Autism Rate 2%, what now?

25 Mar

Autism prevalence data are always news makers. Although, maybe it’s just me, but the announcement of a new autism prevalence estimate for the U.S. didn’t seem to be as big a news story as previous reports. That said, so much of the discussion around prevalence estimates centers on “what does this tell us about the past” or “what about the future”.

“What does this tell us about the past” is the discussion around “was there/is there an epidemic (usually with an explicit or implicit reference to vaccines)”. “What about the future” is usually a discussion focused on the economic burden and what happens in we project the trends out to the future.

But what about right now? We have roughly 2% of our school age children in the U.S. who are autistic. Disabled to various degrees. Probably a like number of adults as well. For those who don’t accept this notion, keep in mind that one of the major themes of the recent report was how a large fraction of autistics were identified late. They had fallen through the cracks and were possibly not receiving the supports they needed. We are talking teenagers, not just young children. It isn’t that great a leap to say that we there is a large population of unidentified autistic adults.

Most news stories and most discussion will focus on one number: 2%. I would argue, and will argue, that a factor of at least equal importance is not how many autistics there are, but how diverse this population is and how little is really known.

There is no biological test for autism. As this study and many others have shown, the understanding of what autism is, even behaviorally, is still evolving. And this is important whether you take a medical model of autism or a disability model or some combination of the two.

We (a society of autistic and non-autistic people) need to give autistics the tools and supports needed to succeed in this world, with various definitions of success. And we can’t do that if we don’t understand what is needed. 2% is a number that can grab people’s attention. And that includes politicians. But to me, the bigger issue is the breadth of the spectrum. The diversity of the autistic population. Consider the report again. There are so many ways to look at the data, but let me pick some facts to highlight. The prevalence estimate for 10-13 year olds was about 2.4%. Of this, roughly half fall into the so-called “mild” autism category. Only 5% of parents placed their child into the “severe” category. Of course, there is no real definition of mild, moderate, or severe to use for this, and parents might be biased to report milder needs, but let’s go with the structure we are given. But, in the end, 1%, 5%, 95%, is less important than the fact that there are subpopulations of autistics which needs a very different support structure than others.

Many people discussing the new prevalence values focus on the need to have the money to provide supports (be it in the home, the school or the workplace, medical or non-medical) for a wide variety of autistics. But in order to do that, we have to know what supports and tools are needed. I know this is getting repetitive, but no amount of money can give autistics, parents, teachers, caregivers and employers the tools needed if we don’t know what the appropriate tools are.

There is a broad spectrum of autism, and a broad spectrum of ages. Perhaps the most overlooked area of autism, be it research or supports and services, are the needs of adults. Many parents tend to categorize autism by IQ, with a linear spectrum with those with lower IQ’s on one side and those with higher IQ’s on the other. Even with this simple model, we have a huge matrix of needs for autistics: with age on one axis, and IQ on another. But the IQ-category idea is too simplistic. Which means, the real matrix of needs we have to understand is multidimensional.

Ask someone outside the community who has a basic understanding of the autism discussion, “what should we do for autistics?” and you are likely to get, “behavioral intervention”. OK, for some fraction of a young population, that may be a good answer. Maybe, one might argue, truly individualized education plans (IEP) will allow parents and teachers to customize supports for the needs of the autistic during school. That’s how it is supposed to work, but this process would be much more efficient if we had better recommendations for autistic students of all ages.

It is worth taking a moment here to point out that here is a point where more money directly into services is needed. Mention special education to a school administer and you are likely to hear “unfunded mandate”, “budget”, and “encroachment”. We in the U.S. have never lived up to our responsibility to support special education as promised from a federal level (federal special education support is less than 1/2 what was promised). And it isn’t like state and local governments are supporting special education to the levels needed.

But that’s just school. What about transition to adulthood? Thank god for people like Paul Shattuck who has been asking these questions, but this study only came out last year. And adulthood and autism has recently been referred to as “the great unknown” in one paper.

And medical issues? These get a lot of discussion, especially in online parent forums. Ask what medical conditions are more common in autistics and you will likely hear, “GI complaints”, “immune dysfunction”, “metabolic dysfunction”. Anyone want to venture a guess as to what are, by far, the most common comorbid conditions to autism in children? Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these. And what happens in older populations? Another “great unknown”.

So, yes, 2% is big. And it’s important. And it will get people’s attention. But if we don’t know what tools or how to support any given segment of the population, it’s just saying how many people we can’t support.

