Making sense of the rise in autism diagnoses

Hello, Pandora.  What do you have in that box?

Yes, I am going to talk about … autism.  The last time I did so I was inundated with people trying to convince me of the dangers of immunizations and their causal link to autism.  I really, really, really don’t want to go anywhere near that one.

No, I am not going to talk about the cause of autism; I am going to talk about my observation of the rise of the diagnosis of autism, and a plausible explanation for part, if not most of this fact.

The thing that spurs me to write this post is a study by the CDC which was quoted in the New York Times:

The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.

The rise in numbers is cited as one of the main evidences for some external source – a new thing in our environment – that is causing this rise.  The article, however, gives another clue:

The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.

Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in numbers.

That last sentence holds the golden ticket.  What would make me think this?  My experience.

I started practice in 1994, taking care of both adult and pediatric patients.  At that time, autism was a sink-in-the stomach diagnosis.  When I suspected autism in a child it felt the same as when I suspected cancer.  The diagnosis of autism was as devastating as any diagnosis I could give, as it told many parents that their child would not ever be “normal,” requiring special education, visits to specialists, and a lifelong burden of care.  It was a very, very big deal to diagnose a child with autism, so I didn’t breathe the word unless I was certain of the diagnosis.

Fast forward to 2012, and an incredible change has occurred: the emergence of “autism spectrum disorders,” the most well-known of which is Asperger’s syndrome.  This syndrome was first described in 1944, but it wasn’t until 1994 that it was formalized as a clinical syndrome (i.e. the big-wigs believed it was real and docs could bill for it).  The emergence of these disorders made the diagnosis of autism much less scary, as many of these kids were quite functional.  We would have just called them “odd kids” when I was young.

So why the sudden importance of a diagnosis that is basically “sort-of autism?”  I remember when parents first came in asking me if their kids had Asperger’s syndrome, and it took me a while to figure out why they wanted this diagnosis.  The reason?  To receive specialized services from the state.  Teachers and parents both could get better schooling for these children who would have not thrived in the standard system, so both were motivated to want the diagnosis.  What was once the equivalent of a diagnosis of cancer became a ticket to a better eduction and brighter future for the child.

Please note that I am not saying that this shift is wrong or that it is a bad thing.  Early intervention does, in my opinion, help these kids immensely.  I do believe it is good to taylor the education of kids to their needs, and a medical diagnosis is an easy way to accomplish this.  But also note the 180-degree shift in the relationship of both parents and doctors to the diagnosis; it used to be a horrible thing, and now it is a very good thing to diagnose.  I am diagnosing much more autism; but I believe this is not because I am seeing more of it, I simply have more motivation for the diagnosis and more latitude as to what that diagnosis entails.

Is this the whole reason for the increase in autism?  I have no idea.  I don’t even know if my assessment that I am not seeing more autism is accurate.  What I do know, however, is that a significant portion – the vast majority – of the increase in my practice is due to this change in attitude toward the diagnosis and the addition of the “spectrum.”

Again, I am NOT claiming anything about the validity of others’ claims that environmental factors have a role in this.  I am simply saying what I have observed and how I interpret that.  I think any argument … uh … discussion on autism has to take this into consideration.

Thanks, Pandora.

Rob Lamberts is an internal medicine-pediatrics physician who blogs at More Musings (of a Distractible Kind).

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