the issue of self diagnosis

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Any assessment for Asperger's (or ASD per DSM V), involves a considerable amount of self-assessment, subjective assessment by either a parent or a close friend, and a subjective assessment by a psychologist (hopefully specializing in ASD's). Various "tests" are also given, which are also quite subjective in nature.

There aren't that many "objective clinical findings" which would point to a conclusive diagnosis of Asperger's (or of Level 1 ASD), unlike within "classical autism," within which there are hallmarks which serve as "objective clinical findings."

I, myself, have a history of both "classical autistic" symptoms (before the age of 5 and my acquisition of speech) and Aspergian-type symptoms (at age 5 and above, after my acquisition of speech). I had some "objective clinical findings" before the age of 5; primarily subjective findings afterwards. There were enough "hallmarks" of autism for me to be diagnosed as autistic at the age of about 3 or 4--at a time when autism was defined much more narrowly than it is now. It carried a very poor prognosis--so much so that it was recommended that I be institutionalized.

I believe my whole manner of social interaction emanates from an Aspergian base, though I believe I adapt at least fairly well to the "outer world." I use odd humor. That I'm thoroughly detached from what most people are talking about, fortunately, escapes most people.

I am self-diagnosed, and don't believe it is worth the cost (at least $500) to obtain a formal diagnosis. It wouldn't serve any tangible purpose.

I also don't believe Asperger's, at this point, is a really "hip" or "cool" diagnosis. "Rain Man" is a 26 year old movie now. People are still fascinated by "savant abilities"--but only from a distance, and only as a novelty item.

There is some fear of people with ASD's because of their perceived lack of social reciprocation, leading to the impression that they are morally lax as well. There is also the notion that people with higher-functioning autism "make excuses," and are actually cognitively capable of conforming to "real world" standards.

Fortunately, ASD's are somewhat "hip" within the neurological research community--owing to the possibilities which might be realized when more is learned about how "plastic" and "flexible" the brain is.

What makes you believe that? what evidence do you have? The diagnosticians are not perfect but they are trained to distinguish between autism and other differential diagnosis, based on an ever growing body of research. People are not just diagnosed based on being introverted, it is more about not knowing how to communicate rather than not wanting to.

I'm not saying that phsychologists are good or bad. Your point may be a valiid one. I would also think it easy to distinguish between introversion and AS although the two cross boundaries. My understanding is that as a normally functioning adult who has AS there is no treatment for AS so therefore what benefit would there be in seeking a formal diagnosis? When I was young someone very close to me who was bipolar sought treatment for depression from a phsychiatrist and was given ECT and had her life destroyed. For someone with AS who goes to a phsycholist for a formal diagnosis, I just hope that person is suitably qualified to give good advice and treatment, since the phsycholist most likely is NT and may or may not be able to relate to someone who is AS. On the subject of advice, I would just like to add that having AS helps in giving other people with AS advice. However it doesn't follow that that advice will always be the best advice, that someone who is NT has better advice to give.

I have tried several times in my life to get some kind of help or explanation for my issues, and today I met a counsellor (thanks to my NHS GP).

I had already made it clear to both my GP and the counsellor that I was doubtful about the value of counselling .

But the counsellor appeared to be genuinely interested in my life story. She agreed with me that it was unlikely that she would be able to change my life for the better, and she also confirmed that she has no specialist knowledge or experience of ASD. She also seemed to accept my suggestion that autism (in all its forms) is mostly seen as a behavioural problem in schoolchildren which the authorities try to control with pills.

For the first time in my life, I was 'listened to'. I have no expectations of any kind of useful outcome, except that the counsellor herself may acquire some kind of addition to her repertoire of understanding.

It is certainly not solely based on introversion. But as you pointed out, the body of research is still growing. When there is no concrete understanding there is room for error, e.g. misdiagnosis. Psychiatrists aren't always reliable, I vouched for this earlier.
As for over diagnosis being on the rise? It's possible, but doubtful... You are right to call this in question. Over self-diagnosis? Definitely, autism is a buzzword now.

I agree. Finding out we have a diagnosis at times can be so much more liberating than not knowing and wondering..

Wait, why are you self-diagnosed? Didn't they give you a diagnosis when they recommended that you be institutionalized?

My mother refused to believe the diagnosis. This was from one doctor. I believe other doctors said I was "ret*d." My mother decided to "take the bull by the horns" and to treat me herself, with the help of speech therapists a little later. This particular diagnosis was probably never entered onto my "record" or whatever served as a "record" back in the 1960s.

I consider myself to have been possibly "classically" autistic before I was 5, Aspergian after I acquired speech. Obviously, back in the 1960s, despite the actual existence of Han Asperger's article, there was no such thing as an "Asperger's" diagnosis. Instead, at around age 5, I was diagnosed as "brain-damaged/brain-injured," and put in a special nursery school for "brain-injured" kids.

