Wednesday, December 17, 2008

Self-Diagnosis

Recently, I was reading Michael John Carley's book Asperger's from the Inside Out. At one point in that book, he starts talking about self-diagnosis. I don't have the book with me right now, so I'll just summarize what he says:
Firstly, he estimates 99.9% of self-diagnosed aspies really are on the spectrum (the .1% who aren't, he claims, are typically claiming to be AS because the condition they really have carries greater stigma). He says at first he felt it was just fine to be self-diagnosed, and gives an example of a self-diagnosed aspie he knows who is doing quite well. But then he noticed in his support groups that despite his 99.9% comment, repeated frequently, self-diagnosed aspies seemed much more likely to think that he doubted they were autistic. And this made him think that most aspies probably need a psychologist's confirmation in order to feel secure in their aspie identity.
This made me think. I've actually had two separate experiences of self-diagnosis on the autism spectrum. With the first one, the self-identification as autistic, my experiences are a lot like he says - I called myself 'probably autistic' until I was officially diagnosed. And deep down inside, I kept wondering if maybe I was actually stupid and rude, as I'd believed before self-identifying as autistic. It was my diagnosis of PDD NOS that stopped that.
For my second self-diagnosis, of pathological demand avoidance, an official diagnosis is just not possible. The only center that diagnoses PDA is in England and only sees children under 16 years old. When I emailed the author of the original description of PDA, she wouldn't even give me her opinion about whether I had PDA, based on my description of myself. So no official diagnosis. But now I don't really doubt that I'm PDA. And what happened to do that, is that my mother read the description of PDA and told me it sounded just like me. So, in essence, my mother diagnosed me.
I've heard autistics refer to themselves as 'self-diagnosed and peer-confirmed', meaning that they self-diagnosed, then met other autistics who agreed with their self-diagnosis. My self-diagnosis of PDA is a bit different, because my mother's not autistic, but it's the same general idea - a non-professional confirming a self-diagnosis. It seems to me that maybe what's needed, for many people at least, is just someone else agreeing with their self-diagnosis. That other person needs to be seen as knowing enough to make that judgment, and as someone who'd be willing to say straight out if they didn't think you really fell into that category, but they need not have a degree.
I also wonder if this uncertainty about self-diagnosis is itself an effect of how much the category of autism is 'owned' by professionals. Virtually all gay people are basically self-diagnosed, and it's rare to see such uncertainty among gays (granted, homosexuality is also much more easily defined, so that could be it instead).
Any thoughts?

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9 Comments:

Blogger Lindsay said...

I've heard autistics refer to themselves as 'self-diagnosed and peer-confirmed', meaning that they self-diagnosed, then met other autistics who agreed with their self-diagnosis.

One thing that can make you want to compare notes with other autistics is if you've got something else going on, like a history of abuse. One of my friends is like that; he couldn't really tell, before talking to me (particularly about sensory stuff and very early memories) if he had Asperger's or if he was just unable to relate to people because the abuse had messed him up.

4:15 PM  
Blogger Lindsay said...

The analogy between gays and autistic spectrumites had never occurred to me before. I do think that the difference in the degree to which the two groups tend to seek out independent confirmation of their identity mostly has to do with the fact that autism is such a complicated category. It's not *just* social awkwardness, or introversion, or being a visual thinker --- indeed, some autistics are none of these things. It's a question of having *enough* parts of a constellation of traits that everyone has to some degree, and it can be hard to figure out by yourself if you do. Being gay, on the other hand, is quite self-evident.

I do also think there's something to your idea about "how much the category of autism is 'owned' by professionals." Gayness hasn't been pathologized or seen as something requiring treatment for several decades now, while autism is still considered a medical condition. I think, once neurodiversity becomes more widely accepted, and "the autism community" (of actual autistics) grows bigger and more visible, we might see more people content with self-diagnosis and peer confirmation.

4:24 PM  
Blogger Athene said...

