A poll about Asperger's Syndrome

[Orrex]

For those of us here who claim to suffer from Asperger's Syndrome, how do you know that you have it?


I do not intend to disparage anyone nor to make fun of a serious condition--I'm merely asking for info.



Please feel free to complete the poll anonymously, but you're welcome to post a reply as well, of course.

on edit: sorry--I should have included an "Other" response, but I forgot

[Brotherjohn]

1. You cannot "know" you have it until you've been diagnosed by a qualified..

...medical professional (and even then, it could be iffy; this area is one relatively new to medicine, and changes all the time).

Most of the options in the poll amount to being diagnosed by ones' self or one's friends. I'm sorry, but that it utter nonsense. "Formal, established diagnostic criteria" mean little when not used by trained professionals, preferably with years of experience.

(I realize the you, Orrex, might not be saying that this is a legitimate way to diagnose, and that you are only taking a poll. Can I ask how you discovered you have AS?)

You might suspect it, and you might even be right. But to say you 'know" is a far cry from making an educated guess.

To say you "have it" and you "know" you have it does a disservice to those who actually do. This kind of mis-diagnosis leads to charges that autism / AS are over-diagnosed (and they may be, but this only exacerbates it), and to labelling of AS kids as "spoiled" and "undisciplined". It detracts from the importance of the condition as a medical problem for those who have it, and contributes to a general corruption of the public's knowledge about autism/AS.

My son has Asperger's, although his doctor's vacillate between that and high-functioning autism (if you know anything about them, there is little to no difference). He has been diagnosed by a pediatric neuropsychologist and a psychiatrist who specializes in autistic spectrum disorders. It has taken years of testing and other medical intervention.

Everyone in my family can find many traits that lead us to believe that they somehow are related to my son's AS. We are very well-read on the subject, and we see the similarities all the time. Our traits may well be genetically connected to my son's AS. But we don't think WE have AS. There is much more to it than being a little quirky and obsessive, as some people seem to think.

If you THINK you may have an autism spectrum disorder, see a professional, and be patient. And realize that most general practitioners are woefully uninformed when it comes to autism.

If you aren't happy with your doctor's treatment, do your research and press them on it, or seek another doctor. And even if you're a text-book case, it still may take years to get any kind of firm diagnosis.

But please, don't rely on "diagnosing" yourself, or being "diagnosed" by friends.

ON EDIT:
Sorry for getting on my high horse a bit. But I've had the following happen too many times: A mother says her child has AS/autism, we ask "Oh, so does ours! Who's your Dr.?" and the answer is something like "Our dentist told us" or "My cousin's husnband is a doctor and he told us" or "I saw this show...".

After hearing enough sideways comments about our son "needing a good whoopin'", I just think this kind of claim perpetuates that, and many more, misconceptions about AS.

[Orrex]

2. "being diagnosed by ones' self or one's friends... is utter nonsense"

Thank you, Brotherjohn! You have frankly nailed the point I was trying to make (if only to myself).

First, let me answer your question:
I realize the you, Orrex, might not be saying that this is a legitimate way to diagnose, and that you are only taking a poll. Can I ask how you discovered you have AS?

Clearly I should have disclaimed outright that I do not have AS. I apologize for the confusion resulting from that omission.

I have personally known (by my rough count) between 20 and 30 adolescents and adults who have claimed to suffer from Asperger's or "mild Asperger's," all of whom have waved it around as a sort of "Get Out of Social Interaction Free" card. As far as I'm aware, not a single one of them was ever diagnosed by a qualified expert, yet all were confident of their self-assessments, likely because they'd read the Wikipedia entry and were able to shoehorn themselves into the diagnostic criteria listed there. To its great credit, Wikipedia explicitly cautions against self-diagnosis, yet some people just won't listen.

Your points are excellent, all of them! This is a complex neurological condition that demands investigation and understanding, and it's poorly-served by posers (for lack of a better word) whose diagnoses amount to little more than "that sounds like me."

In other threads I have mentioned my distaste for "historical" or retro-diagnosis of deceased people, yet there's a trend to say that Einstein or Edison suffered from Asperger's. Given the subtle and elusive nature of this syndrome, it is hopelessly irresponsible to try to diagnose anyone from beyond the grave.






