Is Asperger's overdiagnosed or underdiagnosed?

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If you are not impaired, you do not meet the criteria. If you do not meet the criteria, you should not be diagnosed.

People looking for a diagnosis for identity purposes was something the DSM-5 work group for autism made a point of excluding: If people want to identify with/as the Asperger's label, they are welcome to do so but if they are not impaired they do not need a diagnosis.

The argument that not having a diagnosis would cause impairments if you would not otherwise be impaired is not logical. It is one thing to argue that a lack of a diagnosis can exacerbate existing impairments where a diagnosis might help minimize them. It is another to argue that a simple lack of a diagnosis would actually create impairments.

Well, I think that's a valid point too. Giving myself as an example, I completely fail to tick the necessary boxes on the DSM-IV or DSM-V even though I would tick a large number of those boxes at a subclinical level. I have a full-time job, partner, beautiful cat etc. and I function absolutely fine so far as anyone outside of me knows or cares. I wouldn't dream of calling myself 'self-diagnosed' or seeking a diagnosis at the present time since I truly don't need or deserve it as specified by the current criteria.

However: I have lived a privileged life so far that has rarely taxed me beyond my capacity to cope. E.g. I have never lived on my own. If I lost my partner I have no idea if I'd function or not. Suffice to say that I would end up eating an awful lot of tortellini from packets because my hobbies are significantly more interesting to me than looking after myself. Then suddenly I'd start being able to tick those DSM boxes and might feel a need for a diagnosis, but I'd no longer have the encouragement I require to get myself to a doctor (because I hate doctors as it is) and so I'd find myself in a rut too big to climb back out of. At that point I might be thinking it would be nice if people like me could be assessed in advance of it all falling apart so that I'd have slightly easier access to whatever might be required if and when the time came.

This is compounded by the fact that the DSM is routinely used by professionals such as therapists to define ASD when we all know that it's so much bigger and broader than that little list of criteria. So I recently started seeing a therapist in the hope of figuring myself out a bit better (I'm not overtly impaired, but I'm not exactly chugging along either), but she's determined to ask questions that make no sense to me (e.g. how does that make you feel?) at which point it would again be nice if I could just tell her politely that I don't speak that language and ask her to meet me on the ASD side of the fence. But she was quick to pull out the DSM and use it to dismiss my claim to having a BAP-ish thinking style. So now I'm paying her my disposable income just so that I can educate her on subclinical ASD traits. And if the DSM bar weren't set so high, that wouldn't be necessary since either she would have a broader acceptance of what the spectrum involves or I would have less limited access to professionals who actually know what they're talking about.

Most of the people I see here who talk about self-diagnosis spent months or years researching everything they could find about ASDs to see if it fits. I don't see a lot of people deciding based on a rudimentary description that they must be autistic.

For a period of 3-4 months on this forum I listed myself as self-diagnosed. During that time, I read a significant number of threads in this forum, a handful of books on the topic, and talked to multiple people who know me well enough to say whether such a conjecture makes sense. Getting an actual diagnosis was fairly easy, and at this point I've been diagnosed twice.



I think it would help to verify that these people actually exist. So far, they seem to primarily exist as rhetorical points to argue against people diagnosing themselves. Note that Dr. Attwood himself says that the adults should not be forced to accept a diagnosis, and that



Focusing on self-diagnosis as if it is some kind of problem is a waste of time and energy.

Last edited by Verdandi on 04 Jan 2013, 7:32 pm, edited 1 time in total.

Huh is this social impairments? Some people think that if you have friends and can hold a job, you are not impaired and therefore don't have it but I think that's ridiculous. I mean you have to be impaired in some sense to fit the criteria obviously, but that doesn't mean that people who can get by in a job or have friends aren't struggling if they fit the criteria.

I guess it depends on how you define impairment and the level of impairment required for diagnosis...

Actually, impairment is key in assessments. It is not a second base thing necessarily, but a part of first base, assuming first base is a matter of diagnosis.



This is a different issue, and benign tumors can still be harmful. The criteria for diagnosing a tumor is finding a tumor. The criteria for diagnosing autism is identifying particular symptoms in conjunction with the impairments those symptoms cause.

