Wednesday, October 7, 2009

1 in 100?

Recently I posted the following video clip on Facebook.

Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.

So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.

1 comment:

kate hopper said...

Pia, I think you are absolutely right. Poo-pooing the rates will do nothing. Thank you for this important post.


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