just saying they know they have something but they believe it's autism. I take self diagnoses as a grain of salt. But the problem I often see is they get so convinced they are autistic, they cannot accept that is what they don't have when they are told they don't have it. They cannot accept another diagnoses they were given instead so instead of going to that community and reading more about it to learn more about that diagnoses, they cling onto the autism label and say the doctor is an idiot and say it's because they are a woman.

I once saw a youtube video of a woman in her 50's and she claimed to have severe Asperger's but all she described was her disgust on people and how she can't stand them and be around them she doesn't mention any sensory issues or executive functioning or routines or problems with reading social cues and trying to figure things out and trying to fit in. Her whole video was her describing misanthropy. She had gone to different doctors and none of them said she had autism and she said it was because she is female. But other commenters bought her self diagnoses, I didn't. I don't know her life, I am only going by what she is saying and she doesn't have any other videos about her life with her self diagnosed autism.


I don't think there is anyone out there who will try and put a label on themselves if they are not having any problems and if their problems are not significant enough to cause them too many issues, they don't try and label it. They know it's a problem they have but they don't bother to try and get it checked out because it's not significant enough or they feel it's not significant enough.

Ton answer the thread title, yes I used to blindly believe any self diagnoses and took it as a fact, now I take it as a grain of salt since there are so many overlaps.

I have definitely become far less "hard line" on this issue than I was to begin with. I think this mostly came from my beliefs about my own psychology. I had been told for decades that social anxiety and depression fully explained my difficulties in life, and I was very paranoid that my consistent feeling that there was something else below the surface driving them was just hypochondria brought about by distorted thinking due to my mental health problems. This is why I never looked very deeply into psychological or developmental conditions prior to autism being suggested by a professional, as I thought I would be prone to just talking myself into something. Of course, this also meant that I didn't join communities like this one prior to getting a professional opinion - I had no contact with anyone self-diagnosed, but I can imagine that I would have thought quite poorly of them.

Like the OP, it turned out that my suspicions were correct, but I arrived there from the opposite direction, so to speak.

And this is exactly what softened my views on the subject. I now understand the diversity of autism better, how broadly and ambiguously it's defined in the diagnostic manuals, how difficult formal diagnosis is for some people to access, and that people often fall through the cracks in the pavement due to encountering poorly-trained professionals (as I did for decades). What matters most are the shared experiences which enable us to support each other, just as Wrong Planet also supports people with conditions besides autism because of how much their lives can have in common with autistic people's. So long as we're always clear about the limitations of self-diagnosis and diagnosis-by-internet, and are prepared to gently speak out if we do see signs that someone has taken a wrong turn, I can't see any harm in treating self-diagnosed members any differently to those with a formal diagnosis. Even if a formal assessment might not diagnose them, there's a good chance they'll be an ally of autistic people.

I do think that people should be clear about the difference between self-identity and diagnosis, not overstate how concrete their diagnosis is, and be very wary that they are not excluding other possibilities that might explain things more effectively or lead to better outcomes. But I'm happy that if the experiences they describe are ones that I can identify with, I will listen to what they have to say and do my best to help them, whatever label they or anyone else might have attached to them.

I really don't have an opinion either way, not that I ever did, so, no, I really haven't changed my views.

I think you are right.
And if it comes to me it doesn't count how my emotional problems are called. At least I know my problems. My last IQ test in internet returned 145 (but internet tests are limted) rdos says 107 Aspie 114 neurotypical. I finally learned eye contact just a year ago.
Yesterday I looked just for fun in my old emotionless way in the eyes of an unfriendly guy who run into me in a disco. I scared him totally with this emotionless and focused look in his eyes.

I've never changed my stance. I think autism diagnoses are too liberally dished out these days, especially for what was formerly known as Asperger's Syndrome. Autism is supposed to be a disability - and a disability is supposed to have such a debilitating impact on your ability to function properly that you require a diagnosis in order to gain access to the necessary support you require in order to function better within society. A majority of people who are self-diagnosed, in my experience, do not have issues that are so complex and debilitating that they cannot properly function within society without support (of course, a minority might have these issues, but in countries like the US may not have had the financial luxury to seek out a diagnosis). Therefore, in my opinion, they do not have a disability, so therefore cannot have autism, which is a disability. They are just socially awkward, may have anxiety, and may have some sensory issues which most people don't have. That does not automatically equate to autism. The other issue is that, when people take these online tests, are they really answering honestly? They may not be answering dishonestly, but maybe they are subconsciously exaggerating their answers as they are hoping to find an answer to what the issues is? Wouldn't you rather find out you have mild autism, than something potentially more serious, like bipolar or schizotypal disorder?

TLDR; no, my stance has not changed, and that is that I personally do not agree with self-diagnosis. If other people do then that's fair enough, I respect their right to an opinion as I hope they will with my opinion.

Perhaps then the term "self diagnosis" should be replaced by something like "self identification" or "self recognition"?


??? Could you give examples of some of these "101 syndromes" that you believe to be somehow less "real" than autism?

"Autism" as currently defined is actually an extremely heterogeneous category whose boundaries are fuzzy and inherently subjective and arbitrary. See, for example, Can Social Pragmatic Skills Be Tested?. The diagnostic criteria have changed quite a bit over the years, will likely change again, and are interpreted in varying ways even by the experts.