Why Do People Hate Self-Diagnosers?

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The “mixed results” was certainly my experience (and this, from a clinical diagnosis). From my family’s perspective, I was simply Rocket - quirks and all. To them, the diagnosis explained nothing. As my parents would say, "Everyone has issues".

I can only imagine what the response would have been (from those same individuals) if I told them about a non-clinical diagnosis.

As I think about it, my guess is that people on WP are much more supportive of self-diagnosis (than the general population). As the general population would likely have the same thought my parents do (which is, "everyone has issues, get over it").

Which is why, for the most part, I think the greatest value of self-diagnosis is personal peace of mind. For me, it was an "Aha!" moment.

I've told very few people IRL, and there have been "mixed results" ( ) with those I have told. Two had guessed it already, another one agrees that it makes sense, but a few others (two of them medical doctors) don't believe it's true.

Until ASD 's are not diagnosed based on something other than behavior observation

"Self-diagnosis" = "educated guess"
"Professional diagnosis" = "better to much better educated guess"

The claim is that there is a massive amount of self diagnosing Aspie wanabees people in their teens and twenties doing it to be cool, trendy, to make excuses etc ruining it for the "real autistics" . Of course a lot of these people that make this or similar claims and who also insist of professional only are from what I see basing this on conjecture as I have seen no peer review studies confirming this phenomenon. As I was in my teens and twenties in the 1970's and 1980's the phenomenon might be a real one I am clueless about, but I doubt it. From my observation the perception of a Aspie wanabee phenomenon is messing things up a lot more them whatever actual wanabee problem actually exists.

Let me try and explain myself better. I don't object to the concept of self diagnosis. People do it all the time really. We diagnose flu, stomach bugs, colds, pulled muscles, heartburn, and lots of simple things. Also yeast infections and other ailments. We also treat them. We tell others we have them. It's not the concept that I object to, it's the word diagnosis being used. Especially self diagnosis.

I also object to a particular small group I've noticed online who insist that a self diagnosis is exactly the same as a professional diagnosis. Not whether or not someone really has it, that a self dx is the same as a professional dx. Thats my beef with it all.

Fair enough. What wording do you think should be used instead? (And just to clarify, this is not sarcasm - this is a real question. Maybe that would end some of the brouhaha that arises in threads like this.)



Which it is not, at all.

I agree to an extent, but I think your range is a bit off. If you were to categorize quality of diagnosis on a range of 1-10. I would say self diagnosis can go from 1 to around 7 and professional diagnosis goes from 3 or 4 to 10. And I think self DX tops out around 7 due to potential for internal bias than any limitations on ability to learn or understand what to look for. I think people are capable of much more honest and thorough self analysis and education than most generally give them credit for. I also think people don't realize that there are a lot of really poor therapists out there handing out crap diagnoses that aren't worth the paper they're written on too.

I don't know what word I'd use. Something along the line of "I think I have AS" or something like that.

Fair enough. I was thinking more of the majority of self diagnosed on WP then in the general population

I'm glad you added the age qualifier. Any association to Aspergers in the case of people of my generation (same as your generation), in British society at any rate, couldn't be further away from any concept of "cool". Though I must say the media seem to be going through a period of fascination with autism in people up to the age of about 16 - after which stage they seem to lose interest.

That hostility just might arise from the NT type of notions of power, domination, control, superiority and competition that come from human animal heritage. You can find the same thing among Aspies as well. Indeed this is the main reason why I spend little time here these days because I find all the opinion, competition and power games to be annoying. But everybody is unique and generally speaking most of us on the spectrum tend to be more passive and less inclined towards those animal originated traits than NTs. I may be wrong though... that's only my view.



The autistic spectrum is very wide and deep with a lot of shades of gray so there is legitimate room for people to be on the very edge and not really know for sure.



I was self-diagnosed just over five years ago... at the age of 60, but this was confirmed by a psychologist two months later. Oddly enough this came about as I was trying to understand a neighbor who treated me like his only friend in this world and whom I suspected to be autistic (I never did find out). In studying all of the info on autism, I began to see myself staring back out of the page at me.