Incidentally, I detected no "high horse" tone in your post, so although I appreciate your apology, it's wholly unnecessary IMO. But thanks all the same!

[Brotherjohn]

3. Oh, I misunderstood when you said "those of us" in the post.

I'm glad you get my points. The diagnosing beyond the grave doesn't bother me so much, as long as it's limited to Einstein "may have had", etc. I don't think it adds to people trying to diagnose themselves that weren't already inclined to do so anyway, and it possibly helps to raise the confidence and self-image of those who have been diagnosed. It IS likely that some of these people at least had similar conditions, and we ARE only guessing.

But I think the real-world harm in living people diagnosing themselves and their kids is just as you pointed out: they behave as though they have a "get out of jail free" card. Not only does this hurt them, and others around them (often physically), but it makes more and more people view AS as nothing but an excuse for brattiness.

Here we have these bratty kids are out there harming people just because they have poor excuses for parents.

Meanwhile, we aren't sure if my son will ever be able to get an education (despite having an IQ of around 150). He can name every major bone in the human body (he's 5) but he has a hard time interacting in a socially acceptable way with people. Despite all of our intervention, he has a hard time controlling his (sometimes violent) impulses. And he has little to no concept of danger. And all of this is strictly physiologially-based. His brain is wired differently, and he can't help it.

[Orrex]

4. "His brain is wired differently, and he can't help it."

That's another important point to make. It's my impression that the pop-psych definition of Asperger's (and ADD, while we're at it) frames the condition simply as a behavioral anomaly, rather than a fundamental neurological difference.

If a person lacks a thumb, we don't say "she's acting thumbless on purpose." Equally, if a person lacks the "wiring" for acceptable social interaction, it would be grossly incorrect to say "he's acting that way on purpose."

I'm aware that the signs of autism can become apparent in different degrees and at different times. Would you mind if I asked at what age your son was diagnosed with Asperger's?

[Brotherjohn]

5. Three. Early intervention means everything.

We were "lucky". He went to the hospital at six weeks for something that may or may not have been related. Scary as it was, it put us on the neurology track. Also, his pediatrician is very well informed on such things. Also, because of mild CP, he has had therapy from the time he was months old. So he has had professionals in three areas, all knowledgable about autism, treating him from the time he was an infant, and with their ears pricked up about such a condition being possible.

A diagnosis at 3 is unusual, but it's because we started up that creek when he was weeks old. And everything since the diagnosis has only further verified that he is a textbook case.

[Brotherjohn]

6. Related to your "thumbs" point, Dr. Phil did a segment on a boy with AS.

It was a bit sensationalist, but less so than his usual. The show clearly made the point, in limited time, that AS is based in the brain. They even brought on a doctor who specializes in brain scans that reveal visible differences in autistic people. Of course, it was a bit too cut & dry, and there seemed to be a "hard sell", implying that visiting this doctor could result in an easy diagnosis (it was Dr. Phil after all). But overall, it did a small bit to raise awareness of what AS actually is.

But the infuriating thing was, even though this boy was 16 and had been diagnosed years ago, his parents STILL did not get it. They either blamed themselves or the boy for his behavior. He would even TELL them he couldn't help it sometimes. The child was doing a great job adapting (considering), but his parents had zero ability to cope with his condition, and their responses to him only exacerbated his behavior.

[Odin2005]

7. This is a relic of blank-slaitist thinking with a dash of Freudianism.

Until the last couple decades most psycologists blamed things like ADHD and Autism totally on enviromental factors.

[Brotherjohn]

8. I think I miss your point. What is a relic of that? Mis/over-daignosing...

... every badly behaving child as autistic, or the contention we're making that the latest evidence reveals more and more that, when actually present, autism-spectrum disorders are physiologically based?

[Nikia]

9. I asked my counselor if she thought I had Asperger's

I score as borderline Asperger's on those self assessments. She said "No, you are actually pretty much the opposite. I work with a few clients that have it and you do not have it at all." She thought all my "Asperger syptoms" were caused from being highly empathetic and experiencing trauma as an empathetic person causing me to retreat into my shell in response.