Is a Self-Diagnosis Legitimate?

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There are two groups of people that can be called "autistic"--first, those diagnosed; second, those who are culturally autistic. The first group and the second group overlap, but there are people who are diagnosed autistic but not culturally autistic; and people who are culturally autistic (broader autism phenotype, NVLD, lost diagnosis, and eccentric) who are not diagnosed autistic.

Consider the Deaf community... they also have a culture; and it's possible to be deaf but not Deaf (someone who can't hear, but doesn't participate in Deaf culture), or Deaf but not deaf (friends, family, sign language aficionados, people with hearing impairments that most people wouldn't say were "deaf", etc.).

Autism-as-culture is slightly but significantly different from autism-as-diagnosis...

Definately. Prior to getting an official diagnosis I decided I has AS no matter what the psychologist said. I had AS traits, I knew that. If that's the end of the story then my self diagnosis was fine.

However, autism is understood usually as a biogenetic disorder. I accept that is probably true, but consider that for years that autism was understood under a Freudian framework. They believed it yet were wrong, hence no matter how much belief I have in the biogenetic I might also be wrong. Hence, sticking with autistic traits is in many ways a safer move and only doing this means self diagnosis is possible.

If you are going to commit to the biogenetic hypothesis, some autistic traits specifically provide support for that. However, those traits are particularly difficult to spot and so for these you need a proper diagnosis.

Questions of legitimacy therefore involve questions about how important theory is to AS. That said, if you stick with traits then sufficient self diagnosis does not just need looking for traits but understanding how they interrelate and interact, specifically which evidence to focus upon and which to disregard. And personally I could only do that because I've spent so many years looking at highly abstract philosophy of science.

Interesting post! By "lost diagnosis" do you mean someone who grew out of being AS?

I also voted "No" for all reasons previously posted.

This question is a lot more complicated than it seems because of how new the diagnosis of AS is, and especially how rarely it is ever considered in a female at all.
For one thing, there's no such thing as an expert in autism spectrum disorders in adult women, so it's not like anybody who thinks they might have it can go get screened and find out if they do or not, because there are so incredibly few professionals qualified to make that diagnosis, and since there aren't any drugs specifically approved for the treatment of autism spectrum disorders, there's no push to create qualified professionals. All the financial incentive is to diagnose people with anything else, something that some pharmaceutical company can make money off of.

So there's a rather large population of women who have been in and out of various treatment, never getting anything adequate or even appropriate, because nobody was ever able to figure out what was wrong. People who have been consistently blamed for the fact that professionals don't know what the problem is. That's not a group that suddenly reads the criteria and decides "oh, maybe I have this.." it's people who have very significant problems, but years of bouncing around in the mental health system could never figure out why.

My psychiatrist freely admits she knows nothing about autism-- and doesn't know of any professionals who do. When I mentioned I might look for an autism specialist, she told me to let her know if I find somebody, because she'd add them to her list of referrals. So despite the fact that one in 91 people in this country have an autism spectrum disorder, it was less than fifteen years ago that most of the spectrum was even acknowledged, and there are next to no professionals qualified to diagnose it in an adult. That's a lot of people going through a lot of problems, and never knowing why. Getting an AS diagnosis isn't as easy as going to your family doctor and getting a blood test or something, it's expensive even if you are lucky enough to find somebody who can diagnose it. And if you're an adult, you probably can't get any help for it even with a diagnosis. That doesn't make it any less significant when you read about it, and talk to other people, and finally all those problems you've had your entire life suddenly make sense, and there are other people who have all those same problems, when you thought you were alone, when you thought you were crazy, or that you were just plain bad.

If it's logical and reasonable, and the person is open to logical and reasonable arguments to support or refute the self-diagnosis, sure.

Otherwise, not at all.

Right, that stuff.. that's what all my rambling was trying to get to.

Technically yes--grown out of the AS impairment, but naturally not out of the neurology.

Wow, seriously, wow. Autism as a culture? What like a fad?? This is nothing like deaf culture, they are either all deaf/ hearing impaired / or closely involved with someone who is. They don't just read about being deaf on the internet and say "oh yeh that sounds like me I want to be a part of that". That is what happens with AS.

