U.S. announces 2% autism rate. Again. And it’s dependent on a change in the way a survey is worded. Again.

17 Nov

Last week a study was released showing an autism “rate” in the U.S. of about 2% (an estimated prevalence of 2.24% to be exact). Luckily one of the best science journalists out there focuses a lot of her attention on autism and covered this story. I’m writing of course about Emily Willingham and her article Increase In Autism Diagnoses Not An Increase In Autism.

The study in question is Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey. The abstract is at the bottom for those interested.

While other articles are discussing the large “increase in autism”. Or, as in this Reuters article, US autism numbers soar in which we read what must be a confusing message to many:

The results reflect a near doubling in autism rates over the past three years, but the US Centers for Disease Control, which released the data last week, says the shift is largely due to a change in the way the survey was worded.

Here’s the thing, before I saw what the study was, I actually thought that the discussion was about this study: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. In that study, released in 2013, a 2% autism “rate” was announced. And that was a significant change from the previous survey data (using the National Survey of Children’s Health). And like previous estimates based on survey’s the change is at least due in large part to a change in the way the survey was presented to parents (I’m looking for a link to the discussion of the change in survey questions that affected the 2013 estimate, but there was a shift and it had a big impact).

Thankfully much of the media, and even Autism Speaks, are pointing out how this 2% figure doesn’t represent a “real” change in autism prevalence, but is largely dependent on the study methods. Others can be counted on to shout “epidemic” and ignore some of the key reasons why this doesn’t reflect a real increase.

Number 1 reason–the autism prevalence is basically the same for kids who were 3-10 and kids who were 11-17:

AutPrevalence

A real increase would show up as a higher prevalence for younger kids.

One thing we see is a decrease in disparity for autism prevalence by race/ethnicity. African Americans have a slightly lower autism prevalence (it’s unclear whether this is statistically significant or not), and Hispanics have a decidedly lower autism prevalence (1.49% vs. 2.55% for Caucasians). Which means we still have far to go to identify and bring services to all autistics. And it also means that the autism prevalence estimates will continue to rise as we do identify more in under diagnosed populations.

AutPrevalence race-ethnicity

But let’s focus on the important part of that–we still have a large under-diagnosed/under-served population and it is largely among Hispanics. We really need to be focusing more attention on remedying that situation.

Here is the abstract for the current study:

Objectives—The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including
question reordering and a new approach to asking about autism spectrum disorder (ASD). This report examines survey-based estimates of the lifetime
prevalence of ASD, intellectual disability (ID), and any other developmental delay (other DD) following the inclusion of a standalone ASD question, the
inclusion of specific diagnoses in the ASD question, and the ASD question preceding the other DD question, and compares them with estimates from
previous years.

Methods—In NHIS, one child is randomly selected from each family to be the subject of detailed questions on health conditions, functional limitations, and
health care utilization. Parents are asked if a doctor or health professional had ever told them that their child had each of a series of developmental disabilities.
Prevalence estimates of ASD, ID, and other DD for children aged 3–17 years were calculated using data collected in 2011–2014.

Results—The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on
2011–2013 data. In contrast, the prevalence of other DD declined significantly from 4.84% based on 2011–2013 data to 3.57% based on 2014 data. The prevalence of ID did not significantly change from 2011–2013 (1.27%) to 2014 (1.10%). The prevalence of having any of the three conditions was constant across survey years.

Conclusions—The revised question ordering and new approach to asking about developmental disabilities in the 2014 NHIS likely affected the prevalence estimates of these conditions. In previous years, it is likely that some parents of children diagnosed with ASD reported this developmental disability as other DD instead of, or in addition to, ASD. Following these changes, the 2014 ASD estimate was more similar to ASD prevalence estimates from other sources.


By Matt Carey

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32 Responses to “U.S. announces 2% autism rate. Again. And it’s dependent on a change in the way a survey is worded. Again.”

  1. passionlessdrone November 17, 2015 at 15:42 #

    Imagine how high we could get if the ASD question was the first one asked!