There is no such vague diagnosis as "brain-injured" these days. Therefore, I could say that I self-diagnosed myself as having Asperger's, based upon my clinical presentation, and its similarity (except for the speech delay) to the DSM IV criteria.

There are so many interesting points in here, most of which I agree with, hard to know where to start.

I was self-diagnosed for about three years and now have a formal from a specialist. It cost almost $900 and I just happened by good luck to have it now. I doubt I could ever have gotten it on the public medical system I had been relying on until I came into a small sum of money that allowed me to pay for it myself. The psychologist who I saw on the public system told me she had never diagnosed AS in an adult female and suggested I was seeking a diagnosis due to being "lazy". I never went back, but I had a very bad psychological breakdown from this encounter because I also have complex-PTSD. So that is the kind of services that is out there for people who are poor (most of us), older and seeking a formal recognition (I like that better than diagnosis.). I live in western US, BTW.

Not having a diagnosis made it very hard to find help for the ptsd. No one I tried to talk to could understand how the whole process is different for me than maybe most of the people they regularly see. Now I am getting help from the AS clinic and I feel like I am finally being heard and helped.

Having both a self and now formal diagnosis is VERY helpful for me. As a self diagnosis it started me on making sense of so many things in my life and gave me great relief. Now that I have had it confirmed and I am reading some books the clinic gave me, I can see even more autistic traits that I have that I even thought before. This is a little depressing, but truth always trumps fiction in my book.

I think the situation is completely different for younger vrs older people. I am in my late 50s. I have had many jobs and supported myself earlier in life. Then I crashed. A good part of that had to do with having an unresolved severe abuse from past which I believe is related to my AS. I likely would have not been so vulnerable as I was due to AS. I do worry, like someone posted here, that some kids are getting thrown in the AS box simply because they are not conforming to the tight perameters of public school. I also worry about all the older folks like me who cannot afford a diagnosis or do not have anyone near who has the experience to do it. I believe they are waiting for us to die off so and making it hard to get a diagnosis so we do not burden the system.

An important point about the AS assessment, at least in my case. Facts about me in childhood as substantiated by a parent was an important factor for them in diagnosing me. The RAADS test is both valid and reliable in a science sense, and this is one of a couple of tests that are used for adult diagnosis.

I have heard this talk about it being trendy and all, and I can believe that. But if the person does not really have the condition, I think they are going to have a really hard time keeping it up. It would be like anyone of us trying all the time to be NT. Such people will move on to some new trend soon enough. After all, trends by nature change but neurology does not. Well, OK, it is plastic. That is what learning is. But basic personality traits rarely change in the lifetime of an individual once they are over about age 20.

Even people who have had an official clinical assessment and diagnosis should not speak for others. Everyone has different experiences.

Are most people introverted? And a diagnosis for Autism consists of a lot more than introversion. Have you read the diagnostic criteria? Some people take weeks of assessment and study to finally get a diagnosis. It can be a very long and tedious process for some involving many factors. If it was just about being introverted, a diagnosis would take 5 minutes. If a diagnostic professional is diagnosing someone who is simply introverted as being Autistic, that clinician has no business being a diagnostic clinician and should be sued for malpractice and have his license removed.

How is that unrelated to AS? Do you have a specific condition that makes you sensitive to sound and touch?

How cool... excellent! I think it is good... real good (for you) to have someone who listens to you!

So I'm in a weird middle ground on this issue right now. I had my assessment last week and I'm waiting for the results. I've been doing a lot of thinking about how I'm going to feel if the results come back negative. I think it's a small chance, but it's still something I have to consider.

At this point, I'd say I'm pretty comfortable saying that I'm self diagnosed, at least anonymously and to myself. I've done my research, collected and categorized notes (pages and pages of them), done the self tests (most of them multiple times with varying interpretations of the questions), and spoken at length with several mental health professionals. I can confidently say without bias that I clearly meet the large majority of the DSM-V criteria for ASD. I can say that I clearly don't meet the criteria for alternate diagnoses. This is what self diagnosis is to me. It's informed, methodical, and comprehensive, not just saying "hey I got a high score on the AQ, guess I'm autistic".

If, for some reason, it turns out that I fail one or two of the criteria for the official Dx, what does that change for me? I still see people on wrong planet and other sites struggling with the same problems I deal with every day. Should I just ignore that and try to handle those problems as if I were neurotypical? No. Regardless of how my results come back I do myself a disservice by approaching my life from here on out as if I were neurotypical.

What it will change is who I tell. My wife knows (and for what it's worth probably has fewer doubts than I do). I talk about it anonymously on sites like Wrong Planet, because that's how I've managed to learn about this aspect of myself and how to deal with it. But am I going to go around telling all my friends and family that I'm autistic with a self Dx? Probably not. I could get all self righteous about it, and insist that they accept it. I could lay out my case for why I've decided this for them. But I'm not ready to deal with that. I have enough problems with conflict as it is.