Most people are not really educated in what "impairment" means and will say things like "you have friends and can hold a job, you're not impaired." This is inaccurate. How many friends do you have? Do you lose touch with them frequently? Do you tend to go through periods of effectively having no friends at all? And working - how long can you hold a job? Does your job cost you so much energy that you are too exhausted to do much else?

Also, it is social, communication, and repetitive behaviors that cause impairments. If you can't pull your attention away from your interests to do things you need to do that is just as much of an impairment as an inability to effectively communicate your needs or interact socially beyond discussions of said interests or strict exchanges of information.

These are examples and not meant to be strict definitions of what qualifies for impairment.



No, it depends on how impairments are described and defined in the professional literature as well as by the diagnosticians who assess you. It does not depend on how people in this forum may choose to define impairments. We can discuss the idea of impairments here and identify them, but it is difficult to say that someone is not impaired just because they can do things some people here can't do.

I'm not sure Kotshka or anyone else is saying that not receiving a diagnosis could cause impairments. I understood it to mean that the impairments might be of a different nature to those implied in the DSM which is very limited in outlook. Even if someone manages to negotiate life fairly well, they can still have a very impaired sense of self and an ASD diagnosis might give them the personal understanding that they need to grow and reach their potential rather than merely survive tolerably.

It's all relative in my opinion. The DSM-V already offers 3 levels of impairment so I really don't understand why they couldn't have included a fourth just for those people who need to find a place for themselves in the world. I would personally never ever want to detract from or undermine the needs of those who are more severely impaired, but I don't see why all needs can't be met.

I'm aware that impairment is key in assessments, I just happen to think that's rubbish. Also, if it were that cut and dry they wouldn't keep researching, debating and re-writing the criteria anyway.

I think people should first be diagnosed as being on or off the spectrum and an assessment done to find out where they sit on the spectrum. Their needs in terms of support should then be assessed separately.

I deleted some parts of your quoted post as they weren't relevant to what I wanted to address. Really I just wanted to clarify that I am personally absolutely not on some quest against self-diagnosis. Even if I didn't call what I did self-diagnosis then it would probably fit somebody else's meaning for that term. If identifying as having an ASD leads to a formal diagnosis or, if a formal diagnosis is not available (edit: or is undesirable), some sense of understanding of self which allows a person to function more as they would like then people are quite welcome to do so as far as I am concerned. My post was a combination of speculation and genuine curiosity as to why somebody would not fervently seek a diagnosis; I actually just didn't get it (edit: basically empathy failure on my part - now some reasons have been posted I understand a little better). I'm sure there *are* some people who have mistakenly self-diagnosed but I suspect they are the minority and they're not affecting me as far as I can see - as I said, my post was just speculation.

So given that this is about diagnosis, we should surely think about 'impairment' in terms of the proposed DSM-V severity levels below. Many assessors will stick rigidly to these irrespective of your more sympathetic and open-minded descriptions of impairments.



So Level 1 is 'Requiring Support' due to "noticeable impairments" in social communication and "significant interference with functioning" from interests and behaviours. I think these criteria could easily be used to exclude people who have friends and can hold a job. For example your question "How many friends do you have?" might easily be disregarded by an assessor who was unsympathetic or reductionist in their approach.

I have my partner as my only solid real-life friend. I have had other friends and I'm still in touch with them on Facebook, but we never speak or meet up. I get along fine at work and am friendly with colleagues, but they don't really know who I am and I get lonely. There's nothing 'noticeable' about my situation to anyone but me.

Which impairments do you mean? Do you mean the symptom list (which is not a list of impairments) or do you mean the multiple pages of text describing each diagnosis in greater detail?

The more conversations I have about the DSM-IV the more it seems that people seem to have a fairly limited view of it. I mean, it is flawed and far from perfect, and many things are diagnosed based on tools and information that go beyond the DSM itself. But people



They didn't include a fourth for people who are not impaired because people who are not impaired do not need a diagnosis. Their needs can be met without giving them a diagnosis they do not need, that can affect their insurance, their employment, and other elements of their lives just because a diagnosis is on record. Many people - some of whom do have impairments - do not really need a diagnosis (although in many cases this is up to them to determine because they do have real impairments). This is not because a diagnosis wouldn't help them, but because of the aforementioned problems that may arise because of a diagnosis, that would exceed the benefits. However, they can still have those issues identified and dealt with with or without an official diagnosis.