    As pointed out in other articles, if we assume that this value isn’t a total joke, this value is likely *low* considering the variability you see attached to minorities and/or SES. Sheesh, in the totally not a joke study in Korea they found 2.5%, but nearly all of them were undiagnosed! We’ve already managed to diagnose 2.5%, and still have work to do. If you could buy stock in ABA therapists in Korea, that’d be a good buy.

    Remember the good old days when the England “not a joke” study on adults found a 1% prevalence? I do! Back then, that study was hailed as evidence of a static rate of autism, because the numbers were largely in line with children, and in fact, the number of adults with autism were uniformly grouped across the adult lifespan. So it goes. What a flawed study, for every person with autism they identified, they missed *at least* 1.5 adults with autism! There were some full population studies in Sweden that hit 1% also, but they must have been pretty terrible.

    This is terrible news for those of us whose children are pervasively affected by autism, those of us whose children will be dependent on others for their physical safety for their entire lives. Why? Because the narrative has gone from:

    “Autism is a grave developmental disability that has lifelong, negative consequences for the ability to live an independent life”

    to

    “Autism is so widespread, so benign, that we can literally change the ordering of a question on a survey and increase it’s ‘prevalence’. Because it was invisible to us, as a society, otherwise.”

    Being profoundly disabled isn’t something that people weren’t noticing because they got asked other questions first. If we want to let the soft scientists take over the definitions, that’s fine, but we should as much, and acknowledge there are going to be implications to those of us whose children face profound challenges. How many federal funds would be going to autism research if the face of autism had always been John Elder Robinson? “We must investigate early intervention before our children are all successful engineers!” Would ABA services be covered by insurance if the narrative had always been that we *literally* could not detect autism thirty years ago because we weren’t ordering our survey questions correctly? Why bother mandating treatment coverage if in a literal sense, we *could not detect a problem with these functionally identical children* thirty years ago?

    We have officially reached the point where autism diagnosis is functionally meaningless. Who cares what number gets published when it gets a vaguer definition with each iteration?

    /endrant

    • Sullivan (Matt Carey) November 17, 2015 at 17:33 #

      Good to see you again, Drone.

      I will state, you are inserting a phrase in this sentence to build a straw man:

      ““Autism is so widespread, so benign, that we can literally change the ordering of a question on a survey and increase it’s ‘prevalence’. Because it was invisible to us, as a society, otherwise.””

      I’ll have an article up sometime in the near future about the great anti-epidemic of intellectual disability in California. Why bring that up? Because it’s not a case of “gee, these kids had no struggles and just happened to get a medical professional to call them autistic because, well, they had nothing better to do than mess with the autism prevalence.”

      And, yes, there are a LOT more autistic adults that there are diagnosed autistic adults. And had more people actually advocated for awareness and acceptance of that fact, perhaps we would not only have accurate numbers, but we would be bringing support and services to those autistics.

      But let’s just call whatever attempts that have been made “not a joke” and continue to take a look at the sand that surrounds our buried heads. That way, when our kids attain adulthood, nothing will have changed and there will remain no good services.

      Yeah, that sounds like a good strategy. I can’t lay claim to designing it. It’s been the accepted strategy for the autism parent community for decades.

      • passionlessdrone November 18, 2015 at 01:28 #

        > Good to see you again, Drone.

        Thanks! FYI – reposting after wordpress error. If you see two builds, delete one.

        > I will state, you are inserting a phrase in this sentence to build a straw man:

        It’s not a straw man though. If you showed any sane person a video of my son, then a video of John Elder Robinson, and then asked them ‘what do these two people have in common?’, it would take roughly 1,000,000 guesses before they said: “a pervasive, lifelong developmental disorder.” That’s the difference I see, a disorder that may cause challenges, but those that can allow an individual to become independent, and articulate his or her needs, and an individual who will be dependent on others for the rest of his life, who cannot tell you if they have a headache or not. Trust me, I’d trade my son’s build of autism for any of the internet aware, got-diagnosed-in-midlife-because-I-understand-the-concept-of-a-psychiatrist *any day*. Whatever challenges faced by the ‘new autism’ crowd, they pale in comparison to the challenges my son faces; compared to melanoma, sunburn is benign.

