Proposed autism definition changes

I have a 13-year-old son with Asperger's and he receives services. But as far as the school is concerned, he's on the Autism spectrum. They list him as having ASD. I'm not sure why these changes would cut down the number of diagnoses. I would think it might actually increase it.

Listening to a pretty good NPR piece this week on Asperger's and ASD, it seems the worst thing about the APA lumping them all together is helping individuals understand what they have and what they're dealing with, especially if there are different characteristics and different coping mechanisms for different parts of the spectrum. There's a big difference between telling a people they are autistic and telling them they have Asperger's, where they can find information specific to them.

 

Honest question: Which might present the bigger problem for autism treatment, overdiagnosis or underdiagnosis?

 

Unfortunately, I think people are being diagnosed as having Aspergers or autism who don't have it. The same holds true with ADHD.

There are a lot of parents who need "an excuse" for why their kid misbehaves. Some would rather say, "He's mildly autistic." than anything that suggests that there may be a parenting issue involved or that the kid is just anti-social.

My cousin has high-functioning Aspergers and he doesn't go to the doctor anymore than anyone else does. He's on some medication that his sister says helps him, and if that's the case, I truly feel sorry for anyone who has to be around him when he's not medicated. Hell, I feel sorry for anyone who has to be around him in his current state.

 

Wow, that's a great question.

 

Yeah. At the risk of running emotions too high here -- and I am not including you in this Baron, I know the care and research you have put into the whole topic -- but I do think there are parents who believe their child is "a little off" somehow and go looking for any diagnosis they can find, and they will eventually find a doctor who will run through all the tests and then find a leaning or some kind of "on the spectrum" diagnosis. Whether that is a significant percentage of the kids who end up receiving services from the schools, I don't know, but that portion does exist.

 

We have a kid in the neighborhood, who is as normal as any other kid and the mother tells anyone who gets within 100 yards of her "HE'S MILDLY AUTISTIC!!!"

There is nothing wrong with the kid. He gets shy when his mother is around because she's an insufferable dunce and she smothers all of her kids.

There was another kid who my oldest played little league with. We were at a pizza party and my oldest kid wanted me to show him and the other kid how to play Angry Birds on my phone. I sat there with both of them for about 45 minutes and this kid was sharp, friendly, funny and as normal as any other 5-year-old.

I know he had been diagnosed with autism, and this kid has great, great parents, but I didn't see anything that would suggest that he is any different than anyone else.

 

Mizzou, I can't speak for other parents or kids or people who suffered without a diagnosis until they were 40 years old. But I can say that our world changed when our son was diagnosed with Asperger's at the age of 4. It explained his social behavior, his outbursts, his anxiety, his need to stay on schedule and many other things.

We didn't go looking for a diagnosis, and he wasn't misbehaving. We weren't looking for excuses for him. We were trying to help him. We had great preschool teachers who saw some things in him and helped us with some of our own anxieties about what he might or might not have been going through. He went through a hellish (for him or anyone with Asperger's, I imagine) barrage of observations over the course of a morning and the consensus was Asperger's. For me, the last thing I wanted to hear 9 years ago was that my son was autistic. It broke my heart.

Still, a lot of people we know (and if you met him, you might feel the same), don't realize that he's all that different than a so-called normal kid. They just think he's shy and small and quiet, a little silly at times but maybe a bit of a loner too. But I guarantee he has some struggles that many other people don't have, or at least small things to you or me can be major life problems for him.

Is ADS being diagnosed too much? Maybe? But it changed our life, our son's life and helped our family tremendously. We've had excellent teachers and school aides and a cooperative school that works to make sure his IEP is followed and written to his needs. I don't think, 20+ years ago, a kid like that would get the help and support he needed. Some of those kids do fine; some don't.

 

Thank you. I pleaded with the psychologist who diagnosed our son not to hang the autism label on him. ("He's verbal, he's loving, it can't be autism.")

Every time there's an autism thread, you can count on people showing up to say it's just parents angling for benefits and privileges, or to cover their own shortcomings. They should all be giving thanks they're not coping with a child's impairment while being blamed for it.

 

That's the emotion I was trying to keep out of it. Sorry if I didn't succeed.

Do you believe that there has been a fifteenfold increase in autism-related disorders because of environmental factors, or do you believe that 14 of every 15 cases used to be missed? I suppose the latter is possible. But there are parents who want to put a label on everything just to know what their kid "is."

 

I think there are kids who would have been considered odd when I was young who are now placed on the high-functioning end of the spectrum. At the other extreme, profoundly autistic kids used to be institutionalized, so we weren't as aware of them as we are now.

I don't believe that accounts for all the increase, but I can't point to data. One of the problems with the data is the malleability of the definition.

 

I don't doubt any of this, and I hope my post did not come across as insensitive, because this is an issue that is very close to me and I could not be more sympathetic to any parent who has a kid with Aspergers or autism.

I could tell you stories about my cousin for days... I think he was 4 or 5 when he was diagnosed and that was probably only because my late aunt was a Psych professor and my uncle is a child psychologist.

He was a champion swimmer, probably just one tier below people who compete for the Olympics and swam at Stanford. He's brilliant, quite possibly the smartest person I know. I just can't even adequately describe the kinds of things this guy would say. I know I told the story on a different thread about what he said to my aunt at my grandmother's funeral.

My grandmother was by far the most beloved person on my father's side of the family and she had a heart attack during what was supposed to be a routine surgery and died. Everybody was devastated.

He said something to the effect of, "I'm not sorry she's dead. She was old." as my aunt sat there and sobbed.

At my aunt's funeral more than a few people remarked that she would finally have peace now that she didn't have to worry about her son anymore.

 

Yes. That's what I take from it too.

The diagnosis of "pervasive developmental disorder, not otherwise specified" is a big stumbling block. To a layperson, that sounds like a medical way of saying "a little odd."