Problems with self-diagnostic tests

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I don't see the point in worrying about others' self-diagnoses, and of course none of the tests are diagnostic at all. Simon Baron-Cohen's *-quotient tests have a lot in them to criticize and are screening tools at best.

None of them will tell anyone whether or not they are autistic, but they do serve as one more hint along the way.

I don't know, this just seems to me to be yet another "people shouldn't self-diagnose" thread, and many arguments have been made against this position.

I do wonder, though: Where do people get the idea that self-diagnosis comes from an AQ score?

I am seeing that the "professionals" are often not very professional. I think psychiatrists are often very impatient with their patients. That to me is a separate issue though. But we shouldn't have the expectation that any psychiatrist we go to is going to have the expertise needed to properly diagnose these problems. It's unfortunate, but psychiatry and in some cases Licensed Clinical Social Work are very broad fields. You have certain professionals with certain areas of specialty. I do think that general psychiatric/psychology practitioners need to have more awareness of these issues such that they can direct people to the more appropriate clinicians if their specialty is not autism. That's been my frustration too; believe me.

If you follow through my entire post I think you can see that there are very real issues when a specific diagnosis is "hijacked" (perhaps not the best term). Diagnostic terminology is always changing - sometimes for the better, but not always. "Idiot" used to be a term to define people with mental retardation. Hardly helpful or appropriate, but while "mental retardation" may be an improvement, it's still not really adequate. So yes, I agree that diagnostic criteria is open to question. There are things that should be included and things that should not. But again, what the APA is trying to do is provide guidance; not to dictate everything that a doctor should be concerned with. There's grey areas so that doctors can be doctors and use their best judgment. Medicine is not an exact science. If we were to try to categorize every possible contingency it wouldn't at all be helpful. Do you want to go to a doctor who only goes by the book, or who utilizes innovative technologies that may not be in the book to give you the best treatment?

"Trust me, it's not going to be a popular social movement to join."

Well when people like Einstein and Bill Gates are included in the movement, who wouldn't want to join?

I'll add that professional dx is not necessarily accessible to people. In the US, cost can be an obstacle for the 50 million people or so who do not have insurance - diagnosis often costs hundreds of dollars, or a thousand or more. For those who do have private insurance, getting a professional diagnosis can mess up their insurance - if they need to switch, autistic spectrum disorders will generally disqualify them from getting new insurance.

Elsewhere, access to diagnosis can be a matter of something like the postcode lottery (in the UK), where living in the right place makes it easy, but living in the wrong place can make it fairly difficult. It can be a matter of whether such services are even funded for adults.

And anywhere, it can be a matter of whether getting a diagnosis would actually be meaningful or helpful in a practical way - if it causes more problems than it solves, why do it?

That's before getting into how unprofessional the professionals can be - one woman reported here that a psych who described himself as an expert refused to diagnose her because she did not act like Rainman. This isn't a black and white issue of "self-diagnosis bad, professional diagnosis good."

Hey thanks for your very interesting post. I can relate to most of what you're saying - particularly with hanging out inside. My mum was always nagging me to go out and find some friends. This caused sometimes some extreme anxiety for me. I didn't know how to do what she was insisting that I do. I think she realizes that now.

I also appreciate you mentioning the dark ages when there was no diagnosis of Aspergers, and as such, there was no treatment or recognition that it was a problem. We (people with similar symptoms) were treated like it wasn't ok for us to be different, and that we should try to conform even if we didn't have such skills. So it's no wonder that we've probably experienced more difficulties than the average younger person with these symptoms who might be getting early intervention help. But there's still a lot of that going on today. I'm not trying to accentuate my own difficulties, but it really needs to be recognized that the reason why many of us older folk are not diagnosed is because there was no diagnosis prior to the 1980s, (in the US and other English speaking countries), and by that time for many of us, we outgrew some of our earlier childhood difficulties. This is true for me. I didn't start having problems again until the 1990s when all this stuff began to resurface as I was trying to have a career. So now here I am recognizing that there's more issues that I need to resolve than just the problems that arose then.

Maybe I should take a look at some of those childhood tests you mentioned.

"I still do the same thing today in various situations."

If you're in a restaurant do you make sure your back is against a wall, or seek out booths rather than tables with chairs? I do. I don't at all like being in the middle of a room.

No. If I'm asked a question I will (under normal circumstances) attempt to answer it correctly, honestly. Doesn't always mean my answer will be correct, truthful, (or even make sense, I'm easily confused when people talk to me) but it does mean I won't wilfully bend test results to make myself out to be something I'm not. That would be silly. And unscientific, although that's a given with online ASD tests. *shrugs*


Calling them (and the other people that regularly get dragged up in ZOMG X is teh aspie!1!! threads) autistic is a good illustration of the type of wishful thinking and wilful self deception you're warning about. Or was that your point?

PrivateEyes wrote:

OMG...YEAH, that's my primary MO! WTF!! !! It's a MUST!! !!

My main problem with the online tests is that they are too vague. Vagueness is the fuel for the fires of both false positives and false negatives. But I think that most people, especially older adults, will do a lot of research beyond online tests before diagnosing themselves with any conditions.

It was my point based on my own tendencies, I guess. I'm aware that I have a tendency towards some sort of somatic behavior. I usually check myself before it goes too far, but there is that potential. But here's the kicker: somatic behavior is apparently common with AS, so it's a damned if you do or damned if you don't situation. You see how complex this issue can get? "Well, doctor, I think I'm an Aspie because I'm somatic. It's all in my head, which indicates I have it."

Well if you and I went into a restaurant to have lunch we'd be fighting about who gets the wall seat.

Corner booth.

