Is a Self-Diagnosis Legitimate?

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Ok so SD is all about people validating themselves. great. That makes it all ok then.

You might be a real sweetheart on the inside, but your outer spin on other people's words is obnoxious!

Who said anything about validating oneself?

hush6, repeatedly, in various words. If I remember correctly, the only person on the thread who's expressing great concern about validating him/herself is hush6, who finds that self-diagnosed people somehow reduce the validity of (trivialize) her/his experience. Also the only person who has expressed the idea that somebody wants to be autistic, or claims to be autistic 'cause it's cool.

But I'm sure I'm mud-slinging for pointing this out.

Also I'm mud-slinging by noting that I can't find any statistics anywhere about all these self-diagnosed people running around who have made wrong diagnoses, but I do find that Baron-Cohen and Attwood both have said that people who self-diagnose (or are diagnosed by their spouses) before coming in for assessment are almost always right. They haven't recorded numbers, though. Alas.

I wouldn't say that's completely true. I mean, a lot of the problem is that so many people go through so many years of ineffective and harmful treatment based on massive psychiatric misdiagnosis. This Article suggests that up to 20 percent of anorexics have undiagnosed AS.. and in general, they're going to be some of the more severe anorexia cases, particularly because the treatment will be so inappropriate for someone with an ASD. An autistic girl tossed into treatment with a bunch of cheerleaders is not going to get much out of it. (Yea, I know it's not that simple, but there is a large population of eating disordered models, dancers, and cheerleaders, but the basis for it is so different that it doesn't work. You end up again being the "uncool" kid.. in therapy. I've multiple times mentioned the story of an affirmations group where we passed around our journals for other girls to write in compliments, and later read some of them aloud. I'd written something to on girl about her being the first person I'd really talked to when I got there. She read it, and looked over at somebody else.)

Point being.. there are a lot of girls dying because of misdiagnosis like that. (Yea, I know you're not a girl.. but there's a lot more misdiagnosis when it comes to ASDs with girls, and between that and the fact that I am a girl, my examples of it being lethal misdiagnosis are going to be female-based.) People can die from misdiagnosis, even if it's not completely direct.

"There is no spoon." Works for me.

A Professional saying, "I think you have something I do not understand," is about equal to saying to yourself, "I think I have something I do not understand."

I thank you for the correction. And, one of the things I like about many of your posts is your personal ability to add information and perspective in ways that are not difficult to digest.

Keep it coming, Maggiedoll!

Hehe. I remember that. I am too old for a childhood diagnosis of AS, so treatment I got for social-skills deficits and being 'emotionally disturbed' was with a bunch of kids who were mostly abuse victims. I was uncool.

I think leejosepho just means that for a lot of us who are adults, official diagnosis won't do us any good (except as self-validation, which we may not need) but recognition of our autistic traits is quite helpful.

Only to geeks and aspies.. You must like ridiculously huge amounts of vaguely-related information and seriously obsessive and over-thought ideas in order to tolerate me. Everybody else wants to strangle me.

But thanks for the ego-boost.

Come now, don't be purposefully dense. Your "children" barb was hardly well concealed.

Do you mean this:

I'd suppose that 'raining cats and dogs' thing is a problem for those unfamiliar with the expression. Children.

Not a barb. I mean that the guy being interviewed is talking about autistic children. I wasn't referencing other posters at all.

(Adults in a culture where that expression 'raining cats and dogs' is used are going to be familiar with it and not look for the mammals falling from the sky. Kids who, being autistic, supposedly don't readily grasp metaphors, might look. For adults maybe a different example, a novel metaphor, would be revealing. I say, "That movie put my glass eye to sleep," and if you're NT you laugh and if you're autistic you say, "I didn't know you have a glass eye." This would be stupid as a diagnostic method, but more reasonable than 'raining cats and dogs.' )

Ah, I misunderstood, and I apologize. I don't get sound on this computer (well, I do, but it's screwy), so I didn't follow the link to the podcast. Thanks for explaining.

(I must say I've never heard the glass eye expression, and I'd start watching you carefully to see which eye was fake.)

No problem. An aside, there's a text transcript of the interview. I read it. I think it's easier to read than listen to talk.

