THCB

Behind the New Autism Numbers

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 NY 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.

Rob Lamberts, MD, is a primary care physician practicing somewhere in the southeastern United States. He blogs regularly at More Musings (of a Distractible Kind). Where this post first appeared. For some strange reason, he is often stopped by strangers on the street who mistake him for former Atlanta Braves star John Smoltz and ask “Hey, are you John Smoltz?” He is not John Smoltz. He is not a former major league baseball player. He is a primary care physician.

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Larry PChris (@GottaBNimble)Loreli Smith-HoardHeidiwearetruthbc Recent comment authors
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Larry P
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Larry P

There are way too many mothers pushing for autism diagnosis in kids who aren’t actually autistic. Here’s a good example: http://www.documents.dgs.ca.gov/oah/dds_decisions/2010010326.084.pdf

Chris (@GottaBNimble)
Guest

This is a time of many paradigm shifts and I’m uplifted with the creative thinking, new technology and disruptive innovation going on, so I was eager to read this because I was surprised with the recent statistics: 1 in 88 have autism, broken down to 1 in 54 boys at a cost of 137 billion/year. The enormity of the challenge requires disruptive and critical thinking and I was eager to be enlightened. Poor me. People seem to be caught up with what really encompasses “Autism,” “Asperger’s Syndrome,” and so forth. To argue over the semantics and pragmatics of the label… Read more »

Loreli Smith-Hoard
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A doctor, and you can’t spell tailor?
Loreli Smith-Hoard
smthhrd@yahoo.com

Heidi
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Heidi

Autism is way overdiagnosed. Almost every child diagnosed with autism today seems to be high functioning or asperger case. This is quite telling. These kids do not appear to be truly autistic. An excellent educational video portraying classic autism is seen on You Tube, titled, “Classic Day with Classic Autism.”

wearetruthbc
Guest
wearetruthbc

A new Movement has started and is spreading like wildfire…please check it out and share
If you have a child/grandchild, brother, sister, or friend with autism and if they weren’t born with it – please join Autism Mothers for their worldwide photographic event on World Autism Awareness Day. Go NOW to the NOT BORN WITH IT event page and post a picture of the child/adult with autism, together with their first name and a short comment.1 in 88 and so many NOT BORN WITH IT. Enough is Enough

The event page is here:

https://www.facebook.com/events/333401013384098/

DeterminedMD
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DeterminedMD

First of all, hats off to ya, dude! I like the hat, it adds color both figuratively and literally.

The autism issue is almost solely driven by getting second generation antipsychotics being prescribed. If you believe anything less, than all I can say is good luck if someone close to you is falsely diagnosed as autistic and then given Risperdal, Zyprexa, or Seroquel. These kids will thank you for your lack of responsible investment in their well being in 10 or so years!

bev M.D.
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bev M.D.

Rob;
I think i read in the Washington Post’s version of this story that roughly 40+% of autism cases were ‘severe’, roughly 40+ % were pervasive developmental disorder, and 9% were Asperger’s, and that the increases in diagnoses were proportional to the current incidences fo each type. If true (and who knows, from a newspaper), this would indicate that increasing diagnosis of milder cases might not be the primary explanation. I think.

Maggie Mahar
Guest

Rob– Thanks for writing about this. A great many parents are now worrying that their children have autism because pediatricisn are trying to diagnose it prematurely. Today, my daughter told me that her husband printed out something from CNN and is worried that their 7 month old might be autistic. (As her pediatrician points out, she is extrmely outgoing and affectionate. No signs of anything wrong. Most importantly, you Cannot Diagnose autism at 7 months.) As you say autism exists on a spectrum of diseases, some very minor. I wrote about this on HealthBeat back in 2007 when the American… Read more »

Becky Miller
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Becky Miller

Drinking diet soda during pregnancy causes autism! Read more here: http://www.whilesciencesleeps.com/birth-defects-caused-by-aspartame/
Increases in the rate of autism track perfectly to increases in diet soda consumption, and the epidemic began when the FDA approved aspartame for use in diet sodas. Pregnant women should avoid diet drinks or they risk their unborn babies’ health!
Dr. Woodrow Monte’s laboratory studies on rats showed that when the mothers were fed aspartame, the pups exhibited behavior similar to autism. Autopsies showed the same sort of damage in the brain that is found in autism. See the research for yourself – all fully documented, scientifically sound.

DrWonderful
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DrWonderful

Oh great, the hat is back!