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Janelle

My blood's boiling too. Keep us updated on what you hear from your representatives.

minstrel hussain boy

go ken! go ken! go ken! go ken!

i know one true aspergers' person. over the years he has become a pretty good friend. he has a wonderfully sweet and rich baritone voice and is a staple in jingles and background vocals. he performs almsot exclusively in the studio where the environment for performance can be closely controlled.

one of the many amusing things about my friend jonathon is that he always pronounces the sydrome to sound like "ass burgers." it has provided many a fun moment at hamburger hamlet after a session.

waitstaff: and what can i get you?

jon: i'll have the ass burgers, with fries and an ice tea.

jon and i: (laugh laugh laugh giggle smirk)

p.s. your analogy to blind people and traffic signals is spot on. it's not that they don't know the signs are there, it's just that it is hard to recognise and process them.

Sarah TX

Quick point - the AJP is predicting that 91% of people diagnosed with Aspergers syndrome or PDD-NOS will keep their diagnosis (or, presumably, a similar one) under DSMV-5. This will probably be a nightmare for that 9% though.

Since 'old media' seems allergic to hyperlinks in online articles, here's the issue of AJP which discusses DSMV-5 and ASD. There's a good editorial which cites the 45% retention study and mentions a new diagnostic category 'social communication disorder'.

Personally I don't really understand why they'd want to change the diagnostic criteria if it's supposedly going to capture roughly the same number of diagnoses, but I'm not a psychologist.

Lance Mannion

Sarah TX, thanks for catching that. I misread that part badly. I'll correct it when I get home. Also, thanks for the link to the study.

"Social communication disorder"? That sounds like a way to pathologize being a jerk.

Doug K

the cynic in me says the change is pushed by insurance companies who don't want to keep paying for autism services.. cf.

The putative reasoning is different: the new understanding of autism is as a spectrum and not a discrete set of diagnostic points; the DSM-5 is supposed to codify this. The 10% to 50% of people, depending on which study you believe, who then drop out of the diagnosis, are a mere side effect.

Doug K

also see at Laura's place, a good discussion.

Mark P

Thanks for this. I have no children and no connection to anyone with Asperger's, but it's a window into the human mind that I find useful in trying to understand not only others, but also myself. And a reminder that it's a person, not a condition, that we're talking about.

Nanzee

I work in a primary school. Kids at my school and their families are usually just beginning to encounter the collisions with "neuronormal" expectations. You're right; one size does not fit all. Kids come in all varieties, and kids who appear to have behaviors that might fit on the spectrum are all different. As the school counselor, I try to be a friend and make my office a safe space. I'm lucky and the kids at my school are, too, that we have competent and concerned administration. Not all schools do and then staff end up focusing on the test scores and nothing else.
good luck to your son

Wendy

Lance, as an FYI, the IEP does not exist at the college level. Students with documented special needs can have accommodations such as a distraction-free environment and extended time, but it's not an IEP.

My 10 year old has Asperger Syndrome. I always say, if you know one person with Asperger's, you know one person with Asperger's. So different, yet so similar. I think it's because Asperger's is the lens through which the personality becomes ... not distorted, but transformed, maybe?

Lance Mannion

Wendy,

" I think it's because Asperger's is the lens through which the personality becomes ... not distorted, but transformed, maybe?"

Very good way of putting it.

My son's college asked to see his last IEP from high school in order to gauge what services and accommodations to provide for him. So, yes, you're right, technically he doesn't have an IEP, but his IEP is very much a part of things still, and on it it says he has Asperger's, which as of the other day, no longer exists, according to the APA.

Barbara

I am an only an occasional lurker here but I am delurking to say, this is an incredibly perceptive and intelligent description of Asperger's and (for lack of better words) the higher-functioning part of the autism spectrum. I say this as a mother of a teen with HFA and the wife of a man with many characteristices of Asperger's. I wish there was a way to have it republished where it could be more widely read!

I was excited to see the New York article but very frustrated when I finished it. You gave words to some of my uncomfortable feelings with it, particularly when you took apart the "lack of empathy" canard -- that's long been a pet peeve of mine.

There is definitely a new, faddish aspect to the use of the words "autistic" and "Asperger's. Not too long ago, an art review in The Times referred to a conceptual art exhibit as "overall...nearly autistic." Huh? was all I could say to that.

I cringe when I hear and read, "That's SO autistic" (I can't help but hear shades of, "That's SO retarded.") I did not know what to make of it when Anne Lamott, in a NYT Book Review interview, said that if she met her favorite dead authors, she would "sit before them, rocking autistically." And of course, these are just a few examples, almost every day seems to bring another.

What does it mean and reflect about our culture that "autism" and "Asperger's" are now some sort of slang, for exactly what I'm not sure. "Too wierd for words"?

And is this new, higher profile helping or further marginalizing people on the spectrum? Not expecting answers, these are just things I wonder about and thought the New York article might have addressed.

Jay

I've never been diagnosed with Asperger's, but most people who know me say I have it. Last I heard there was no treatment, so I've never seen the point in getting a diagnosis. I'm 40 years old; the syndrome was not commonly diagnosed when I was in school. I saw quite a bit of myself in your description of your son.

Like a lot of Aspies, I went through school with flying colors. Bullies were a problem in elementary school and dating was minimal in high school and college, but grades were never a problem for me.

After college has been more difficult. The book _Asperger's on the Job_ estimates the unemployment rate for adult Aspies at 85%. I don't know if that's true, but I've experienced prolonged periods of unemployment, one of which continues today.

What I'm trying to say is that generally, for Aspies, school and college are the easy years. Our distinct lack of charm is much more detrimental in later life.

Good luck.

Lorettadillon

It was only after my brother died that we (siblings, not my parents) realized that he exhibited many traits of Asberger's syndrome. The problem with our recognizing it earlier was that he was also born profoundly deaf. My mother had Rubella when she was expecting him. We always attributed his social awkwardness with his handicap; yet there were many socially skilled and well-adjusted deaf people in the deaf and hearing community that were not isolated, detached, obsessive or as misfitting as my brother. He seemed to get worse as an adult: more detached, less willing to assimilate.

His Asberger's, not his deafness, was probably the reason he died young. He refused to seek treatment or tell anyone about his cancer. He knew he was gravely ill and never let us know. Perhaps now we are better educated and will recognize the signs and be more aware, more vigilant toward people with this condition.

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