Of course we need to take autism seriously. It doesn’t matter if 2%, 0.2% or 0.02% of the population are autistic, it is still important. But we need to recognize that there are whole areas of questions we haven’t even asked yet, much less found good answers for. It is hard to package this essage into a sound bite, but the focus needs to be on the breadth of the questions, not just te size of the population.


By Matt Carey

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20 Responses to “Autism Rate 2%, what now?”

  1. Low Budget Dave March 25, 2013 at 22:43 #

    Thanks for taking the time to write about this. I get frustrated every time I read about America’s budget priorities. We have money for all sorts of pointless military hardware, bank bailouts, oil subsidies, and endless corporate welfare, but when children need healthcare or education, all of the sudden, we can’t afford it.

    I am sorry if this is too political. It wasn’t meant to be. it was just meant to be depressing, I guess.

  2. Lara Lohne March 25, 2013 at 23:01 #

    As of last week, you can add my partner to the growing number of identified adults with and ASD. He also has bi polar disorder, PTSD and a currently unidentified personality or identity disorder. I am right there with you Matt. Instead of spending countless moneys on studies on prevalence and or cause/prevention/cure, let’s find out what is needed to support these people. That would mean a huge shift in where the talking and listening is done. Rather then listening to companies like Autism Speaks for that information, we all would need to start listening to the actual autistics themselves. They will tell us what they need, its up to us to listen.

  3. passionlessdrone March 26, 2013 at 01:12 #

    Hi Matt Carey –

    Nicely written article. I had some thoughts about these values that you (or others) may find tangentially of interest.

    Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these.

    What conditions are you talking about here? I guess MR and epilepsy would be my guesses, but I’d be curious to read something on this. It would seem, that this might be a guidepost to finding out if the incidence in adults is similar to what we see in children. (?)

    I wonder though, do we need to alter our projections of comorbidities based on these new ‘numbers’? In other words, I’ve seen several studies indicating a much higher risk of epilepsy in the autism population, with ranges in the 20-40% band. But do the new numbers mean that it really should be 10-20%? How much should we consider revising old findings based on these new numbers?

    I’m also wondering if anyone has considered the potential ramifications of a ‘watering down’ of autism? When my son was diagnosed, about six years ago, autism was considered a lifelong disability that had pervasive, debilitating effects. That sure seemed to be the case with my son. That doesn’t seem like the case anymore, now you could have slipped through the cracks until age 10; but that begs the question, were the issues really pervasive?

    The spectrum semantics can be pretzeled to support a gradual widening of the condition to any stratospheric incidence and can’t be effectively argued against; but at the end of the day black and white are both part of the color spectrum, but don’t have a lot in common otherwise. I know one thing, my son doesn’t have a damn thing in common with a child who went completely undiagnosed, and was in mainstream classes until they were 11 years old!

    As you note, we have already been at a place where services seem to be largely unavailable. The prioritization question is an important one, but I would submit that we might want to consider the long term, political ramifications of an ever growing incidence number.

    Here is how I see the potential political calculus working out:

    1) People don’t like paying taxes / big government is bad / whatever tea party bullshit.
    2) Decision makers start seeing these alarming bills from the educational system trying to provide services to a growing number of children.
    3) Decision makers start to wonder to themselves; if 2% of every adult had ‘autism’ in 1950, we didn’t have much of a problem with employment, crime, homelessness, whatever and we sure weren’t providing all of these services. Why do we suddenly need to do so?

    Or,

    In the 1990s, we had 4-5% unemployment for several years; either our unemployment rolls were 1/2 comprised of people with autism, or it isn’t that hard to get a job if you have autism. Why are we providing all of these expensive services now? What is the big deal about having autism?

    I’m not saying I agree with this logic, but I think we can agree that nuance isn’t a big thing in the political arena. We might be able to dance on the grave of the thimerosal hypothesis when the autism spectrum hits 5%, but I’m not sure that people like me are going to be too happy with the eventual outcome. After what you’ve seen, do you really think we will approach a place where our children get a bigger slice of the funding pie, as opposed to a smaller one?

    I do very much appreciate your thoughts regarding how little is known. At least that’s a familiar feeling!

    – pD

    • Myria March 26, 2013 at 05:55 #

      I doubt that half the people on unemployment at that time were autistic, but I also seriously doubt the majority of autistic adults were employed at the time. “Unemployed” does not necessarily mean receiving unemployment benefits. I am autistic and so are several of my friends. Of all of us, maybe one is capable of applying for unemployment (or any other services) without assistance, and that person would be disqualified on the basis of not having a job that qualifies for benefits. Some of my friends are employed, but others are either on the edge of homelessness or living in domestic relationships that provide support (interdependent relationships).

