Charlie’s Our 1 out of the 100

Charlie cushion arranged Charlie-style with the floorboards
I'm writing this on Thursday (the 17th of December) evening, in advance of the Centers for Disease Control and Prevention's anticipated announcement today of new statistics about the autism rate from the Autism and Developmental Disabilities Monitoring (ADDM) network. The buzz is that the new rate will be 1 in 100; that, in the US, every one in 100 children is on the autism spectrum. 

The CDC last announced statistics about the autism rate in February of 2007. The big news then was that the rate was now 1 in 150 (up from the previous 1 in 166), with one state—our state, New Jersey—having a rate of 1 in 94, the highest in the US.

At the risk of offending anyone (or rather, any someones), we're not inclined to treat whatever figures the CDC announces as further "evidence for an autism epidemic" or anything so alarmist. Back in May of this year, researchers from Cambridge University reported that as many as 1 in 64 children (in the area studied, Cambridgeshire) could be on the autism spectrum. Back in October, Joseph over at Natural Variation-Autism Blog wrote about the autism rate as being something more like 1.2% to 1.5%

The crux of the dispute about there being, or rather not being, some "epidemic of autism" rests on whether you believe that there is some actual, quantifiable increase in individuals on the autism spectrum, or whether you believe that we're finding more cases of autism spectrum disorders because we can find them, can identify them, can count them; due to our better understanding of what autism is and more accurate diagnostic criteria. It seems tremendously difficult for these viewpoints to meet, as the difference between them is (I think) based in what some might call ideology. I can see why some might have a desire to promote autism as an "epidemic," in order to get the public's attention and to get people to focus on what is made to seem a terrible scourge, a veritable plague. And I also think—know—that portraying autism as such does not help understanding of autistic persons in general, and of my son in particular.

Charlie doesn't have some dreadful illness. He does have some dreadfully big challenges, due to his neurology (to his "neurological wiring," more specifically). His needs run deep, are profound, and we know he'll need supports for all of his life, in most every context. But we also know that he is as he is, that he's Charlie, different and diverse. 

Not your "typical" child; a "classified" child. 

Not your average child.

Just Charlie, himself.

I'm of the sort who's inclined to think it a good thing that we can identify autistic persons and count them and to the extent that there seems to be an increase in the autism rate.

Increased awareness (an amorphous term, I know) and understanding (though still imperfect and partial, but it grows by fits and starts) have meant that there are programs, schools, services, though never enough and never quite as one would like, never quite accommodating enough for one's child. The big autism center that Charlie now attends was only built in the last couple of years and it's almost at its full capacity of some 200-225 students.

Though it should be noted that not all of the students are just like Charlie and, for some, "autism" is only one of the diagnoses they have. Is it possible that some of those students were given "autism" as a diagnosis with a view to what this diagnosis brings? Or because "autism" helps to explain something about these children's learning styles, communication, ways of being in the world?

And if "autism" is the word, or one of them, that helped something like the BAC to get built, not a bad thing. Indeed, a quite good thing. I don't think there is a public school out there that Charlie could be a student in at this point. He needs a place where he can be as he is, so that he can keep learning. I don't know if someone was thinking about autistic individuals' sensory needs when they designed the cavernous space of the BAC, but with the snow and cold here now, we know it's a very good thing for Charlie to have so much space to move around in, no matter what the weather. I don't know if every student has that need but he certainly does, and it's been very heartening to see those individual needs of his acknowledged and accommodated for. Certainly we hope that the needs of all the other students at the BAC are also so addressed, and that there are and can be other schools created where students on the spectrum's needs can be met. (And especially I would say, for my friend Emily's TH.)