I think I'm the only person who says that glass eye thing. If I say that something did/will put my/your glass eye to sleep (meaning it's a really boring something) almost everybody takes a bit to figure it out, or asks for an explanation. Most of these people are not autistic, I'm sure. I really doubt that autistic people all have this stereotypical problem with metaphors, or that NT people are all super-wizard at figuring them out. I thought their obtuseness/requirement of double-think was their charm.

Last edited by Electric_Kite on 26 Oct 2009, 9:10 pm, edited 1 time in total.

I'm not going to cast a vote, because I'm not officially diagnosed. But I will give my two cents. By "two cents", I mean I'm going to talk about me for a bit. What can I say? (I can hear the groans beginning.)

Six or seven years ago, my son was diagnosed with AS. Until that point, I thought that autism meant "nonverbal, rocking all day long, and completely in their own world." My son was nothing like that. But many of the things he did, and things that he struggled with, didn't fit with any of the regular parenting books and whatnot. So, when he was diagnosed, I took it upon myself to learn everything I could about AS.

I spent the next few years reading everything I could get my hands on about the autistic spectrum, so that I could be a better mother, and so that I could explain his needs to teachers. I joined online groups of mothers with AS kids, and learned about their kids. When I read stuff written by autistic adults, like "Songs of the Gorilla Nation", and a few others, there were many times when I thought, "Wow, I have experienced life in that way--only maybe not so severe." Some of it was dumb luck, though. Because of my naivete and gullibility, I put myself in dangerous situations often, and didn't realize it until years later. I don't talk funny or have any overtly unusual mannerisms, so was never beaten up. Well, once. I've managed to narrowly avoid homelessness. I'm intelligent, and if I'm not too nervous, I can be articulate enough that people don't mind that I'm not looking at them when I talk.



Also, as I learned more about the spectrum, especially from actual autistic people, I realized that a few, if not all of my grandparents were probably AS. All I have is memories and anecdotes, because they are all deceased.

It didn't take long for me to start thinking of myself as being "pretty close to being on the spectrum". If extreme NT is infrared and extreme autism is ultraviolet, and mild Asperger's is, say, yellow...then I'm probably hovering around orangish-yellow. Am I "yellow" enough for a diagnosis? Probably on some days, and not on others.


When I look at the diagnostic criteria, I don't know how well I fit it. That requires an understanding of a baseline "normal", which I don't think I have. I find that it's useful to do certain things that I've learned from AS people, like making lists to get things done, and writing scripts for certain social situations when I feel worried that I might put my foot in my mouth. When AS people talk about some of the confusing things about social situations, I sometimes am able to offer advice, because I do understand the situation...but many times I'm baffled as well.


Would I go into an aspie group and say, "I'm sure I'm an aspie, even though I'm not formally diagnosed. Can I join?" ? No, I would not. I would say, "I'm not sure where I fit. In some ways I feel like I'm on the spectrum, and in some ways, not so much. Can I join?"


I have never been denied a formal diagnosis. I haven't really felt a strong need to pursue one. It could be interesting, but life is complicated enough, just getting the laundry done and making sure my kids' homework is in their backpacks. I'm pretty sure that I'm on the NT/aspie border enough that some professionals might say "no", and some might say "yes". No matter how expert they are (and that's not an absolute thing), the diagnosis or non-diagnosis will be, in part, a result of whatever impression I make, and whatever the expert understands about AS.

It doesn't matter, though. For my own private purposes, when trying to make sense of things in my own life, to say, "I'm a little bit on the autistic spectrum" is enough. It explains why I have always felt like I experience the world in a different way that most other people. Certain situations are clearer now that I can look back and see that maybe I came on too strong, or missed a social cue, or whatever. Maybe the problem is just that I'm a flake and sometimes lack tact, or walk to work with a sock clinging to the inside of my pants because I'm a doofus who doesn't pay attention---and not on the spectrum at all. That may well be the case. It hardly matters, though.

What about the case where not officially diagnosed can be unofficially diagnosed? That's not the same as self-diagnosed. Someone got hold of a DSM and a group of educators apparently had unofficially diagnosed me. What do I call that? It's not official because there's no documentation that I know about, and it was done by people trained to informally recognize hidden disabilities.

There is no spoon.

Did you at least get to answer an occasional question and participate a little?!