    • Myria March 26, 2013 at 06:23 #

      (Sorry, commenting in chunks is easier for me.) As for people diagnosed late not having pervasive issues, it is not uncommon to remain undiagnosed no matter the severity of your issues if you can speak part of the time – even if your speech is extremely limited, or you can’t reliably dress yourself, or you have severe sensory issues. Being female, not having access to medical care, not being white, being misdiagnosed with something else (or having a comorbid diagnosis) are a few of the reasons someone might receive a late diagnosis.
      Also remember that someone can be more affected in one area and less affected in another. For example, someone can be non-verbal or non-speaking and have milder sensory issues than someone with typical language and/or speaking skills.

    • Autistic March 26, 2013 at 12:02 #

      I seriously hope you’re joking when you claimed Autism has been watered down when in fact the message that Autism was not devastating came from Autistics.

    • chavisory March 26, 2013 at 13:23 #

      “That doesn’t seem like the case anymore, now you could have slipped through the cracks until age 10; but that begs the question, were the issues really pervasive?”

      I slipped through the cracks till age 28, and yes, the issues were really pervasive. A combination of an early missed diagnosis due to misinformation, denial, and unwillingness to see autism in girls was likely at play. I struggled terribly, and no one wanted to see it.

    • Sullivan (Matt Carey) March 27, 2013 at 23:42 #

      Sorry to take so long to respond. Others have mentioned this in one way or another:

      Unemployment rates do not include long-term unemployed. People on disability or otherwise unemployed for years are not reflected in the 4-5% figure you cite.

      “my son doesn’t have a damn thing in common with a child who went completely undiagnosed, and was in mainstream classes until they were 11 years old”

      Your son isn’t human? Doesn’t have rights? Can’t learn? I’d probably not make the above statement in an IEP meeting.

      That said, you made a bit of a logical error there by conflating “undiagnosed” with “completely” and “in mainstream classes until they were 11 years old”. Consider the UCLA/Utah autism project and the results they published last year. They reported autism prevalence for Utah back in the 1980’s. When they went back and checked recently, they found that notable fraction of those kids were autistic but were not identified in the original study. They had *lower* IQ’s (my recollection was IQ average in the 30’s) than the kids diagnosed in the 1980’s.

      “After what you’ve seen, do you really think we will approach a place where our children get a bigger slice of the funding pie, as opposed to a smaller one? ”

      I don’t know, but if we don’t start advocating strong for better services and “slice of the pie” for adults soon, we will join previous generations of parents who found that there is a very small sliver of pie set aside for their now adult kids.

      “Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these.”

      I have to go back through the video from the last IACC meeting and see if they (Craig Newschaffer’s group) discussed what the various conditions included were. I just have the slides here on my desk.

      “I wonder though, do we need to alter our projections of comorbidities based on these new ‘numbers’? In other words, I’ve seen several studies indicating a much higher risk of epilepsy in the autism population, with ranges in the 20-40% band. But do the new numbers mean that it really should be 10-20%? How much should we consider revising old findings based on these new numbers?”

      If you look at the CDDS numbers, you will see the fraction of autsitics with epilepsy has been steadily declining as the identified autism population grows.

  4. David N. Brown March 26, 2013 at 04:14 #

    It’s ironic that this would come out now, because I was just writing a section for my master’s project report on prevalence figures. I presented the position, which I would have considered quite liberal, that the total prevalence of autism is probably not more than 2.5%. I’m not inclined to go back and hedge my bets, but clearly things are moving forward.

    Looking over the first page or so of the report, I was struck by something that I regard as a validation of a long-standing suspicion of mine: The report specifically notes that a specific diagnosis is REQUIRED for special education services, and allows that this could be a factor in when diagnosis occurs. I wasn’t even aware of that angle, but it’s been my belief for some time that diagnoses made by clinicians are made in no small part based on what will or will not get someone services. The “big picture” here would seem to be a catch-22: Clearly, simple humanitarian need is a compelling case for giving a diagnosis even if it is known to be imperfect. But in the long run, it could make it harder to have the diagnosis taken seriously, especially when enough time has passed for the criteria to be revised.

  5. Marty M March 26, 2013 at 14:10 #

    Yes, there are adults with autism who are not all Asperger’s but the main topic when it comes to autism seems to be those who have mild issues and little awareness of those with challenges in addition to autism such as nonverbal or being limited verbal and, of course, persons who still have GI issues. My son, age 39, fits into the mystery category. He showed autism at birth and I think it was because I caught the Hong Kong flue at the time he was conceived so I don’t rule out vaccines as a possibility for autism in other people. Mine just was not a vaccine baby. And, mine has paralyzed bowels because he was neglected in an institution where he was making bowel progress until the administrator found out he would only be paid for educational work and, without telling me, quit toilet training. I found out a way to have him mechanically toileted similar to an enema. Parents never give up. Martha

  6. Val Stilwell, MSCS March 26, 2013 at 21:36 #

    Whatever the facts are, one thing we know for sure is that Assistive Technology (AT) is going to play a significant role in helping people with cognitive disabilities function to their highest abilities.

