Friday, November 13, 2015

Holy Crap, We're Curing Intellectual Disability (or How I Learned to Stop Worrying and Love the New 1 in 45 Autism Diagnosis Number)

In March of 2014 the CDC officially lowered the number of children affected by autism to 1 in 68. I wrote an article about that here.

This morning, a year and a half later, the CDC released their findings from a new survey study with the alarming finding that the number was now 1 in 45. Close to another 30% increase. In just 3 years!!!

Here is the new study. Go ahead. Read through it. Pretty dry stuff, right?

There are some interesting things in there. A lot of focus on the "questionnaire/survey" methodology. A lot of explanation of how reversing the order of two questions made all the difference to get a more "realistic" number.

But one thing is for certain, regardless of how we get there, the prevalence of autism in children ages 3-17 in this country is indeed closer to 1 in 45.


This is a graph from the actual report that I know you all read through. I took a screen capture to save you the time. You're welcome.

Do you notice anything funny about it? Funny strange, not funny Ha-Ha.

***

Autism is without a doubt a "spectrum" disorder. No single autism presentation is the exact same as another.

Everybody knows that.

But what IS autism?

There are ZERO genetic markers for autism. There are several commonalities. Over 100 listed. To this day the most common genetic commonality of autism remains Fragile X syndrome. If you combined all known seizure disorders and epilepsy, that would be number one, but as it stands today... Fragile X Syndrome.

So, we should ask a geneticist. Their answer would be, we can only find commonalities.

No, autism is a separate neurology. So we should ask a neurologist. Their answer would be, we can only treat some of the commonalities of autism. We deal with seizures. We deal with neurological disorders. We can map those. EEG and brain imaging technology has come a long way. But that's more effect than cause when talking about autism. Autism doesn't look like anything on an EEG.

No, autism is a psychological disorder. We should ask a psychiatrist.  "Poor social skills" is essential to a diagnosis, and that's all theory of mind stuff, right? Their answer would be... we don't have anything to treat autism specifically. There are some great medications to treat some of the presentations or comorbidities (yes, that is really the word we use) like ADHD, OCD, or general anxiety, but we're not really sure what autism is with any uniformity. In fact, we keep changing the diagnostic manual we use to recognize it! With every update to the DSM, we include a little more.

No, autism is an entirely different state of mind... a transcendence if you will. So we ask a philosopher. And they would say autism is Greek for "self-ness", much like the philosophy of solipsism... a belief that you are the only being. You are unable to take the perspective of another, because there are no others. Not like the psychopath who chooses to disregard the perspective of others, nor the sociopath who lives by an entirely different set of rules of right and wrong, but a complete inability to recognize that others are autonomous and sentient beings in the first place.

WHAT!?!?

***

Autism is just as much a mystery today as it was in the 40's when Kanner started diagnosing it, when Asperger started defending it, and Lovaas started treating it.

We have come a long way in recognition. A long way in treatment. A long way in awareness. A long way in acceptance. And a long way services available.

Sadly, we have gone the opposite direction in what might be the most important category - definition.

***

The reason I wrote this article tonight, while citing the newest CDC report that raises the prevalence rate of autism to 1 in 45 is two-fold.

A 30% increase is alarming. Is there an autism explosion is in this country?

No. Remember the graph I copied for you? Do you notice the last set of bars? The set that shows virtually no change (okay, a .01 variant change) in the number of cases that identified themselves (or their children) as "any of the conditions"?

So, at least from one study to the next, there is an explosion in diagnosis only.

I could have used the click-bait title of "Holy Crap, we're curing Intellectual Disability"...

And been, from an analytical point of view, 100% correct.

We are merely transferring diagnoses.

***

This article is not meant to anger or shock anyone. Quite the opposite, in fact. The explosion in diagnosis is a good thing. It brings more services and awareness and therapies and inclusion and compassion and research.

It should put minds at ease that there is no "autism explosion" in America... perhaps a re-grouping explosion, perhaps a definition explosion, perhaps an awareness explosion.

We shouldn't stop looking for environmental factors that contribute to these new numbers. We shouldn't thumb our noses at the Neurodiversity movement. We shouldn't ignore commonalities or comorbidities. In fact, quite the opposite, we should explore all of them even more. We should ask more questions.

What we can't afford to do for our country and our children is simply label our youngsters "autistic", throw our hands up in the air and say "that's that". Better start ABA therapy and cancel the geneticist, psychiatrist, neurologist, and physiatrist because autism is autism and there's a clear path.

We should never stop asking questions.

Nothing is more marginalizing than apathy.

***

If you made it this far, you might be scratching your head. You might be yelling at your screen. You might be yelling at me:

"Who the hell does this guy think he is!? He's no scientist, physician, or even analyst. I'm sticking to my guns on XYZ causing autism and that's that. If only someone like the CDC did a study confirming this 'transferring of diagnosis' I could get on board".

Oh, wait. They just did. You can read it again with this in mind here.

Or, you can read the 2010 study that lowered the number to 1 in 68 here

***

I end this the same way I ended my article from March of 2014.

Never stop asking questions.

Definition ---> Cause ---> Prevention ---> Cure

You can't work backwards in a logic chain.


Thank you.

1 comment:

  1. This was a thoroughly informative post and i enjoyed it thoroughly. This is a superb post and please keep up posted with more such wonderful posts.

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