Thursday was good and quiet and peaceful in these parts. Charlie and some of his classmates made a trip to the supermarket where he shopped for Saltines and tissues using a list (with photos and words) prepared by his teacher. Due to standstill Skyway traffic, I was late to pick him up and hurriedly called the office; it was all treated as no big deal. (I was only some seven minutes later than usual, as it was.) Charlie had a "second lunch snack" and then we sat together at the laptop, me spelling out words for him to enter into the YouTube search box. He didn't want to go for any walks or (unusual!) rides in the white car, but spent the rest of the day hanging in his room or asking for more time on the computer. He munched happily at a bowl of rice and big pieces of golden crust (scraped from the bottom of the pot). He jumped so high on his bed I ran in to make sure he wasn't knocking the ceiling with his head (he wasn't). We had a couple of exchanges about old friends in Minnesota, Portia (little does she know how popular she is in our household), and my parents. We read the social story about our upcoming trip to California.

"Bedtime," said Charlie at 7.45pm. 

I'll admit my beloved boy is probably not the "easiest" of children to parent (what child is?). But if CDC data reveals that the likes of Charlie are more common, it's nothing to protest, or shrink from, or wish it were otherwise.

I'm just always so glad Charlie (out like a light at twenty past 8) is here.

8 Responses to “Charlie’s Our 1 out of the 100”
  1. Niksmom says:

    I’m glad Charlie is here, too. 🙂

  2. Elise says:

    I for one don’t mind the CDC numbers and I also don’t care which side of the argument a person is on, epidemic or diagnostic. The reality is that these children/adults are here. They need support, education and a future. If it takes the “fear” of epidemic to get the government or the people to do something then so be it. Human beings truely are loathe to help others if the cause does not effect them direclty, so let the average person be “afraid”. This way there will be a societal push for answers and understanding.

  3. Jill says:

    I agree that people like Charlie are people, first and foremost, and they need to be treated with caring and decency. I am, however, very concerned by the increase in autism, just as I’m concerned by the increase in obesity in our country.
    Having to provide lifelong care for those autistic individuals who can’t support themselves is a serious concern bot to the families of autistic individuals and to the taxpaying public in general.
    We waste our resources on needless government spending and on waging unnecessary and costly wars. Meanwhile, there aren’t enough group homes and assisted living facilities for our disabled population. The parents of autistic children have to worry about their child’s future after they, the parents, are no longer living. That must be so very stressful when there are no programs in place to share the burden.

  4. Nicole says:

    I don’t believe for a moment it is 1 in 110 (the CDC’s new finding). I’ve known far too many people on the spectrum for the stats to be that low. My best friend from kindergarten through middle school had a brother dx’d with Aspergers. How she avoided being diagnosed I have no clue- it was probably mostly the times (early 90’s). I think the stat is most likely more along the line of 1 in 64, with about half of the individuals misdiagnosed or undiagnosed.
    I would love if along with the new stats they would publish “startling decrease in intellectual disabilities and quirky behavior”. Because that is basically what is happening- people previously considered subclinical, noverbal learning disabled, or diagnosed with “mental retardation” are now being put on the spectrum.

  5. karen d says:

    I just hate that it’s referred to as a “disease.” My son is not diseased. He had neurological differences. And I think the fear that people use to get people to notice/care also can have a negative impact = families think that the autism dx is a “death sentence” for one. Not to mention the things I know first hand — the karate school refusing to teach my son when I disclose his dx because of these fears, without even meeting him!

  6. Jen says:

    Karen, that stinks. There is a karate school here (chain actually- action karate) that teaches kids on the spectrum. I’ve heard great things about them, and they are great about providing sponsorship for autism related causes. I also used to go to a non chain place, and there were several children with autism, younger, 8-9, and older, I believe he was 15, who trained there. Perhaps another place might be the answer.

  7. autismvox says:

    We never got too far with karate—went once to an open house for autistic children at a karate place. Turned out to be just an open house in general with the instructor barking and yelling. And somehow, I can’t seem to get off this place email list!

  8. autismvox says:

    We never got too far with karate—went once to an open house for autistic children at a karate place. Turned out to be just an open house in general with the instructor barking and yelling. And somehow, I can’t seem to get off this place email list!

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