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.

10 replies »

  1. 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 or category doesn’t resolve the epidemic costs associated with it.

    Although who pays for services and support is a concern, DSM5 changes to category won’t change the epidemic, rather, we are all just waiting for a new label…so let’s do that…rename high-functioning Asperger’s Syndrome to “apples” and PDD-NOS to “oranges” to distinguish them from “classic” autism which I’ll label “bananas” (no pun intended).

    So the argument I’m hearing is that apples and oranges aren’t bananas but others would argue that they are all fruit. So as a doctor who is offering diagnosis, you get all of the fruit. Perhaps as an insurance carrier or therapist you can begin to segregate your fruit into categories and only deal with bananas but that doesn’t mean that apples and oranges don’t exist.

    The brain is the ultimate black box with a sensory interface. What is diagnosed seems to be what is communicated either verbally or through behavior or rather in some cases, disengagement or the inability to communicate in the way mainstream society feels is appropriate.

    I have friends with a nice variety of apples, oranges, and bananas, as well as friends outside of the produce department. I think every parent wishes for a functional and meaningful life for their child. And I think many of them would gladly give up the celebrity that comes with having a high functioning child on the spectrum to provide their son/daughter and themselves with more choices.

    But here’s the rub, our brains and bodies are hardwired for efficiency while mitigating risk, to evolve. We are all on that spectrum somewhere in that store and most of us end up in the cereal isle with all the other pretty little boxes.

    Disruptive innovation occurs from lateral thinking and a collaborative approach to solving, not for the answer that everyone has, but for the answer no one else has.

  2. 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.”

  3. 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:


  4. 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!

  5. 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.

  6. 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 Academy of Pediatricians (AAP) sounded an alarm in a report calling for screening of children under two, listing signs of autism which pediatricians and parents should watch for. .

    At one time, autism was considered a rare disease. When I hear the word, I think of Dustin Hoffman’s brilliant performance in “Rain Man,” where he acts the part of an obsessive-compulsive idiot savant, imprisoned in his own tiny world of repetitive behavior. Rain Man is almost incapable of social interaction; it seems clear that he is afflicted with an uncommon disorder.

    ** But the Academy’s report begins by warning that, today, autism is not rare. One out of 150 children suffers from ASD, we are told. That’s why it is important to begin screening for the disease at an early age.

    According to the AAP, doctors and parents should keep an eye on even the youngest children. For example, the report explains that “turning consistently to respond to one’s own name is an early skill that parents should expect to see in an 8 to 10-month old.” The absence of this skill is said to be an autism warning sign. Other signs of trouble include “lack of warm, joyful expressions” when the parent points to an object and the baby gazes at it. And by 9 months, says the report, the baby should be babbling—otherwise parents should be worried.

    The AAP offers a brochure, entitled “Is Your One-Year-Old Communicating with You?”, developed to help raise parent and physician awareness and to promote recognition of ASD symptoms before 18 months of age. (The AAP advises that pediatricians give the brochure all parents at the child’s 9 or 12-month visit.)

    I quoted Bryna Siegel, professor of child and adolescent psychiatry and director of the Autism Clinic at the University of California, San Francisco. As soon as news of the AAP report calling for stepped-up autism screening broke, experts such as Siegel began to get calls. “Sunday night I got a video from parents of a perfectly normal 14-month old…[the parents were] convinced that the normal hand movements of a completely social, completely communicative [non-verbal/ babbling] child must be autism. They had already bought several books,” Siegel reported when I contacted her last week.

    “It is cruel” she added, to encourage parents to imagine that there is something wrong with their child.”

    Dartmouth’s Dr. Steve Woloshin, who has written extensively about unnecessary testing, over-diagnosis and “disease-mongering” (both of which we’ve talked about here on HealthBeat), agrees: “We have no idea whether these screenings—and early treatments—are doing more good than harm. Today, people are selling sickness. I would like to know a lot more about the statistic that 1 out of 150 kids is autistic. Where did it come from?”

    A little digging produces the answer. Fourteen years ago, only 1 in 10,000 children was diagnosed as autistic—but then estimates began to climb. What happened?

    It turns out that in the 1990s the definition of autism was expanded to include a group of diseases. At one end of the ASD spectrum, children are diagnosed with Asperger’s syndrome. Unlike most autistic children, kids with Asperger’s can be very verbal, and even pedantic, when talking about subjects that interest them, but they lack social skills. At the other, fuzzier end of the spectrum, one finds a disorder called PDD-NOS (Pervasive Developmental Disorder-Not- Otherwise Specified). With this catch-all incorporated into our definition of autism, the Center for Disease Control now estimates that 1 out of 150 children suffer from some form of ASD.

    Today “just about anything can be on the autism spectrum” says Siegel. “The move to increase the rate of diagnosis has taken on a life of its own. In a world where all kids are diagnosed, there are no more shy, anxious kids—they have ASD. In truth, ASD is a significant impairment with specific symptoms,” Siegel emphasizes, “it’s not just a personality variation. But I’m seeing 4-year-olds who are not very impaired who have been diagnosed as autistic.”

    Over eighteen years of working with autistic children, Siegel herself has developed a screening process that, she says, is appropriate for an 18-month old “and may work pretty well at 14 months”—but she wouldn’t use it on a younger child. That’s because in the rush to diagnose early, too many children are misdiagnosed

  7. 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.