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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  • MuddyWaterz

    Great article. I agree with the skepticism, but do not discount the validity of certain cases. The same line of reasoning could also be applied to other subjective diagnoses including fibromyalgia, chronic fatigue syndrome, irritalable bowel syndrome, etc. Are they legitimate problems, a social crutch, or financial malingerers? Debatable indeed…

  • http://twitter.com/redbirds12 John C. Key MD

    I’ve been in practice 20 years longer than you–and have noted the same.  In the 70′s the diagnosis of autism was rare…and devastating.  Autistic individuals had an extremely low functional level and not much of a life to look forward to. 

    I don’t disagree with the concept of “autism spectrum disorders”, Asperger’s , and other appellations.  I do take great exception to the concept that the incidence of autism is increasing:  I don’t see how you can make that statement when the diagnostic parameters have changed to radically.

    I think to suggest environmental factors, thimersol, or other etiologies really does open a can of worms.   Face it, with DSM-IV and V,  almost any constellation of symptoms nets a diagnosis.

    I agree with MuddyWaterz’  comment regarding other “subjective diagnoses”; it keeps me aware of how much there is in medicine that we simply  do not know. 

  • mslingen

    Having a diagnosis is helpful in planning ways to help people overcome symptoms that may hinder being successful, independent citizens. At first, I cried my eyes out…we did not seek this particular diagnosis. We do not use the state financed support services, but are reimbursed by insurance for some services our child receives (a good bit comes out of pocket). We really do as much as we can as parents to reinforce things and work with him on our end.  I do not make excuses for my son’s behavior, but I have a basis for how to approach helping him understand when he needs to make changes in his behavior. He is quite happy and successful at school, even if he still speaks in broken sentences at age 7. My hope is that he will reach a point where services are no longer necessary, but I would never change who he is, a great and loving son and brother.

  • DavidBehar

    About 20% of boys have not spoken at age 3. Rich, entitled, parent bullies send the lawyers to plunder the school budget on worthless, and expensive special education. Come age 5, these kids are chatter boxes. That would have happened without expensive intervention. Instead of spending huge amounts on a defective but highly privileged child, that same money could buy 3 scholarships to an elite private school for poor, immigrant, deprived, but highly intelligent  children. They would then grow up to repay taxes 1000 times the amount invested in their tuition. The developmentally disabled return what? Nothing.

  • DavidBehar

    The main cause of the explosive rise in the rate of autism is the funding of worthless programs for these children. That funding has a much higher correlation with the rate of autism than any chemical in the water. Follow the money. It ends in the pockets of unionized teachers for worthless make work government programs, and is allocated by rent seeking members of the Democratic Party. The latter is the most powerful cause of the rise in the rate of diagnosing the disorder. I suggest that parents, teachers, and other professionals watch the movie, Rainman. That is an accurate depiction of autism. If your child differs from that portrayal, it is not autism but a pretextual, phony, condition designed to plunder the taxpayer. I would like to see a direct action movement where rent seeking teachers’ unions, lawyers, judges, rich parents are resisted. It should start with total shunning by all service and product providers. A boycott, and expulsion from all membership organizations. The justification is that rent seeking is a synonym for armed robbery. Try not paying your taxes for these crooks to steal, a man with a gun will come to your house and help you pay them. 

  • http://www.facebook.com/profile.php?id=558041620 Vikas Desai

    Any wierdo kid with a wild imagination can be diagnosed with autism spectrum disorder, it’s right up their with chronic fatigue syndrome and justification for use of medical marijuana as sufficiently vague enough that pretty much anyone can “adjust” their symptoms to fit the criteria. Reason unfortunately will not prevail on this one. 

  • Robert_helptalk

    Trolls, skeptics and parents without autistic children do not know how hard it is on mothers who try to bring their child into the world of successful social interplay. As a counselor I know there is little that can be done for children on the autistic spectrum – the little that can be done includes OT and speech, which benefit young scholars like no other treatments.

    We are paying a lot for the development of treatment modalities, which are being refined and used more efficiently in the classroom now more than ever, benefitting even children not on the spectrum.

    Those schools who do not incorporate such training programs send the child to behavior programs which do nothing for the child except increase his or her isolation. Some children, perhaps most autistic children, improve over time without professional, trained help. But it is like saying a partially blind or partially deaf person does not benefit from professional, trained help and will adapt. Yes, we as humans adapt, but I prefer to be trained, be a higher paid taxpayer, not live on the dole and enjoy work more of my choosing. We all benefit from more rather than less training. Unless we are talking about Mark Twain’s progeny: Born, thrust upon, or seek stupidity.

    • DavidBehar

       A government dependent make work rent seeker chimes in:

      “As a counselor I know there is little that can be done for children on the autistic spectrum -”

      Most have immaturity in speech and social skills. That immaturity is exaggerated into an extreme disorder, autism, to generate jobs for members of the Democratic Party

    • http://distractible.org/ Dr. Rob

       I agree with the benefit, Robert.  I do, however, wonder if the ones who have the greatest benefit are having their resources diluted.  Some of the comments on my original post on this subject were from parents of profoundly autistic kids, and they were bemoaning the fact that limited resources are given equally, meaning that kids who need it the most are no longer able to get what they need.  We need to be careful in using a clinical diagnosis to allocate resources, as it makes misuse of the diagnosis a temptation.  That’s not to say it is not valuable, just that there is risk.

      The bottom line in education is that we have a baseline deficit of resource allocation and fixing the problem for all students will take more than leaning on clinical diagnoses to get what should be available in the first place. 

      It’s the same as the old problem where entitlement stands in the way of real need (i.e. Welfare).  The truly poor and needy are hurt by those who see it as an opportunity to get money.  The problem goes beyond clinical diagnosis and social policy; the problem is in our human nature.

  • http://www.facebook.com/people/Margaret-Livingston/662823636 Margaret Livingston

    As the parent of what Dr. Lamberts says would have been called an “odd kid” years ago, a kid diagnosed as on the autism spectrum, I think he is being cavalier. He minimizes the suffering of such a kid in ordinary school situations, suffering that can be mitigated with some understanding and accommodation. The “Asperger’s” label gives us a language to talk about the issues, and the Americans with Disabilities Act some clout to insist on mitigation. Of course, in another era, our son might not have been diagnosed. He also might have been dead, traumatized by bullying or intractable failure, had he not had access to help. By the way, we have never used state-funded services and spent many thousands of our own funds on tutors and psychologists. 

    • http://distractible.org/ Dr. Rob

       I am sorry if I seemed cavalier.  The entire point of this post was not to disparage the idea of the autism-spectrum, it was to say that disease definitions are fueled by more than just clinical realities.  But I would think it is safe to say that we docs are under some pressure to make this diagnosis for the sake of the resources available to the patient.  The bottom line message intended was this: it used to be horrible to suggest autism, now there’s pressure to do so.  Any numbers need to be interpreted in that light.

  • LeoHolmMD

    I am suspicious that the increasing awareness, incidence and media attention around autism means there is a drug in the pipeline.

  • http://www.facebook.com/profile.php?id=1523336947 Ruth Woolcock

    As the mother of a daughter recently diagnosed with Asperger’s as a teenager, I still have conflicting feelings over the process and the label and what it will mean to her future but also found it to open a large toolbox of coping skills and understanding that have given her a handle on living in a world mostly peopled by those whose neural pathways are wired differently than hers.  Watching her strengths I can’t help but think she may fare better than her neurotypical peers in a world of technology-driven interactions and that evolutionary forces may favor spectrum disorders as the numbers of those with that wiring rise even further.

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