        > I’ll have an article up sometime in the near future about the great anti-epidemic of intellectual disability in California.

        Sounds great. I’ll probably read it.

        >And had more people actually advocated for awareness and acceptance of that fact, perhaps we would not only have accurate numbers, but we would be bringing support and services to those autistics.

        I have serious doubts on the second part; I think the more likely result would be that people wouldn’t figure we should be expanding the social safety net to help people who have largely gotten by on their own to this point. The general population isn’t that great at detecting nuance. It’s like we are asking for services and support for people with restless leg syndrome; sure it is an issue, but we pretty much got by for forever without providing services for it. What’s the big deal about continuing not to provide services for it?

        > But let’s just call whatever attempts that have been made “not a joke” and continue to take a look at the sand that surrounds our buried heads.

        Hah! Well, you were around (I think) when I joined the autism verse in 2005. If I took *those* numbers and believed them, then the joke would have been on me! Same with 2007 numbers, 2009, 2011, and 2013 numbers; all a big experiment in how much fancier we are getting at detecting pervasive developmental disorders, and how much better we are at ordering questionnaires. I’ve accepted prevalence fatigue, no matter what happens, a bigger number can be published with the exact same narrative, “we sure are getting better at this!”.

        > That way, when our kids attain adulthood, nothing will have changed and there will remain no good services.

        I think that will be the case if we continue to insist to the public that people with jobs in STEM have the same functional label as people with severe autism. Funding will take the path of least resistance. Maybe we just will disagree to this point.

      • Sullivan (Matt Carey) November 18, 2015 at 06:08 #

        “If you showed any sane person a video of my son, then a video of John Elder Robinson, and then asked them ‘what do these two people have in common?’, it would take roughly 1,000,000 guesses before they said: “a pervasive, lifelong developmental disorder.””

        So, autism clinicians are not sane? Autism researchers are not sane?

        “got-diagnosed-in-midlife-because-I-understand-the-concept-of-a-psychiatrist ”

        Yes, let’s downplay the challenges that other people face. Let’s make fun of them in fact and claim that they only were diagnosed because they “understand the concept of a psychiatrist”.

        A friend of mine is one of those you deride. Of course he was also nonverbal until age 3 and in special ed until 2nd grade. But, hey, he only got a diagnosis when he was middle aged so he had zero (and has) zero challenges. He can’t be autistic because all the huge numbers of clinicians that were out there when he was a child would have diagnosed him then.

    • Sullivan (Matt Carey) November 17, 2015 at 17:40 #

      “We have officially reached the point where autism diagnosis is functionally meaningless. Who cares what number gets published when it gets a vaguer definition with each iteration?”

      Ironically, you can find almost no response from those who promote the failed vaccine-causation theory.

      This may have something to do with the fact that the rising prevalence pretty much negates their ideas. The rising prevalence can’t be due to thimerosal–removed from vaccines years ago. It can’t be due to MMR, which has had flat uptake for 10-20 years. There aren’t new vaccines added to the schedule.

      And, again, this ignores the fact that the prevalence is flat for the two age groups reported. You did see that, right? Draw a line through those two datapoints and then claim “there aren’t any autistic adults” and one is pretty much demonstrating a complete denial of the facts.

      You might want to pick up Steve Silberman’s Neurotribes. He makes a compelling case that the spectrum is the original concept of autism. As put forth by the team that basically discovered it–Asperger’s team. The more restrictive concept of autism was put forth by Kanner in his attempt to own autism.

      The key point there–the idea of autism as a spectrum and as being more widespread than we have thought recently dates back to the 1930’s.

      • passionlessdrone November 18, 2015 at 01:40 #

        > Ironically, you can find almost no response from those who promote the failed vaccine-causation theory.

        OK. But I doubt we should expect anything rational from those folks in any case. Sure. The ‘we asked questions in a different order’ crowd is more sane than the vaccine causation crowed. The term that comes to mind is being damned with faint praise.