People know themselves far better than any psych could ever know them and given the right information are in a much better position to diagnose themselves than a psych would be. I sought the psych's diagnosis primarily for my own awareness and got nothing concrete out of it in terms of help (and I still need social help badly, which is what brought me here tonight... too late tonight... maybe another day). That self-awareness that comes with knowing the reasons behind the way we are is worth its weight in gold though.

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This is a long thread and I have only read parts of it, so forgive me if I'm repeating something that's already been said. I have a couple of points to raise: --

1) Would it perhaps possibly be less inflammatory if the universal term to be used was "Self-suspecting" instead of "self-diagnosed"?

Because even the words "self diagnosed", although we know what they're meant to mean, they carry a meaning that can rile people because it's accurate to point out that the word "diagnosed" inherently means that a professional diagnostician was involved. Therefore strictly speaking, in terms of just semantics, dictionary definitions, etc, one can't literally self diagnose.

But one CAN "suspect" one is on the spectrum.

It's legitimate for a person who has done much inner examination, reflection, who knows themselves, remembers incidents etc and have deeply researched as much as a layperson can, to suspect that they fit the symptoms and to honestly say around here "Look, I haven't had a professional diagnosis but I suspect and believe I may fit the criteria, and that's all I've got at the moment."

This could then remove the anger of others who are bothered by the self-diagnosed people claiming that they are for-sure autistic based on their own research, which is clearly the hot button.

If a self diagnosed person instead uses the term and the ideology of being self-suspecting, that's a much more accurate, dictionary-precise and less emotionally provocative term.

I feel Alex should remove the "Self diagnosed" option on that profile drop-down-menu, and replace it with "Self suspecting" -- in my opinion for what it's worth, it could help to take the heat out of this issue, as the idea of "I suspect of myself" is much more neutral.

Nobody can be mad at someone for just honestly saying that where they're at is that they have a strong suspicion about themselves, regarding autistic traits.

My second point that occurred to me:

2) This problem is also something arising from generational issues.

To explain: What we have at this point in the history of any knowledge of autism at all, is a division between recent generations whose autism got picked up on right away, and the older generations who have had no other option than to have to notice the traits in themselves and by this they kind of have to be "self diagnosing" before any other step can be taken.

The more recent generations were born into a time when traits of autism were and are picked up on very early in their lives, due to the fact that the relevant professions themselves know much more about the autism spectrum now than they did before, and awareness means that many children and young people today now rarely get to be very old before someone somewhere has perceived that an autism evaluation is in order, and the young person or child promptly receives one.

For these generations there is a very small, swift "gap" between someone seeing traits in them, and their obtaining an assessment that may lead to a diagnosis.

These children and young people never have to have an experience of "self diagnosing," because the carers around them are the ones who do the "noticing" and then take action with the pursuit of a diagnosis, which can also be more easily obtained while the person is still a minor, too, because the system is there for that.

By contrast, consider the previous generations.

They were born into a time when even the relevant professionals did not have widespread awareness that the autism spectrum is a wide one. It used to be believed that only the classic, severe autistic person was an autistic person. Before relatively recently, if you were a child or a young person who was NOT non-verbal, severely affected, needing special care for everything, then nobody even gave a second thought to other difficulties this otherwise "normal seeming" person was experiencing. People of my generation were completely overlooked in terms of anyone noticing we MIGHT be on the spectrum and therefore lets get this kid an evaluation.

Either that, or some were evaluated for something and given the only diagnoses the professionals saw fit to apply at that time, such as every other mental issue other than Asperger's or ASD. Because it was a time when still yet not many knew that autism could be high functioning and that this person is actually on the spectrum rather than strictly depressed/OCD/schizophrenic or any number of other diagnoses traditionally handed out when nothing else fit the knowledge of the time.

The result of this is that now, many people in their 30s, 40s, 50s and above are recognizing themselves in articles, books or documentaries about autism. And not just "Oh I'm like Sheldon!" or "I rock sometimes and can be socially awkward," but instead deep, deep recognition of multiple issues listed in the diagnostic criteria (not just quirks).

They come from generations where nobody else picked up on it for them, so they have to be the ones who are forming their own opinion that they may be on the spectrum.