Why is it rubbish? Why would someone who does not experience "clinically significant impairments in social, occupational, or other important areas of functioning" (to quote the DSM-IV criteria for AS) need a diagnosis when they can just as easily come to these conclusions on their own?

I never said the criteria were absolutely correct, perfect, or cut and dried. Diagnoses are always judgment calls, but those judgment calls require some kind of objective basis to work from. That's what the DSM criteria provides. That objective basis.



Currently diagnosis is done by doing that assessment. The assessment determines whether they are on the spectrum and need a diagnosis. Look up the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview - Revised (ADI-R). Also, the Gillberg Autism Rating Scale (GARS).

ADOS and ADI-R are considered to be the gold standard in autism diagnosis, and are expected for the purpose of research. They involve identifying symptoms, behaviors, and impairments and determining whether one meets the cutoffs for PDD-NOS, AS, or autism. These tools are more involved and complex than the DSM-IV criteria alone, and have established validity in diagnosing autism spectrum disorders.

Obviously, not all information can be obtained during these multi-hour sessions, and more information may be identified with further work, but the primary needs are probably going to be identified during assessment.

invisiblesilent,

Thank you for clarifying.

This is interesting because these are the scales I had in mind.



With the ADI-R and ADOS that I mentioned in my previous post, assessors are trained in how to use these tools for diagnosis. The publisher makes it very clear that using these tools without training in these tools will not yield accurate results.

Having friends or holding a job does not mean that one does not require social supports. If you just look at the base facts with no elaboration, you are not going to get anywhere with a diagnosis, no matter how many friends you have or what kind of employment.

There is a woman who posted regularly on this forum for a few months who is a member of a women's football team, and is involved in a group that plays guitar (not a musical group, more like a hobbyist group). She also has a fairly high paying job at an electronics manufacturer.

But when you look at her social functioning, she doesn't really socially interact with people in ways that are expected in the workplace. She needed supports in place so that her employers understood that she cannot easily function socially in the manner expected of her, and needed to find her own way to do things. She also opted to not receive an official diagnosis because of the impact it could have on her life. I forget the specific concerns, but her diagnosis is professional, but unofficial.

People aren't just going to ask "How many friends do you have?" if they're skilled at all with diagnosing autism, and if you see a professional who works in this way, you've found someone who is not competent to diagnose autism. Other possibilities include the statement that "you do not act like Rain Man" (something someone reported anecdotally on this forum approximately two years ago).



I would disagree. You have one person whom you consider a friend whom you actually see in the flesh. That is a fairly big sign right there of social impairment. The fact that it causes you loneliness and thus (I assume) distress, which is further support of social impairment.

I won't argue that less knowledgeable clinicians may very well dismiss your concerns. But I will argue that those who are properly trained and knowledgeable about autism would know what to look for. This goes well beyond the DSM and there are people who will recognize your difficulties.

i dont require "support" ergo im not autistic. lol

What do you mean when you say support?

Three years ago, I would have said I don't need support. Four months later, I was starting to understand how much support I needed. Even before I knew I was autistic, I tended to tell people I lived with that I needed some considerations for communication (please directly and explicitly ask me to do things, don't ask indirectly*). Many people actually considered that far too much work to accommodate, but then they'd get mad at me because I never caught their hints even though I told them I don't catch hints.

Edit to add: Another example is that in therapy I need my therapist to redirect me because I tend to drift right back to my interests if given half a chance.

Needing that kind of accommodation is definitely support.

* This is only one example, and not a complete description of all of the support I actually need to function.

Last edited by Verdandi on 05 Jan 2013, 2:32 am, edited 1 time in total.

Same here, although there are socially inept individuals on my mother's side of the family also.

I didn't answer the poll as I don't know how it's outside of Germany, but in this country I actually tend to say it's underdiagnosed.