        > And, again, this ignores the fact that the prevalence is flat for the two age groups reported. You did see that, right? Draw a line through those two datapoints and then claim “there aren’t any autistic adults” and one is pretty much demonstrating a complete denial of the facts.

        Only if you don’t think that the numbers are a joke though! Any two numbers can be datapoints if we feel like it; the trick is having confidence that they realistically represent reality. For example, if we drew a line from the 1% of England adults and these numbers, would you ‘accept the fact’ that prevalence is up between children and adults? Oh wait, suddenly we need more data points!

        My position is that I don’t have any confidence in any of the numbers that have come out since I came along journey autism. Why? Because they’ve been a never ending slope, but always with the same explanation as to why *this set* of numbers is different, and ‘real’. When Fombonne did a population study in England on kids and came back with standard numbers of 1% across roughly the same age ranges you quote above, it was ‘proof’ that autism was stable. Now we are supposed to swallow a doubling of those numbers without notice, and just pay attention to the fact that they are the same again. Why have confidence in any set of numbers when the underlying methodology seems so god awful between runs?

        > The key point there–the idea of autism as a spectrum and as being more widespread than we have thought recently dates back to the 1930’s.

        White and black are both on the color spectrum, but that is the only thing they share in common. That is what I meant when I said that every iteration of numbers is largely meaningless; we can generate an endless number of color variations between the two, but that doesn’t make black and white any more similar.

      • Sullivan (Matt Carey) November 18, 2015 at 05:40 #

        “The ‘we asked questions in a different order’ crowd is more sane than the vaccine causation crowed. The term that comes to mind is being damned with faint praise.”

        I’m waiting for your “sane” response as to how the prevalence increased for older kids.

        Still waiting.

        I’m sure this will be worth the wait.

        Go ahead.

        Then why not use “sane” again and stigmatize those with mental illness. Because we in the autism parent community have the right to abuse other disability communities.

        Go ahead. What factor caused a “real” increase in autism for kids who were old enough to be in the older surveys. It can’t be a social factor like a change in the way the survey was conducted, right? So, kids who were 10-17 years old suddendly jumped from 1% to 2% prevalence in a couple of years.

        Shall I go on and on and on and on and belabor this? Because denying that some factor other than a true increase in autism prevalence is at play here.

      • Sullivan (Matt Carey) November 18, 2015 at 05:53 #

        “White and black are both on the color spectrum, but that is the only thing they share in common.”

        Sorry to be pedantic, but white and black are not part of the color spectrum.

        White is all the colors in the spectrum. Black is an absence of color.

        Which I only bring up because your statements on the autism spectrum show that you don’t understand it either. You can deny there’s a spectrum, but that’s all it is.

      • passionlessdrone November 18, 2015 at 15:03 #

        Lack of nested replies on this build of WP is weird. Anyways. . .

        > Which I only bring up because your statements on the autism spectrum show that you don’t understand it either. You can deny there’s a spectrum, but that’s all it is.

        I can deny that it is useful for assigning degree of impairment, and this is critical, a condition that is classified as a lifelong, pervasive developmental disorder, *includes significant impairment across the lifespan*.

        Let’s say you suffer from cluster migraines. Let’s say that I get sinus pressure. We both have headaches. Is that really the lowest level of discrimination we can apply? Is the spectrum of ‘headaches’ really a useful functional assignment if we wanted to determine eligibility for services, or appropriate sick leave from work, or development of treatment protocols? From a technical perspective, sinus pressure and cluster migraines are both headaches, but differ so significantly from one another that sharing that label for research purposes is not only worthless, but actually hinders progress.

        > I’m waiting for your “sane” response as to how the prevalence increased for older kids.

        But I already did, earlier in this thread. “Who cares what number gets published when it gets a vaguer definition with each iteration?”

        It increased because autism appears to be the diagnosis de jour. Wave a stick around and give an ASD diagnosis to anyone that gets pointed at. If they aren’t measuring the same thing, the fact that prevalence increased doesn’t mean anything. I’m not here to argue that 2% represents an epidemic, more to argue that giving credence to any of the numbers we’ve seen so far is a futile exercise.