    Ironically, the people who need the AT most are the last to get it because the schools, teachers, and quite often family support people are hammered with restraints. Learning what’s available, learning how to use it, and teaching those who need it are the keys to successful adoption.

    For developers, the fundamentals of Universal Design is key – develop tools that can be customized per user so that teachers learn once with multiple students uniquely benefiting the efforts.

  7. Carol Morris March 26, 2013 at 22:57 #

    My son is one of the kids who “slipped through” without being diagnosed until age 12, if you call being at risk of expulsion “slipping through”. He may not seem severe to parents who are awaiting the day their child will potty train. However, looking at it the other way, this very gifted, highly verbal boy from a stable, loving family had problems severe enough to get him bullied, ostracized, hating school, distrusting authority, suspended numerous times – and blamed for all of it, because the absence of a label caused adults to assume he was simply uncooperative. At 16 he has been hospitalized twice with mental health issues, still hates himself and battles anger and depression. Please don’t assume that anyone is OK just because they slipped through.

  8. Carol Morris March 26, 2013 at 23:13 #

    One other comment, regarding the need to understand what services will be required: There are currently no programs for the “gifted autistic” in our school system, which means my son is barely surviving, instead of thriving as he could with the proper support. He is at risk of failing to become a contributing member of society and the work force. He may not need as many services as more “severe” children….but if he grows up to be a disability check receiver instead of a taxpayer, there will be fewer public education dollars for the children who come after him.

    • Lara Lohne March 27, 2013 at 00:15 #

      Carol, Your son’s experience is very similar to what I experienced and definitely what my partner experienced in school when we were children. Our son is verbal, but delayed and not potty tried but we are working on it. My partner is 40 and was just given a diagnosis of Asperger’s Syndrome, along with other co-morbid (due to living his life undiagnosed?) mental health disorders. Talk about falling through the cracks. The problem is, as an adult, he may not even qualify for services, if we can find any that are available to him.

      It’s hard enough getting services for our son, who is bright, but not ‘high’ functioning as many people would put it. He rocks and flaps and hums and visual stims a lot. I empathize with your situation, because there are too many of our little ones who are not able to get what they need, but need a lot more then what people assume simply because they are verbal. I don’t think the big autism advocacy companies are going to help, it’s up to self advocates, allies and parents to do the work to get the services that are necessary. If we can all learn to speak as one, unified group of people with the same goal in mind (helping those that need help now instead of trying to find a cure) then people would have to listen to us.

    • cognitopia March 27, 2013 at 21:42 #

      I sure hear this a lot – the “catching up gap” of the school needs, budget restraints, technology integration, and the simple fact that schools are currently overwhelming those trying to deal with the sheer number of kids that need help.

      Parents need to become really savvy with IEPs, become technology inclined, and look towards integrating tools that can transfere from school to home to work that also serve a long-term purpose like personal organizers, day planners, and reminders for tasks and transitions.

      As if parents don’t already have enough to do as well, this effort will help schools adapt – the first inklings of success will spur on others to keep AT integration moving forward. Not to mention, we’ll see better results for kids like your son who has such great potential to live a more self-determined life.

      • Carol Morris March 29, 2013 at 04:36 #

        I would love to see our parents and school staff be more AT savvy. The only AT my son has is the Alpha Smart I found for him online. At the last IEP meeting all agreed that it was helpful, but when I said that I thought a laptop or ipad would be more appropriate, they asked me if I had one I could send in. (I don’t.) Once again, it boils down to dollars, and with the trouble our county school system is in, I’m not holding my breath for their AT capabilities to expand significantly anytime soon.

  9. BBoucher,OT,PhD March 28, 2013 at 16:07 #

    “Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these. What conditions are you talking about here?”

    This reference is a little old, but I found it helpful for depicting the breadth of neurological involvement with autism. The book: The Neurology of Autism. Perhaps by searching for more current published work of the contributors to that book you can find a meaningful answer to your question.

    • Sullivan (Matt Carey) March 28, 2013 at 17:33 #

      I’m unsure of what you are saying here. I am citing pre-publication data presented this year.

      • neverdefiled March 30, 2013 at 12:55 #

        It sounds like a response to PD’s question upthread.

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