Au(sperger)tism

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Has anyone else read today's piece in the Times opinion section? As it focusses on one mom's views I'm curious to know what other moms are thinking. I'm not sure how to make a link.

http://www.nytimes.com/2010/02/10/opinion/10grinker.html?ref=opinion

Actually that article was written by the girl's Dad.

I concur wholeheartedly with this statement. I'm actually getting a bit annoyed with Success stories like Temple Grandin's spreading the impression that Asperger is just an 'inconvenience', rather than a real handicap. That's the sort of perception that will make support services for people with AS harder to get, because we'll be told we don't really have a serious problem after all, and that's just dangerous.

I emphatically agree with Simon Baron Cohen on this - there is not enough science yet on the actual physical causes of Autism to go erasing all distinctions. It may yet be discovered that Kanner's and Asperger differ somewhat even on the genetic level, so defining everything solely by the concept of 'spectrum' may not turn out to be entirely valid.

Yes this is scary I am in the process of applying for SSI as I have tried so many times to hold a job and they all ended with me being quit /fired. I attempted to live alone with my kids for 6 mo this did not end well the concept of keeping a home and caring for the kids was a s far as I could go, I cooked once a day so I didnt burn things. I also neclected myself to the point that I collapsed from low blood sugar, to meet me on the street you would never imagine this but looks can be deceiving with AS people. The abstract part like bills and work just didnt happen I was so in my own world and pleased with my being able to have my own home and keep things my way reality just didnt occur to me. Non aspergers people may not understand this but AS people need a support person to succeed in any work an interpreter of sorts the only job I was able to hold was because my manager basically babysat me.

Well, there's some stuff I can do on my own. And sometimes I just need help the first time around. You can't make generalizations, either about what we can do or what we can't.

The other things were not generalizations they were personal the generalization was with work. It is common for aspies even in their fields of interest to need extra guidance and advocacy to succeed in maintaining long term employment.

I am getting worried about this sort of "oh, no big deal" attitude about Asperger's because my likely-AS daughter has and will likely continue to have social difficulties, and I am not likely to be around forever to constantly be her advocate. We're all still young and have our health now, but what about the long-term. I don't want to dump it all on her NT sister.

I know I am probably getting way ahead of myself in some of these concerns.

[quote="Willard"]Actually that article was written by the girl's Dad.

My bad. Thanks for correcting my Willard. Thanks for the link Nephesh

I agree with you Abu-Noor. My son is an only child. Even though he is still very young,(4.5) I have no idea how things are going to develop for him. He does not seem to have a cognitive impairment, but he definitely has trouble paying attention when I am trying to teach him new things, and he seems to have zero desire to make friends. I was older when I had him, so I shudder to think what will happen to him if he can't make it in the world with no siblings and no friends when I am gone.

When we first had him diagnosed as PDD-NOS/possible Asperger's, the doctor's office told me that if I applied for disability that he would more than likely not qualify. He was 2.5 years old at the time, so to me that made sense since he was still developing. However, when he starts to get older, I am not so sure.

I guess all we can do is take one day at a time, and not get too worried about the future---It really doesn't help anything!

I'm not a mom, but thanks for pointing this article out. I found it to be very narrow and probably not representative of most people's views, especially with statements like: "The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid..." I'm sorry, the change is welcome for whom? And which careful studies does this sentence refer to?

To quote Tom Petty: "You don't know how it feels to be me."

The really troubling thing is that this author gets a national soapbox because of the initials after his name, and most readers will automatically assume the author is an expert because of this and that his opinions represent the opinions of most parents.

The question that needs to be asked and answered is, will re-structuring the DSM to exclude AS as a diagnosable disorder cause more harm then good? This is an important question because it is supposed guide all medical doctors via the Hippocratic Oath. Hey! I think I'll make my first poll.

My concern is aspergers being down played as very mild autism spectrum instead of being a diagnosis with its own spectrum like it deserves.

There is a very clear distinction between Asperger's Syndrome and Autism.

I'm not sure why some people are unhappy about this. The new diagnosis is merging AS and autism, so it's recognising that people with Asperger's can have difficulties as severe as those with autism, or those with autism can be as capable of development as people with autism. It's probably going to make instances where people where AS are not given the accomodations they need much rarer, since it won't be seen as just a mild version of autism.

And what is that distinction? I have never been aware of it. Asperger's Syndrome and autism are both identified on purely behavioural grounds; the underlying causes of it aren't important. Until we know the causes of the conditions only the external behaviour can be treated, and therefore they may as well be the same diagnosis. In any case there's no reason to assume that the two conditions are caused by different things; there's no evidence for that.