        If we are going to play that game, then, I’m waiting for a response as to ” Why have confidence in any set of numbers when the underlying methodology seems so god awful between runs?”

      • strawman November 29, 2015 at 17:06 #

        In the 1930,s eugenics in the USA was gaining popularity among the elite intellectuals. “Feeble minded,” “defectives” “orphans” etc. were put in institutions and were experimented on. These human beings were often sterilized. One sickening example was giving them tainted milk with tuberculosis bacteria. Another was the polio vaccine experiments. I would say the theory that autism is a spectrum dating back to the 1930’s should be suspect. But that is just my stawman opinion. Now, with more awareness and more diagnosis society seems to recognize the challenges faced by people with autism and with that comes respect for human rights. But, as history has shown, public acceptance could swing back again to the dark days of prejudice. People of science today take the higher road. Vaccines do not cause autism. Thimerosal did not cause autism. There is no cure and no need for a cure. Quackery does exist. There is no excuse for a parent to murder their child calling it mercy killing. These things I agree with. But saying that classic autism and aspergers is all under one umbrella, I can’t help but say No. Autism has become a popular over diagnosed condition. Even celebrities have jumped on the bandwagon. Somehow some have even lost their diagnosis. How can we even get correct percentages from such a confabulation. We need funding for those who have a life long disorder especially for those who can not live or work by themselves without help. On these issues, I confess that I take the low road.

      • Sullivan (Matt Carey) November 30, 2015 at 02:20 #

        ” Autism has become a popular over diagnosed condition. ”

        The data point the other way. We are still under diagnosing autism. Every time a CDC Autism prevalence estimate comes out, it includes a large fraction of autistics who were undiagnosed at the time of the study.

    • brian November 17, 2015 at 20:05 #

      Remember the good old days when the England “not a joke” study on adults found a 1% prevalence? …What a flawed study, for every person with autism they identified, they missed *at least* 1.5 adults with autism!

      Simon Baron-Cohen and his co-author recently explained that it is difficult to diagnose autism spectrum disorder in adults for practical, clinical, and developmental reasons (e.g., the acquisition of learned coping or camouflaging strategies.) In contrast to those who apparently believe that adults with ASD are rare or do not exist, and who seem to think that adults with ASD should act like children with ASD, Baron-Cohen notes that continued development and the acquisition of more-or-less effective coping strategies make it difficult to recognize many adults with ASD, who (the authors believe) are as prevalent in the adult population as children with ASD are prevalent in the pediatric population. [Lai MC, Baron-Cohen S. Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry. 2015 Nov;2(11):1013-27]

      • passionlessdrone November 18, 2015 at 01:55 #

        > Simon Baron-Cohen and his co-author recently explained that it is difficult to diagnose autism spectrum disorder in adults for practical, clinical, and developmental reasons (e.g., the acquisition of learned coping or camouflaging strategies.)

        That doesn’t sound like a pervasive developmental disability *at all* though; because from a practical standpoint, **they have adapted**. Childhood is where you learn to be social. Childhood is where you brain develops what it needs to survive in adulthood. The literature in regard to early learning and future cognitive development and success is unambiguous; childhood is where the action is.

        Another possibility on why it is ‘difficult to diagnose’ in adulthood is that *the people they were diagnosing did not suffer from pervasive learning disabilities in childhood*. (?) Perhaps this is why they were able to achieve ‘acquisition of learned coping’ strategies’; they were overcoming challenges that are magnitudes of order different than an altered pervasive childhood developmental trajectory.

        > Lancet Psychiatry. 2015

        Oh man, is that rich! For years, their study was the benchmark in the popular media and autismverse on why autism rates were static, after all, they *totally found* the same prevalence between adults and kids. The data was sound! There was a tight correlation between adults and children! There was alignment between age bands in adults! This was the evidence we’d all been waiting for to tell us that autism rates were stable, and it was unassailable; after all, it was a total population study with targeted followup clinical diagnosis! It was the gold standard!

