Proposed autism definition changes

I didn't argue it was.

But, people are getting upset about something they should have seen coming.

Maybe if the debate had been more honest in the first place, this wouldn't be a surprise.

 

It is a fair question, but I think the answer is pretty simple. We have much more information than we had 20, 30, 40 years ago. We have a better understanding of the entire spectrum, there's more help for kids (and adults) who never received any assistance in the past and there's an awareness among the public at large that wasn't there before. That has helped families, teachers, schools and peers, and I'd argue our society is better having that knowledge than it was decades ago.

The assumption by some that there are so many people "gaming the system" really bothers me. No doubt there are parents who "want that diagnosis," but I'd argue that there are just as many, if not more, who are in denial about their kids' situation

 

I think what a lot of these younger borderline kids actually have is garden-variety anxiety.

Anxiety disorders-- the disease nobody's talking about. It can be genetic or brought on by the environment.

A psychologist told me she thinks 25% of the kids in our town have some level of an anxiety disorder-- be it social anxiety disorder, panic disorder, generalized anxiety disorder, OCD or PTSD. I think a lot of these kids with inherited anxiety disorders are being diagnosed at age 3 and 4 with autism.

The problem is, you can have autism and anxiety. But you can also have anxiety without autism. And the way you would treat a non-autistic child for anxiety is NOT with therapies that you treat kids with autism.

So young kids with anxiety are not getting the early treatment they need, and they are turning into anxious, depressed teenagers. Who then get medicated.

Statistically, anxiety, not autism, is the #1 mental heath issue among kids today. And nobody talks about it.

 

I would also add, though, that because of the help my son has received so far, he continues to receive educational services. If he is cut out of the system because autism has been redefined (reports say that up to 75% of people diagnosed with Asperger's could no longer be considered on the spectrum), that could be difficult for him. He has been helped so much. I wouldn't call that gaming the system. I don't want to wake up one day and learn that my kid is no longer on the spectrum due to a technicality, but I suppose it could happen.

It certainly helps to read more on this, though. Another criticism I've come across (and hinted it earlier), is the idea that many people -- Asperger's is a great example -- need to understand their particular place on the spectrum to help themselves. If they can define their condition and seek out information, support groups, peers, etc., doesn't that make their world better?

 

I understand an increase based on what we know now - but 1 in 100 or whatever? That's a very steep climb and hard to believe.

 

Well, because we know more, the definition has materially changed. Even 20 years ago, I wouldn't have been considered on the autism spectrum because I'm high functioning enough (especially at the time I was diagnosed versus when I was little). Twenty, 30, 40 years ago, one had to be fairly unable to function in society to be considered autistic.

The DSM III (released in 1980) was the first DSM to have autism as a separate category, and it had six qualifications that all had to be met in order for a diagnosis. The diagnosis really changed with the release of the DSM IV (1994) which really broadened not only the category, including AS and PDD-NOS, but also had a list of 16 symptoms of which people needed to display six to be considered autistic. If you apply that criteria to 40 or 100 years ago, my guess is the diagnostic rate would be similar then. Here's the full set, if you're interested: https://www.firstsigns.org/screening/DSM4.htm

The criticism now is that definition is overly broad because it does encompass some of the kids who are just "odd" rather than fully impaired. And the difficult thing is that kids who are odd can often be helped by the same types of social skills training and one-on-one adult interaction you get in therapy. And as is mentioned above, there is likely a lot of crossover with other diagnoses, including anxiety disorders, SPDs and whatnot.

Finally, there used to be a large stigma attached to being diagnosed as autistic which is not there any more. So I would say parents are much more likely to accept a diagnosis of autistic, which means the reported numbers will be higher even among the clearly and significantly impaired group.

So when you hear about how it's become epidemic, it's because the goalposts have changes. We don't know whether or not the numbers of people affected have grown because we don't have a similar data set from previous decades to compare it to.

 

See, as an adult with Asperger's (I hate hate hate people calling it Aspie or average people "neurotypicals."), knowing why I act the way I do certainly helped me understand a lot of things. Why I am freaking compelled to pair up colored foods and eat them in color pairs even if the flavor is the same. Why having something change my schedule at the last minute sends me into a blind rage. Why noises and textures seem to bother me a lot more than others. Why I find sarcasm and humor such forgein concepts from some people.

But I also think that many of the truly HF people (like me who can live on their own and hold down a job) can tend to use it as a crutch. Yes, people smacking gum brings my anxiety up to 14 and makes me want to kill everyone, but that is my problem, not theirs. I don't understand why my talking to myself weirds other people out, but I know it does so I have to not do it (or do it silently) rather than expect them to respect that it's my coping strategy. Some adult support groups can be pretty bad about enabling what end up being socially self-destructive behaviors. They talk about "embracing who you are" but that's so counter to what should be the ultimate goal - having a fulfilling, happy life as a part of a wider society. Those support groups are almost like high school cliques where you are somehow special for being in it and all the "average" people can screw off if it bothers them. They make me crazy.

I can't expect help in adult society, nor should I, because I can absolutely function even if I go about it a little differently and with a little more difficulty. And if I lost the official DSM supported diagnosis, then that wouldn't change. Nor would my sense of identity - I would consider myself someone with some autistic traits who didn't meet a full critera, and I don't think there's anything wrong with that.

Finally, and this is where I really differ with some, I think that going through school with only a few support tools (some outside of school social skills classes, making sure the restricted interests are indulged to a reasonable extent, some academic support if necessary) is the greatest training for being able to be a happy and functioning adult. Yes, school will be very rough at times. I came home crying regularly. But it was also the best lessons about what others will accept as "normal even if a little weird" as opposed to "socially unacceptable." Kids are cruel because kids won't make excuses for others, and honestly, that's much more helpful in terms of changing behavior than really nice adults who want to cajole you. There's consequences to being weird as a kid, and those consequences are the greatest motivation for change even if you don't really understand why the rules are the way they are.

Boy, have I thought about that way too much over the past few years.

 

As the parent of a child with PDD-NOS, I found this recent article in the NY Times very interesting.The general thought behind the article is that Asperger is over-diagnosed as people who have social or interpersonal disabilities are being lumped together with people who have language-acquisition disabilities. It goes on to talk about some famous people who were thought to have Asperger without receiving a diagnosis.

http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?nl=todaysheadlines&emc=tha212

 

That story was part of a package with a companion op-ed from a person who was diagnosed with and treated for Asperger's, only to find when he reached adulthood that he wasn't Asperger's at all. The kicker: The initial diagnosis came from his mother, a psychologist and Asperger's researcher who thought he was such a perfect example that she put him in a video about it.

http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html?ref=opinion