Now, nobody is disagreeing that the perhaps then the best next thing to do is get a formal diagnosis to be sure you're not just deluding yourself, or that it isn't something else. But some may never be in a position to pursue that, for the reasons already stated. Others may be able to go ahead.

But before anyone can even book that appointment, they have to have first recognized that there may be a reason to do so, the reason being "I'm noticing that I fit the criteria" -- ie an experience of self-suspecting. Or what we're calling "self diagnosis."

You can't have the "real" diagnosis without first going through a period of making your own layman's "diagnosis" for want of a better word. You obviously can't diagnose yourself formally but you can "suspect" and take those suspicions to the person who can.

But many adults are having to live with just the suspicion (self diagnosis), for many years of their lives, and it's because they have to walk around saying they've "self diagnosed" that there's the friction with the diagnosed people who don't like that.

Trouble is, it's not always a person's fault if a diagnosis as an adult is too expensive or difficult to obtain, and they are stuck in the lost generation.

Which brings me back to my first suggestion which is that maybe some of the friction could be taken out by using the term self-suspecting? It's still accurate, it still speaks respectfully of someone's concerns about themselves, while also not being as inflammatory as the word "diagnosis".

i do not dislike self diagnosers but i do not like it when they forget that they are only self diagnosed.
some of them believe without a shadow of a doubt that they have AS, and then try to be ambassadors to lay people who they misinform about the subjective experiences of being AS.

i have seen people on this board who have argued that the diagnostic requirements for asperger system should be changed because they personally do not fit them. they assume completely that they have asperger syndrome and complain that they are socially successful, have abundant empathy, no sensory issues and an advanced theory of mind along with many other traits that are antithetic to the diagnostic requirements.

then many people who also are also self diagnosed, and in accord with the posters sentiments, post their own endorsements of the posters sentiments, and when a true AS person chimes in with their disagreement, they are then in the minority and the erroneously self diagnosed continue to denigrate the diagnostic process and call the established procedures stupid.

we lose our definitive voice among the hordes of misguided people who have adopted the "identity" of AS due to their own agendas.

those agendas are often based on wanting to project a self image of what they find desirable in their concept of AS (from the snippets they have read).
these include the stereotypical ideas of "eternally youthful looking and exotically beautiful", and "truly humble geniuses who are oblivious to their mental superiority" and "brutally honest people who can raze the unfounded confidence of the smugly complacent with nothing but a simple inability to lie" etc etc.

those types i do not like, but i guess there is no use "raging against the machine". the world is a large place full of people and their momentum will flow like an unstoppable tectonic advance, and the best idea is just to step out of the way.

there are also people who do not have the money to get diagnosed and they have no self image agendas, and it is sad that they can not find an answer to their identity questions, and i will accept their suspicions that they have AS.

another thing i have noted is that autism is apparent from soon after birth (in my case certainly), and for someone to have gone through the normal system for years and years without being sufficiently inappropriate to be taken aside for assessment seems unlikely to me.

This is one of those threads that pops up every few months along with "Why cant I understand NTs" and the ever popular "Are Aspies really the same autistic people?"

I'm one of those who self-diagnosed Aspie after my daughter was diagnosed with ASD but reading the loathing many here feel for people like myself I re-assessed and decided since I (quite easily) pass for NT I'll stick with with being a boring old nuerotypical. Having said that I definitely have autistic traits.

BirdInFlight - thank you for that excellent post above. I haven't quoted it in full here, because as you say this thread is way too long already.

I agree with everything you say there, your approach is reasonable, compassionate and patient. And I think the term 'self-suspecting' is a very good way of defusing the ongoing self-diagnosis argument.

the only people i know are NT (i guess) and none of them are boring. they are all different from each other too.
i do not care if someone is AS or NT or whatever else.

sometimes i think it would be better to have a condition called "unique personality syndrome" and then the whole world fits the diagnosis.
maybe the definition of any personality could be a multi digit code where there are enough variants available to fit more than 7 billion options.
eg: my personality is a g7qq5rbr7bnxx44. what is yours? describe your number please?

everyone is unique.