        But now, suddenly oh, our total population study of blanketing people with ‘very useful’ ASQ tests wasn’t so great after all. What a crazy coincidence! I, for one, am shocked. I’m sure that pretty soon they’ll have a build of the ASQ that will come up with a way to find 2.5% of adults with ‘autism’, so that’s a pretty big relief!

      • Shauna Gordon (@gordondev) November 18, 2015 at 16:45 #

        I’m sorry, Drone, but your assertions show a fundamental lack of understanding of what it’s like to live as an Autistic person.

        The difference between a neurotypical person learning social skills and an Autistic person learning social skills is that the NT person integrates it to the point that it’s automatic. They never have to think about it, they never have to put effort into it. It comes naturally, and it’s learned without specific teaching. The Autistic person, however, never gets it that integrated. There is always mental overhead, because it’s always at least partially conscious behavior. Frankly, it’s exhausting. The *behaviors* can be learned, but it takes either explicit teaching or years of hard lessons from trial and error, and it never comes completely naturally, and the underlying understanding of why things are the way they are never really happens.

        Having a pervasive developmental disability does not mean we don’t ever learn anything (it also doesn’t mean that we’re intellectually impaired). We still learn, but certain things aren’t learned as easily or at all. We may learn to compensate for those parts we can’t do, but it ultimately disables us in a society that’s not built for us.

        And we may be successful at it for a while, but it wears on us, and we end up burning out. Maintaining employment becomes more difficult, cognitive function seems to actually decline (this is actually a discussion on aspiescentral right now, and many middle aged people are finding that their Autistic traits are amplifying. Increased sensory sensitivity, decreased cognitive functions. The lack of social supports for adults — particularly older adults — on the spectrum means that a great many of us suffer in silence and go unnoticed by “Autism parents” and other groups, who seem convinced that Autism is only a childhood disorder (sorry, but we all grow up eventually). That’s the cost of passing for us. The cost of learning to survive in a world that is not built for us. That’s what happens to those of us that don’t sit as far down the spectrum as your son, and so have to act like we’re NT, because otherwise, we’re treated as just “lazy slackers,” since our disabilities are more subtle than those who are completely non-verbal or are completely overwhelmed by the sensory input of the world.

        And you don’t think that, just because I’m not “as Autistic” as your child that I don’t need any supports, or that I’m not “actually Autistic” or that it doesn’t impair my ability to be independent? I’ll tell you right now, I’ve lost several jobs due to being Autistic, and the sensory issues I have force me to be ultra picky about the environments in which I work. I’ve had meltdowns at work. I’ve had issues where I didn’t understand something that was obvious to my NT boss, and attempts to get more information and to explain that and to get more information was met with “you’re smart, you can figure it out if you just try.” That one not only cost me the job (because I was expected to “fix” it, but had no idea what “it” was or what was wrong with it), but caused me so much anxiety that I had to go to weekly therapy for the next six months. My auditory processing and thought-to-speech “translation” delays (as well as the need for processing time to come up with proper responses to concerns brought to me) greatly impair my ability to advocate/stand up for myself in the workplace, even as a “standard” employee (especially under stress, when the delays are even worse), which has jeopardized my job on several occasions.

        My only saving grace for being able to continue to get work is the fact that interviews are scripted enough that I can pull them off, and that it’s pretty much expected to move on every couple of years in my industry.

        http://www.judyendow.com/autism-and-aging/sucking-it-up-to-pass-as-non-autistic/
        http://musingsofanaspie.com/2013/10/24/the-myth-of-passing/

      • Julian Frost November 19, 2015 at 05:48 #

        Shauna Gordon nailed it, PassionlessDrone.

        your assertions show a fundamental lack of understanding of what it’s like to live as an Autistic person.

        The rest of her comment is also bang on, particularly about autistics learning social skills and how exhausting it can be. I comment from personal experience.
        PassionlessDrone, you have a LOT to learn.

      • Roger Kulp November 19, 2015 at 17:06 #

        Simon Baron-Cohen and his co-author recently explained that it is difficult to diagnose autism spectrum disorder in adults for practical, clinical, and developmental reasons (e.g., the acquisition of learned coping or camouflaging strategies.) In contrast to those who apparently believe that adults with ASD are rare or do not exist, and who seem to think that adults with ASD should act like children with ASD.

