Posted by: chanson | September 8, 2010

Changing diagnoses of kids’ learning disabilities

Recently I was talking with a fellow mom, and the subject of vaccines came up.  I explained that the supposed connection between vaccines and autism has no scientific basis, and the other mom asked, “Then how do you account for the increase in cases of autism?”  (Not in a hostile way, just a question.)

Without hesitation, I replied that it’s because of the change in awareness and diagnosis.

I’d kind of like to ask the folks here if you think that’s the right answer, or what you would have responded.  And also I’d like to tell you my (personal, anecdotal) reasons for my own response:

One of my children has been diagnosed as being on the “autism spectrum.”  But the thing is that his personality quirks (or social problems) are exactly the same as those of several others in earlier generations of our family.  The one person in the family who displays the most blatant, textbook example of “Asperger’s” symptoms was born in the early forties (right around the time the syndrome was first identified) — so obviously he wouldn’t have been diagnosed when he was a child.

I think it’s great that people know more today and can tailor educational programs to the particular needs of kids — unlike when I was a kid or when my parents were kids, and you just got to be labelled “the weird kid,” and good luck to you!

Another example is Dyslexia.  A few generations ago, you would just have been labelled as slow or stupid, and too bad for you.  Today, neurologists understand better the parts of the brain that are used in reading.  If those parts underdeveloped, teachers can compensate by using additional sensory channels such as colors, tones, and spatial reasoning.  This example has come up recently in my experience since I’ve been working on the software suite Dybuster — which takes advantage of this multi-sensory approach to treating Dyslexia:

It is my impression that the situation is similar for full-blown autism — kids had it but it just wasn’t recognized as such.

What do you think?  Is that the complete explanation, or has autism actually been increasing in the population?  (Note: I did google this question before posting, but the results seemed kind of ambiguous, so I thought I’d ask for other opinions.)

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Responses

  1. Steven Novella tackled this back in December, with statistics from the CDC and other sources:

    http://www.theness.com/neurologicablog/?p=1374

    From his conclusion:

    “ASD diagnostic prevalence has increased in the last 20 years has increased and is now around 1%. However, the epidemiological evidence strongly suggests that most or all of this increase is due to broadening the diagnosis and increased surveillance – leading to more and earlier diagnosis.

    This still means that autism is a huge health issue that deserves funding and attention. It does not imply, however, that there is some causal factor, such as an environmental factor, that is increasing the prevalence of autism.

    However, it is also undeniably true that a real increase in prevalence cannot be ruled out, although it would only account for a part of the total increase. The fact that older age groups also have about a 1% prevalence strongly suggests that any real increase in ASD must be small. But it could be there.

    • Rob — Thanks, that’s essentially what I was thinking, but I hadn’t seen that article.

  2. What Rob said.

    I have a son who has been diagnosed with PDD-NOS, but it would be quite easy to dismiss his differences as “quirks” without a diagnosis. The diagnosis gives him access to support, therapy and accommodations that he might otherwise not receive, but without which he might not be able to function fully in society.

    It is not surprising that higher incidences of autism are associated with living in wealthier areas; where help is more readily available, people will access it.

    • Squillo — exactly. As I said, I’m very happy to have tailored help.

      I just use the word “quirks” because I don’t want to see it as a terribly negative thing — I love my quirky family the way they are! 😉 And I’m also glad to have the extra help and understanding, rather than just assuming that those who are different deserve to be bullied for it.

      • Yes–and BTW, I have no beef with the word “quirks”–I find them quite endearing. Much nicer term (to my ears) than the sterile “behaviors,” anyway.

  3. Up until a month ago or so I would have answered the same thing. The the US Senate had hearings a couple of months ago that just left me with even more questions.

    I blogged about it at the time:http://lifewithasperger.wordpress.com/2010/08/07/no-answers-just-questions/

    The experts testified to the Senate that a broadening of the diagnostic criteria could not account for all of it. It all just leaves me scratching my head.

  4. My son was diagnosed by a speech/language pathologist twenty years ago with oral motor dyspraxia. He qualified for a special ed. preschool that specialized in children who could not speak but who could hear.

    It was not a coincidence that the deaf/hard of hearing preschool was next door. The program my son was had started several years before when they were getting kids in the hearing impaired programs who could not speak, but could hear.

    When my son started his program went up through 3rd grade and had about thirty kids, and the deaf/hard of hearing program had about 80 in that school (through fifth grade). As time went on, my son’s program expanded to fifth grade, then finally to a high school program. The deaf/hard of hearing program shrunk to less than a half a dozen kids in the school (one big factor was the Hib vaccine, plus cholear implants, and the school district charging more for out of district kids, so no more suburban kids). That program has moved to a smaller more centralized location.

    It seems many more kids ending up in my son’s program were referred by concerned teachers, and others because the awareness was not there. One child in my son’s special ed. kindergarten was in the class because the private school teacher told her parents that her speech was not progressing normally, and they were not capable to handle her needs (she improved enough to go back that school in middle school).

    I found myself sometimes politely commenting on the lack of speech of a young child at the playground to his mother. One told me that her doctor said he was fine, yet the next year I saw her and the child at that school, having been referred by another private school teacher.

