Please tell me you don’t seriously think autism is a fad!


Happy Autism Awareness (and Understanding and Acceptance) Day! 🙂

I read another “no offense to people who have kids with autism, but I think autism is a fad and is overdiagnosed” comment yesterday. And it ticked me off.

Definition of FAD

: An intense and widely shared enthusiasm for something, esp. one that is short-lived; a craze.

 Definition of AUTISM

: a variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns

 
 
 
You know, maybe there is something to that comparison. Because autism definitely involves “An intense enthusiasm for something” …though, not always so “short-lived” and definitely not usually “widely shared”- like Sam’s current obsession with the iPad, or flushing the toilet, or swinging on doors, or shredding stuff…
 
But when people say that they think autism is a fad, and the new ADD, etc. they aren’t talking about Sam flushing toilets – they are saying that we are jumping on some sort of bandwagon. That it’s the “in” thing to do.
 
And you know as I typed that I had a bit of a lightbulb over the head moment (maybe even a blue lightbulb perhaps) and that “ding ding ding” sound — so here’s my clever thought: ADD was believed to be the “fad” back when we were kids – and now we are all adults and having kids and “they” say autism is the fad now. Sooo… since we are thinkin it might be genetic, maybe the autism is the next generation of ADD. Like those with ADD have kids with Autism. My hubs has ADD. And my daughter does, too. Evidence shows that Autism may be several genes working together to create autism – some of those being the genes that cause ADD.
 
Soooo… in a way, they nay-sayers are right.  Autism is the new ADD.
 
But they say that the rise in Autism rates (now 1 in 88) is due to over diagnosis and increased diagnosis of those who are just “socially weird”  and years ago wouldn’t have been diagnosed. And I think that may be some of the reason. But no way can it be the only reason for the drastic rise.
 
This piece of an interview with the director of the National Institute of Mental Health, Dr. Thomas Insel, and Dr. Peter Bearman, the professor of Sociology at the College of Arts and Sciences at Columbia University, helps explain what the research indicates as far as why the rates are on the rise.
 
Dr. Insel: From what you know now when you add all of those together how much of the increase can you explain?

Dr. Bearman: Well that’s a complicated question, but I think we can pretty uniquely associate about a quarter of the increase from the birth cohorts from 1992 to 2001 which is a lot, to diagnostic change on the border between diagnosis and mental retardation in autism. I think we can associate about 16 percent of the increase on the other border between autism and other neurodevelopmental disorders on the spectrum: Asperger’s, PPDNOS etc. And those are largely non over-lapping components of increase, so that’s about 40 percent. I think the spacial clustering itself adds another few percent. I would say I am confident that 40 percent of the increase I think I know what caused that. That leaves a lot of increase left, 50 percent is a lot to look for still.

Dr. Insel: Any ideas about what’s driving that other 50 percent?

Dr. Bearman: Well, some is genetic. I think that the increased parental age accounts were 11 percent of the increase over this period and that’s a lot and the mechanism by which increased parental ages expressing itself I think likely largely genetic. I think the tricky part is going to recognize that it would be harder now to find that 50 percent. It would look like it should be some toxicological environment that’s shared because of the spacial clustering. Because there’s a very strong process of amplification of the understanding of autism that leads to increased diagnosis as parents learn how to recognize symptoms a very, very, small event that would transform the environment five years ago, ten years ago, even you could imagine, 40 years or 50 years ago, when the moms of children with autism now were in utero as eggs- a very small event could cascade into a larger epidemic now.

Dr. Insel: So what do you tell parents who ask about this if you have friends who have autistic children and they say “What’s going on here? Why this epidemic?” What do you say in response?

Dr. Bearman: Well, I think parents are struggling. It’s just enormously difficult to have a child with autism. It makes it very hard. I think parents are naturally searching for explanations, and I think that the message now is the search for a quick and dirty explanation might not be advancing science.

“the quick and dirty” part makes me think of Juno. I love that movie :p

Image

Mark : Technically, that would be kicking it Old Testament.
Juno : Exactly! Right? Do you know what I mean? Like in the good old days. When it was quick and dirty.

 It definitely bugs me when people think autism isn’t real, that we are just labeling kids who don’t need labels, or that I am doing it because it’s the cool thing to do. Sam’s cool and everything, and I love him just the way he is, but last night we were up with him until after midnight because he wouldn’t sleep and instead climbed, ran, and crashed into stuff every chance he got.  And every time he walks by the stove he touches the burner to see if it’s hot. Even after he burned his finger a few days ago and cried for hours and has a blister now. He still touches it. And he dumps the shampoo and dish soap if we forget to hide it, he emptied our spice cabinet onto the floor in 2 minutes flat, if I have a nice tall refreshing drink and take my eye off of it for a second he grabs it and flushes it, and my house perpetually looks like a bomb just went off in it. NONE of these things make me feel like I am in a cool club. Or that I am part of some current fad. It is actually quite the opposite. It is isolating. And overwhelming. And definitely not the sort of bandwagon I would voluntarily jump onto. Don’t get me wrong, now that I am on the wagon I love it and I think I am blessed to have a special son — but it’s hard. Very hard. And saying it is a fad is total crap. There, I think I said that very eloquently. :p

April 2012
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