        I take it this was written about adults who were higher functioning,or had no serious comorbidities besides autism?This is a big point here.There are real exceptions to this.My sister and I were both diagnosed with autism as children.In both cases,the diagnoses came out of psychiatric evaluations,because of behaviors exhibited in elementary school.Neither of us were able to learn any of these “coping or camouflaging strategies”,probably because our levels of impairment were too great to begin with.I would argue that there are those who are too disabled to learn such strategies.

        My sister and I were both rediagnosed with autism in our forties.Our diagnoses were pretty much the same as they were when we were children.No real changes at all.We needed to get rediagnosed in order to have access to specialized services and health care.My sister also has gotten in on a specialized job finding program,just for people on the spectrum.She has had all of the typical problems autistics have,finding,and keeping work.

        We have very different types of autism.My sister has a much higher functioning autism diagnosis than I do,but she has other psychiatric comorbidities.As a child she was diagnosed both autism and bipolar disorder.When rediagnosed,she was found to have mixed bipolar and Disruptive Mood Dysregulation Disorder as well as autism.She was rediagnosed after a psychiatric hospitalization,not her first one either,after one of her many suicide attempts earlier this year.

        I have a very different form of autism.I was verbal,but low functioning,with all sorts of learning disabilities,developmental delays,severe behavioral problems like head banging and wandering,and many serious medical problems.I later learned my head banging and wandering were due to treatable seizures,BTW.Since my diagnosis was made as a child,many of my problems had been brought under the umbrella of Nonverbal Learning Disorder,so I got a diagnosis of this as well as a rediagnosis of autism.We were both rediagnosed at the same hospital,a few years apart.We were both given pretty much the same evaluations the hospital gives older children.Long evaluations over a two day period.

  2. ~ Liz ~ November 17, 2015 at 19:23 #

    Interesting article, Dr. Carey. Thanks.

    I’m curious how much impact the AAP autism screening guidelines have. Since 2008 it’s been two red flags noticed by two people (doctor, teacher, or parent) are sufficient for a referral to a specialist. How many interpret that as “Did a doctor or health professional ever tell you that [child’s name] had autism…” A referral is not necessarily a Dx

    It makes me wonder if fine-tuning the language a little further might get rid of false positives and reconcile the disparity between these parent surveys and medical/education records.

  3. strawman November 19, 2015 at 15:02 #

    Shanna Gordon, thank you for sharing what it is like to have Autism as an adult. I know it is hard to live your life trying to pretend to feel nt. But, what is nt ? Social anxiety, bullies in the workplace, feeling like a misfit, criticism, saying the wrong things, mute shyness, crying at work and other problems need to be dealt with in order to hold on to a job. You mentioned therapy so there is help for you out there. Remember that you are part of society. Most people I believe struggle to fit in and for some it is much harder than others. We all need to feel accepted. If you think that a non verbal person with autism doesn’t understand rejection than you are mistaken. Sadly, a few yeas ago he was swinging at the playground not bothering anybody when an nt child told another kid, “you don’t want to sit next to that crazy kid.” He can understand the spoken word. Another time he was so happy at a swim meet that he ate pizza and ran around the sidelines while the kids were playing basketball. He wanted to join them but didn’t know how. He is 18 yrs old now and holds his head up high when he walks. There is a certain dignity about him. Concentrate on your good qualities and the gifts you were born with. Passionless Drone does understand autism all too well. He knows that the rate of autism doesn’t mean much because numbers can be manipulated or skewed. Autism is not a contest. Help should be accessible to anyone who needs it.

    • Shauna Gordon (@gordondev) November 19, 2015 at 17:27 #

      I am one of the more fortunate half of those with ASD that can remain employed and generally be independent. I’m also one that is more able to seek out the help I need when I need it. Not everyone is so fortunate, and unfortunately, at least as often as not, Autistic adults are left to their own devices with no guidance whatsoever. That alone is an overwhelming proposition for such people. It’s a catch-22, because without the supports they need, they can’t be employed, but (at least here in the US), they need employment to afford insurance to get the supports they need.