One online ASD test cannot determine whether one is autistic or not.

But, after several months of being obsessed with AS, analyzing every detail of my life and comparing it to what I've been reading here, I think it's safe to say that I have accurately diagnosed myself. In fact, I'm probably a whole lot more autistic than I think I am.

You want to join Another 1, Surreal and me in the corner booth and maybe we can talk about it?

The amount of trying to join the group and self-identifying as aspies without actually researching, does vary by social group though. When you have a very introverted, very high proportion of being teased in high school, high aspie/NT ratio social group then it actually does end up with people self-diagnosising without any actual research because they want to be part of the "group" that is finally feeling like there are others around who understand what its like.


In college, I was involved in a social group of this form (still am to some extent). We were the outcasts for being too geeky in an engineering school, those who had been teased throughout all of schooling to this point, and finally had others who had gone through the same thing and were actually treating each other friendly!

This meant, that when people who either had official diagnoses or self-diagnoses from large amount of research started comparing that, then people were actually just taking that AQ-test, pushing their answers in extremes, and then coming back with exactly borderline results and saying how they also were an aspie, when anyone who had researched it deeply knew that they didn't match any of the externally visible symptoms (including obsession levels of passion in subjects). Many of these people would be well described by having developed social anxiety because of their situations in school, but an anxiety disorder didn't make them different, special, and relating to people, so that's not what they wanted.


I have actually seen a lot of false self-diagnosising without actual research. While I fully support people using resources without having seen any psychologists for diagnoses, I can't help but judge people slightly differently when they self-diagnosed, even when I myself was self-diagnosed for years, because of those experiences. I don't mind people self-diagnosing, I want them to actually have an idea of what they're talking about and I need people to say more than "oh, me too!" to get that from them.

Well that's the issue here and why I addressed this post to the older pre-Asperger syndrome crowd, because I think there's a different dynamic going on with different generations. I think I can speak for the older folks here - 45+ that when we were growing up there was less (if at all) cliques for people who were different. If you were in a clique it was a clique of the popular and "normal" people. Those who were different were generally on their own and ostracized. I say "generally" because that wasn't always the case; but certainly nowadays it's easier for a person who is "geeky" or just doesn't "fit in" to,,,well, fit in.

I think another dynamic is that the development of computers created a whole different generation. More technology based, requiring minds that knew programming and other technologies, and society began to recognize that the people who had these talents were generally more systematic than emotional - more like the "geek" than the "freak.". Those of us who grew up pre-home computers lived in an entirely different world. The 80s created the "geek generation" and it suddenly became cool to be different or eccentric. Not to diminish the problems that persist, but prior to the 80s there seemed to be much more conformity, and if you go back 30 years before that it was even more so. So yeah, I can see how people now will want to know more about their personality. Part of conforming is that you are trying to be most like the norm, so you're not so concerned with differences in personality, but how to be more like the norm. Today is so much more refreshing, and I can also understand how some may wish that Aspergers is no longer seen as a diagnosis but a "difference."

How very kind of you.

Perhaps the best position to take is that self-diagnosis is nobody's business except to the person doing the self-diagnosis. Haven't people got anything better to do?

But even talking about it in terms of generations, that's a huge stereotype to be making. It was not /until/ college that /any/ of us saw the ability to fit in, that's exactly /why/ there started being the "I want to be an aspie too". And I've heard older (including 50+) people have similar situations when they went to college, where they suddenly went from the one who was weird and geeky to someone who fit in, because there were other weird and geeky students there for once. In fact, the club that is exactly this clique that I associated with in college has existed since 1974, so 55 year olds actually did involve themselves in actually /the same group that I involved with.

But really, it was a transition shock - these people went from being ostracized and teased constantly for being geeky up through getting to college, and then suddenly there were people, aspies even, who treated them decently. They wanted to be part of the group.




How is it not my business when they do no research, tell me how much they know more than me, and start discrediting /my/ research into the subject because "they're older thus know more about aspergers because they're aspies".

Like I said, as long as people research, then self-diagnosising is /good/.

The problem is when people don't and only mindlessly look at tests that they /are/ being biased about, then they can actually do harm to both themselves and the people who are aspies, whether self-diagnosed or not.
Themselves, because of trying to treat themselves for something they neither have nor have any idea about because they didn't want to bother researching it because they know better than the "experts".
Aspies, because they're now being told how much more 'normal' they should be, and how wrong they are, because look, this person is an aspie too and they know how to function in normal society, why don't you? They literally did a lot of damage to someone I knew because of this, and only now, at least 4 years later, is he starting to come back out of the shell they pushed him into.


I'm not talking about every case of self-diagnosing. I'm talking about the problems that someone in their early 20s has seen from self-diagnosed people who /didn't/ research anything, because that's how they were using the AQ-test.

If someone self-diagnoses and doesn't harm /me/ or a close friend of mine because of it, then its their business. When they do start hurting me, then it becomes my business too if it is because of the identifying as an aspie that they are harming me.


(My background, I self-diagnosed between the age of 12 and 15, read a lot about aspergers, joined here in 2006 when I was going to college and things were changing for me, for the first year of college identified as an aspie, was treated so terribly through other people who had self-"diagnosed" without any research that I stopped identifying as an aspie though remained "not-neurotypical", and then last week at age 22 was given an official diagnosis.)

I don't expect many people even my age, to have had this experience. I'm however sharing what difficulties because of the self-diagnostic tests I have personally encountered. I do feel that as a whole they help more than hurt, and don't think that official diagnoses are always worth the money that they tend to charge when self-diagnosing works so well. That doesn't mean that problems don't come up and don't need to be acknowledged.