I don't get this autistic culturally thing, actually makes me feel a bit off. I mean no wonder they're thinking of taking AS out of the DSM, it's become a lifestyle instead of a medical issue.

Um, they're not planning on "taking it out" they're planning on building on the concept of the autism spectrum and actually making it a diagnostic spectrum. For that matter, they're acknowledging the presence of sub-clinical autistic thinking as part of the autism spectrum. They're not removing it, they're expanding it.

That's not what I've heard. I've heard 4 possibilites.

- Asperger's gone all together from the DSM

- AS will become HFA and have far less generalized criteria

- AS and HFA not longer recognized as ASDs

- AS not recognized as an ASD

I mark myself as "undiagnosed" although it's been confirmed by a university research psychologist--all but the "this will go down on your permanent record" part. I would have to pay for that "privilege" from a "licensed" psych.

After years of searching for some rational explanation of my attitudes and behaviors and struggles for the last 40+ years, I discovered AS by myself, quite by accident. Then had it confirmed.

I've hitherto refused (and pledge to continue to refuse henceforth) to play into this "official diagnosis" versus "self diagnosis" pissing contest that some Aspergians seem hell-bent on perpetuating, as though having AS is some sort of gift from the gods, and that all others are inferior beings.

Attwood certainly pegged these individuals correctly when he described them as having a "God mode" that is pervasive and incontrovertible.

I think Callista had the best answer on this topic, which I'll summarize as a simple digest: If you seek to be on the public dole, then no, a self-diagnosis is not "legitimate".

I think having AS sucks, and I'm firmly against SD. I think the SDs are the ones with the god complex as they are pining to be in this "aspie club."

Self-diagnosis is never legit anyways because unless you are trained in properly identifying neurological deficiencies it is just a guess, educated or not, tis just a guess.

hahahaha! I'm not pining to be in any effing club. I just want a good explanation of what's been wrong with me my whole life. an autistic spectrum disorder is the only thing that explains it. I had to take it to the professionals to get it looked at as a possible dx, so yeah it was an educated guess and still is even though 3 mental health professionals and my family practitioner agree with me. as far as I'm concerned, the medical professionals have also made an educated guess, and by your criteria most of the "autistic" people out there with a professional dx aren't legit either because they weren't dx'd by someone "trained in properly identifying neurological deficiencies". those professionals aren't common and they aren't cheap and most people don't get to go to them.

my god.

If there was a pill or treatment that could be routinely prescribed for a fee $$$$$$$$ then ASDs would be diagnosed a lot more. As it is there is no money in diagnosing it.

Look at psychotherapy and SSRI's for life. These are ongoing cash flow positive for years. How much money do they make from the years of useless psychotherapy and endless treatment for depression? Asperger's in a "functioning" adult has a lousy profit margin.

Consider the ethics of professionals and therefore professional diagnosis or professional non-diagnosis. I don't think self-diagnosed need to explain themselves. It is the professionals that have the explaining to do.

I propose the alternative question "Is professional non-diagnosis legitimate?"

It depends on what you’re legit for.

I think someone’s self-diagnosis can be spot-on, if they know themselves then they can probably tell if they’re likely to be an Aspie or not. Do the criteria fit? How do you relate to topics on web sites like WP?
I don’t think an SD is necessarily any less accurate than an official one. How many adults here (ca age 25 and up) started out SD’ed? I would guess a lot.

As some have pointed out already, a lot of the experts make mistakes. They don’t have sufficient knowledge about autism and Aspergers.

SD’ed people should feel free to join sites and participate there.

Having said that, I must admit that if I was gonna go to a real life support group – with all the nerves involved in that – I would have wanted to know that everyone there was ‘like me’, that they have the same thing. It would be such a vulnerable thing to go to a place to talk about issues where everyone could see. It's so much easier online. And if I knew that someone there might not belong, it would be even harder for me personally to open up and then I’d lose my reason to go there.
So sorry, no, I would not be okay with someone SD’ed in a real life support group.

Last edited by Skilpadde on 21 Oct 2009, 11:05 pm, edited 1 time in total.