Speaking as someone who is self-diagnosed "atypical asperger's" (not an official category, but the best fit), but as someone who has been psychologically and sometimes physically abused since childhood, and who suffers from occasional paranoid episodes and chronic depression, I think a large part of it is that when you finally do get up the courage to share your self-diagnosis with someone, or multiple someones, the vast majority of the time you are going to hear something like "But you can't be autistic because _BLANK_!" or "Gee, I don't think that sounds like you at all!" (often followed by "You always seem fine talking to me, so you can't really have social problems!") which is very discouraging. This is especially so if the person really pushes you to drop the self-diagnosis, which some people will.
Then again, most people with autism have probably experienced a lot more bullying and self-doubt than your average person (who probably experiences their fair share of that, too, but not as much) and it can lead to a tendency to need to seek someone else's agreement.
For me, I have had so many arguments and had to struggle to defend my stance so much that at this point I can't even think the word "autism" without getting a horrible lurch in my stomach! There are very few people I can actually say anything about it to, because everyone else I know gets mad at me.

5:12 PM  
Blogger Vogon Poet said...

Very interesting.
It's probably because there's so much talk about "fake-aspies".
Apparently they're everywhere, and everyone who's a dork, needs AS as an excuse to act like a jerk.
I've read that so often now, I'm not surprised, the self-diagnosed, or those suspecting to be on the spectrum, have doubts.
There's a common opinion, that we all just read the Wikipedia article about AS, and go "Heureka! That's me!"
The funny thing is, when I first read about AS (yes Wikipedia) I thought, no way, I can't believe there are people, who can't read facial expressions! I was so convinced, this didn't apply to me at all.
It took me months of research and thinking about it, until it dawned on me, that yes I can see if people *smile*, but not how they smile (politely, sarcastically, etc) still unsure, I met with a local Aspie group, I just wanted to see one of "those" in person, dunno what I expected, freaks and outright nutters, severely disoriented, disabled, dysfunctional people.
No surprise, considering how negative Autistics are presented in the media.
When I saw the others, it made an instant click in my head.
They were so much like me (and my dad), it was mind-boggling.
I used to think, I just inherited my dad's personality, and there'd be noone like us.
After that, I went to an Autism expert, to get diagnosed, but only because of services I need.
By now, I've met so many Aspies, irl, I realize, I'm much lower functioning than any of them... weird.

7:26 PM  
Blogger Lindsay said...

"But you can't be autistic because _BLANK_!" or ... "You always seem fine talking to me, so you can't really have social problems!"

Holy crap, yes. I've gotten so much of the latter, and also a lot of people's generalized astonishment that a bona fide autistic is out walking around, as opposed to, I don't know, languishing in an institution or only going in public with a retinue of assorted medical personnel.

I used to think, I'd inherited my dad's personality, and there'd be noone like us.

An (older) Aspie friend of my boyfriend's is like this, too --- he says his parents never thought he might be autistic, they just figured he was "weird", and left it at that. He was only diagnosed within the past couple years. (Shortly after my boyfriend and I got together: "Dude, guess what? I'm dating this autistic woman, and SHE'S JUST LIKE YOU OMG")

9:39 PM  
Blogger wrongshoes said...

I am/was a self-diagnosed Aspie, and often wonder if I'm just stupid/rude.

I might try to get a formal diagnosis, but don't trust psychologists to get it right either!

I can't decide whether it serves any purpose to have the label anyway.

Since researching Asperger's, I tend to diagnose a lot of people around me as well. My husband and his father and uncle, both my parents. It all makes sense to me why the are the way they are now. If I were to mention it to any of them, though, they would laugh. They don't think there's anything "abnormal" about them. Or me.

8:37 AM  
Blogger Kara said...

I just recently started learning about Asperger's and realized how well it described me. While I would currently be considered self-diagnosed, it is more of a theory than a diagnosis (albeit a 99.99999% probable theory!). I feel I need to see an external person to truly be diagnosed.

7:06 PM  
Blogger Andrea Shettle, MSW said...

Sorry, off-topic from this post, But, Ettina, I was wondering if you might be interested in blogging about this:

Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at: http://www.petitiononline.com/jlno2009/petition.html

There is also a Facebook group at http://www.facebook.com/group.php?gid=40538392681

6:30 AM  
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8:30 PM  

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