To me, the formal diagnosis is to give me validation and closure. And it's to serve as a credential when I tell others that I'm autistic. It gives me a check against my own biases and rules out alternative diagnoses (the second part of which I already know the results of). But it doesn't tell me that much about myself and how autism fits into my life. It doesn't give me to proper coping tools and skills to deal with my problems as I encounter them. That all comes from my own research and introspection. The formal diagnosis tells me if I am autistic. The self diagnosis tells me how I am autistic.

I don't believe the spectrum has a defining point at the mild end. I think it's more a continuum, especially after reading Attwood's book. He explains that some people have Asperger's traits, but not enough for a diagnosis. So, even with having just some traits, many would benefit from the tools and support from places like WP.

As for most people being Introverts, from books like Quiet (Susan Cain) and other reading, it seems Introverts make up somewhere between 30 and 50% of the population - at least in the western world.

Myself, I'm about 97-98% Introvert (Myers-Briggs) and for the longest time I thought that was the cause of my difficulties, but after doing rdos and RAADS and that 50 question test (forgot what it's called), both the questions and the results tell me that I'm aspie. (I'm still trying to find a reliable place to get tested.)

I may not be high end autistic, but this discovery is not one I'm well pleased about. I'm 56 and not happy to discover that I could have had a better life if only I had been diagnosed 30 years ago. But the flip side is that I've had to form my own coping skills - coping doesn't mean I'm great at friendships or able to climb any career ladder, or even able to find a fulfilling career. It just means that I'm able to 'cope.'

The first thing I thought about after doing the tests is my optimism trait. Even at 56 I still held onto the idea of finding my niche some day. But this discovery has made me feel like my optimism is just as fake as my coping skills. I don't devalue those skills, but the optimism has taken a blow. Even so, I feel that as an unofficial aspie I can at least share some of my experiences and try to be encouraging, even if at times I feel quite discouraged myself.

For real.

In college, I misdiagnosed myself with 4 or 5 different mental health disorders at various times, and a counselor "misdiagnosed" me with repressed sexual abuse. This was before I knew what autism was; at that point, I just had this vague idea that "autistic people don't talk and have no empathy," so I didn't even consider it a possibility.

If I, an autistic person, identified so strongly with all those other disorders, which didn't quite fit, might not someone who has one of those disorders think they have autism? I'm just guessing, but it makes sense that that would happen. Totally probable.

BTW (start tangent): I don't know whether or not I have an official ASD diagnosis from childhood; I haven't asked. The only reason that I might not have a childhood diagnosis, though, is that we were really poor when I was little and I don't think my parents even had medical insurance when I was growing up -- not until dad found his calling in law; he passed the Bar when I was 9 or 10, making him a licensed attorney. Being poor ended abruptly lol.

There's no question that I would have been diagnosed with ASD if I was evaluated for it, though; my life and childhood are kind of classically autistic, and people definitely knew about the disorder when I was growing up. I've spoken to a few family members about me being autistic, and they've all reacted with a strong vibe of: Finally, she figured it out!! and my mom dropped a hint about possible disability benefits I might be eligible for, just a few days after I talked to my sister about it (I haven't even brought it up with Mom yet!)

I want to have an adult autism evaluation done, but I'm having trouble even imagining myself actually taking all the steps necessary to get one... (end tangent)

This is a little embarrassing but I based my 'most people are introverted statement' on a solid memory of researching the topic. I remember a bell curve graph (which makes sense of course) where the x axis was how extreme the introversion and extroversion was. The bars were the percentage of people who hit what level of intro or extroversion. The data indicated that around 51% of people tended to be more introverted. However, most introverts, and most extroverts (at the very top of the bell shape and in the middle of the graph) had around the same level of... social aptitude if that's the word. I googled to find the study so I could cite the source but I couldn't find it. I have no doubt that at one point I read about this study, however I'm not sure how credible the researcher(s) were.



It is very difficult (impossible?) to determine the exact percentage. The article I read stated that it's a 51/49 intro/extro ratio. I shouldn't have based my belief on ONE little study though. My bad.






No I do not. I'm not really sure why I jump at touch and hate excessive noise. It's just that it does not mean that I have AS because those are only two traits that shouldn't completely validate AS suspicion. We're all a little different- everyone has things they like and dislike (food, music, etc). I've never stimmed before, except for arm biting when I was younger... if that's a stim. Yes, I meet some criteria, but I look at this one guy I know and just by how he acts you can be sure that he has AS (he was diagnosed at 7 or . As for myself, it doesn't help me to believe that I do just because I overlap a little. I feel that if I were diagnosed then my potential would be lowered significantly e.g 'I CAN'T learn to do that because I have AS'. It just seems a little silly to categorize myself (and others like me) just because I'm a little quirky.