Is a Self-Diagnosis Legitimate?

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Hi. I know this is a hot topic in another thread, but I kind of just wanted to a statistical feel for it. I'm asking that only clinically diagnosed aspies answer simply because it's really their opinion I'm looking for. And just for kicks, let's just assume that the person in question is completely mentally stable.

(I am listed under "not sure if I have it or not" because I don't feel comfortable saying "I have Asperger's" when I've never had someone other than my brother tell me that I do.)

THANKS!

Edit:

Okay a couple of really good points have been made.

By legitimate I mean being able to go to, let's say, an Asperger's support group without being officially diagnosed. If you were at a support group, and someone meandered in and said, "I'm positive I have AS but I've never had an diagnosis, do you mind if I join your meeting today?" what would you say to him/her?

And I do mean for self-growth, but also to be able to confide in those you trust without feeling like one is offending an entire group of people with whom you may or may not belong for sure.

Last edited by heliocopters on 21 Oct 2009, 4:46 pm, edited 3 times in total.

I would say yes if there is enough evidence or data to support a self diagnosis.

I'd say it's legitimate for some purposes but not for others.

A self-diagnosis should let you:
--call yourself "autistic"
--participate fully in the autism community
--research the impact of autism on your life, in order to grow as a person
--request therapy for the purpose of solving specific problems, which would be problems with or without a diagnosis

A self-diagnosis should not let you:
--request accommodations
--request financial assistance
--request treatment for autism, specifically
--participate in autism research studies
--claim to be officially diagnosed

In other words: If it's for personal growth, self-knowledge, and autistic culture, then self-diagnosis is fine. But if you're asking for something that costs money or makes special allowances, you need to be evaluated by an expert who knows about autism and has the unbiased viewpoint of someone who is not currently using your brain.

Saying, "no" might seem cruel, but I worry that self-diagnoses are frequently wrong. I suspected I had Asperger's for some time before I was tested, but I didn't go around telling people I had it. I waited until I had a professional diagnosis before I told anyone (aside from my mother and my psycologist) that I thought I might be an aspie. Absolutely I know myself better than anyone else knows me, which is why I noticed I had some of the signs when no one else did. But I didn't think I could call myself an aspie without confirmation from someone trained to test for it. (However, if other people feel comfortable doing that, I'm not going to tell them they're wrong.)

I voted No, but honestly I'm on the fence with this one. I guess it's the word 'legitimate' that's throwing me, because it seems kind of relative without a qualifier. I mean, I think in a lot - perhaps even most - cases, When you begin to read about AS and begin to understand just what it is, if it applies to you, you don't just think "hmmm..that sounds kinda like me" - if the shoe fits - it really, really fits and you KNOW you're reading about yourself.

One may, as I did, and you seem to be doing, hesitate to pronounce oneself as anything absolutely; I'd have felt foolish or resentful to have then gone to a professional for evaluation only to be told I was nowhere near the Autistic Spectrum. But I do think HFAs are probably as likely as anyone with a mental health condition to be able to self-diagnose, especially as adults who've already lived with the disorder for many years before they discover their oddness has it's own name.


That having been said, self-diagnosis will not qualify you for public assistance, should you need it (and just because you're working and self-sufficient at 25 doesn't mean things will be so smooth at 50), so in that sense, no, Big Brother is not going to recognize self DX as 'legitimate'.

I picked option A, but there really should be a "maybe" option. I think self-diagnosis is acceptable when being used to understand yourself, and to get an idea why things are the way they are. I think self-diagnoses is unacceptable for requesting accommodations from others. In other words, self-diagnosis is a personal thing...those who self-diagnose shouldn't go around telling everyone they're autistic, IMO.

Do you mean that one shouldn't say that they need help with x because they're autistic, or that they shouldn't say autistics should be treated? I'm just curious.

I voted no. I don't think it's a bad way to start out, but you need an objective professional view to know for sure. People who tell you that you know yourself better than anyone else also forget that you are very subjective in your views of yourself.

No. And I'm offended at the idea people would have to arrogance to assume such a thing, regardless of "knowing ones self" or "research". And from everything I've read they have a negative affect on the community.

It is so dependent upon context. I finally voted, "yes" on the basis of the OP's edit. If I was in a group and a self-diagnosed person came in and identified himself or herself as such, I would welcome that person.

I voted no because, to paraphrase Richard Feynman, you can most easily fool yourself. There are several conditions that in adults can be mistaken for ASDs, and proper diagnosis can be as helpful as a misdiagnoses can be dangerous.

However, I would not deny or reject a self-diagnosed Aspie here or anywhere else. Some people have lots of insight into themselves, experience in the world of mental health, and strong research abilities, so their own conclusions, while not clinically definitive, should be respected in a situation like a support group.

Further, a psychiatrist friend has told me dozens of stories of people arriving in his office with their own diagnosis, and he then has to explain to them where they went wrong, and convince them to consider an accurate diagnosis. Often, he says, talking a person out of a diagnosis that they have given themselves is the hardest part of his job.

Your poll and your edit are addressing two different things, IMO. Joining a group on the suspicion that you might be AS is very different from self-diagnosis and going from doctor to doctor to doctor trying to get a confirmation or just not bothering to get an evaluation.

It brings to mind a friend that was convinced her stomach pains were just from the stress of studying for her law board. She died of intestinal cancer about two months after passing the board.

I voted no as well. It's perfectly fine to tell people you believe you may be Autistic, but without a professional's diagnosis, to flat out say you do have it just isn't right.

I voted no, I mean I have no problem saying one thinks they have Autism, or Asperger's or whatever spectrum disorder but to flat out say they have it when it isn't on paper from a profesional bothers me because they could be wrong.. though I have no problem them going to support meetings, and doing things within the community but in my opinion it should say "I believe i have this" not "I have this" when they haven't been diagnosed.

I don't think those who self-diagnose should get help like financial assistance, accomodations and those types of things without an official one.. cause that just wouldn't be fair to those who ACTUALLY have an ASD. Its for thsoe who are diagnosed not the selfdiagnosed.

But thats just my opinion.

No, I mean you shouldn't go to a psychiatrist and say, "I have autism and I need treatment," if you've never been diagnosed. You should ask for testing to determine an official diagnosis first, just in case it's not autism after all, or is something else in addition to autism.

I am sorry for the loss of your friend.

I believe that any support group has a legitimate right to decide who may join as part of their rules. However, those who self diagnose are not "illegitimate" to my thinking.

As I see it, diagnosis by a professional can be beneficial to many but not necessarily all. The younger a person is, the more likely they are to benefit. As an older person (in my 50's) I was not likely to be DX'd by the school system as is now often the case. This is true for many here at WP.

I would also point out that the professionals are not infallible. If a borderline candidate for a DX went before a group of professionals, they would not always vote the same as each other.

I am just skeptical by nature. Someone who self diagnoses could be wrong, and so could a professional. Rather than calling myself an aspie, I just say I have some of the traits.

I wonder what would happen to AA if an official dx was required before going to meetings? most of the people who go to those meetings aren't alcoholics, they're just screwed up and they self-medicate.

in order to deny everyone the right to self-identify with the autistic spectrum if they meet the criteria, then professional dx should be made freely available to all regardless of age and ability to pay.

I think it bears keeping in mind that professionals misdiagnose all the time. I spent thousands of dollars on professional assessments over my lifetime and what I found is you have to get to the right professional. most of them will give you a dx of the closest approximation in their repertoire, but not necessarily the correct dx.

I'm fine with self-dx but put some thought into it, and be up front about being self-dx'd.