    This was in the early 1990s, then the internet hit, and there was more information. I have witnessed the increase in both good information (the Wrights with legal information), and the bad information (ah, yes, Allan Phillips, another lawyer). There seems to be more of the latter.

    I have spent lots of time in speech/language therapy waiting rooms. I have known lots of kids with lots of diagnoses (and we have had the most interesting birthday parties!). When I look back, several of them would have been given autism labels today (like the two boys who were formally diagnosed with hyperlexia).

    As it is, a school psychologist did finally note that my son seemed autistic… during his last year of high school! Of course, she added that while the high school did have an Asperger’s Program, he would lose services. So we just kept his IEP based on his needs, not any random diagnosis.

    He turns 22 years old on Sunday, and will start back at community college with disability services later this month. He had been suspended for a year due to grades, hopefully he will do better. My younger son turns 20 (today!), and has moved out of the house to his own apartment which he pays for while working and going to college. Yes, there are some psychological issues with older son on how things come easier to his siblings.

    (sorry for rambling, but this is a hot button issue with me!)

  5. My understanding is that the adult population with autism spectrum disorder is about the same in proportion as the child population. That, right there, would clinch it as far as I’m concerned (the only confound I can think of would go the wrong way – that people with ASD might die at a younger age and that autism rates have actually been falling despite diagnostic changes).

    If I’m wrong in my impression, by all means correct me.

    There is a part of me that would be willing to believe that autism, ADD, and other disorders are rising at least a little bit due to screen time. I could imagine babies stuck in front of a Baby Einstein DVD instead of interacting with parents and siblings falling behind in their social development, or having attention problems. I haven’t seen anything to back that up, but my personal prejudices would expect it.

    • Hmm. If some disorders are due to lack of communication, it might be due to lack of parental face time…?

      • Dear Saskia,

        Blaming childrens’ autism on parental behavior is old, tired, hurtful and entirely inaccurate.

        While we do not yet know exactly what causes autism (in all its different manifestations), differences in brain structure and in neurological processing, especially of visual and language stimuli, seem the most promising.

  6. It appears increased surveillance and broader diagnostic categories are largely responsible for the significant jump in cases. While scientists (and the US Court of Federal Claims) have essentially dismissed the vaccine link, they are still exploring a combination of genetic and environmental factors. As with other developmental disabilities, they’re still looking for answers.

    http://www.sciencebasedmedicine.org/?p=95
    http://www.webmd.com/brain/autism/searching-for-answers/autism-rise
    http://www.npr.org/blogs/health/2010/03/court_vaccines_dont_cause_aust.html

  7. Hi Grimalkin,

    There have been two recent studies on autism prevalence in adults.

    One was published in 2009, on adults in the UK. As these sorts of studies can be difficult for lay readers to understand, there’s a discussion at LeftBrain/RightBrain that may be useful. The author, Andrew Cox, is an academic pharmacologist in the UK. Additional comments are from equally knowlegeable sources, such as Joseph, who writes the blog Natural Variation on the science of autism. This study was also discussed at another reliable blog, Just The Vax

    The other study, published in 2010, was on adults in Iceland, specifically among adults with severe intellectual disability. The study was discussed at LeftBrain/RightBrain.

  8. Thanks, Liz. I must have read about that study somewhere and forgotten the source.

    It’s always nice to have my biases confirmed 😉

  9. I once heard that the game when you go to a boring lecture in a normal college is to count the people in the audience with Asperger’s. If you went to a place like MIT or CalTech, however, the game is to find the people who do NOT have Asperger’s.

    Most of these people are, of course, not diagnosed. They were just the slightly to very weird kids who now would be in special ed.

  10. Carolyn, that’s exactly how I see it! My family also has tons of undiagnosed Asperger’s–yes, this is my completely anecdotal and unscientific observation. But lots of MIT, math geeky, robot building types…who don’t make a lot of eye contact. You know, the slightly weird kids.

    A cousin who married into the family and is a speech therapist and I went OFF about it once together. She’s convinced there’s undiagnosed ASD on my dad’s side.

    And I guess that’s why it doesn’t scare me as much. I grew up with these “quirky” people, and I get it. And it’s kind of great, as you say, that now that there is a “diagnosis,” they can get therapy and help. I am almost sure my dad could have benefitted from it. He’s so socially awkward but such a smart guy.

    So I’ve been watching out for my son to see if he shows any signs of the “quirks.” But I haven’t been scared at all.

  11. I read a theory that sounded very plausible to me (and that’s all I got, “sounded plausible”, so take it for what it’s worth), that any increase over what increased diagnosis has produced might be due to assortive mating. That is, that there is some (perhaps small) genetic component to ASD. And when women started entering traditionally male fields, and the workforce, in real numbers, men and women who had ASD, or were perhaps just somewhat geeky, could find each other much more easily. I would expect online dating to enhance the effect. In our culture, a certain level of obsessive attention to narrow subjects can be highly adaptive in certain senses (might get you into MIT, for example). Like sickle cell anemia, a trait that is adaptive in a mild form might be maladaptive in a stronger form. If more people with mild ASD are finding each other and having children, if there is any genetic component, we would expect more children with a stronger form. That would be true even if the ASD is only 10 or 20% heritable.

    Not my theory, all a thought experiment- but I found it pretty likely, in my head anyhow.


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