      I also got lucky with finding a place that diagnoses adults, though I still had to trace it through several places that only diagnosed children. Many people don’t even have access to that. Then, there are the issues that the medical industry doesn’t even really *know* about, like what happens to an Autistic as they reach the later stages of life. Search anything about Autism regression and all you get are the things about young children suddenly regressing. As far as the medical industry is concerned, adult regression is a myth (if they’ve even heard of it), even though it’s well-documented among Autistics themselves, who have experienced it first hand.

      I don’t know if you were actually addressing me when you stated “If you think that a non-verbal person with Autism doesn’t understand rejection than you are mistaken,” but if you were, I said nothing of the sort and am a staunch advocate of alternative forms of communication so that those who are non-verbal (for any reason) can communicate and people can see that being non-verbal does not mean being intellectually impaired. It’s astounding how many parents think that just because their child can’t talk, they can’t understand what’s being said around them. So I don’t really know where that comment came from.

      I agree that Autism isn’t a contest, but comments such as “if you’ve adapted, then you didn’t *really* have a PDD to begin with,” undermine all of us who are on the spectrum and have developed coping mechanisms and completely ignores the struggles that we still have. This is on par with the other comments we also hear. Things like, “you show empathy, or you look me in the eye, so you can’t possibly be Autistic!” These are things we hear *all the time* and they’re used to invalidate us and our self-advocacy at nearly every turn.

      I appreciate your encouragement. I don’t actually focus on the negatives on a typical day-to-day basis. I’ve developed coping mechanisms to minimize their impact (working remotely is one such mechanism, since it forces primarily text communication and allows me to disconnect from people when I need to) and allow me to focus on the good stuff. Unfortunately, trying to communicate what it’s like to be Autistic when I can pass, and the struggles that I still deal with, requires bringing into focus the negatives at least sometimes, because in these situations, it appears from the outside that I have *no* issues that uniquely stem from Autism (as opposed to run-of-the-mill issues like what you mentioned), even though that’s not actually the case. No, this isn’t me focusing on the negatives. Rather, it’s removing the mask and rose-colored glasses to illustrate the underlying struggles that still go on.

      • strawman November 19, 2015 at 18:41 #

        Shanna, I don’t know why I mentioned about my non verbal young man. Maybe I just feel proud of him. Of course for all intents and purposes he is intellectually disabled but since he has spent most of his life living in his own little world, I think he is rather smart with an amazing memory as seen when he looks things up on the computer. I understand what you are saying about struggling and trying to pretend to be someone you feel you are not. You have a diagnosis now and prospective employers should be accepting of that. It is good that you have no issues with autism itself. Where does that “having no empathy” come from? Simon Baron Cohen?

  4. Inconvenient Truth November 21, 2015 at 16:07 #

    You only have to read the first 4 words of the Introduction to understand that the authors seek to distance themselves from the inability to find CAUSES of Autism: “Developmental disabilities are heterogeneous…” Although true, this does not move science further because we could also say that people are heterogeneous and that every second of our life is heterogeneous!

    If every developmental disability in every person is heterogeneous (different), it would be presumptuous to expect the experts to ever find a cure. In summary, this study will only explain the problem and not seek to provide ANY insight into the causes of developmental disabilities because that would, of course, be IMPOSSIBLE! This seems to be a common theme from CDC published research on development disabilities. http://www.toxicshots.com

    • Chris November 22, 2015 at 03:54 #

      Some causes of autism are known. One is congenital rubella syndrome. The MMR vaccine prevents rubella, so it prevents that type of autism (along lots of other things that happen to babies when their mothers get rubella, oh and it also prevents sterility and deafness from mumps, and encephalitis from measles… which can cause deafness, blindness, paralysis, permanent neuro damage and death).

  5. strawman November 30, 2015 at 20:03 #

    When I was young I got a free volume of an encyclopedia that was given away at a supermarket. Of course under the letter A was Autism. This was a rare disorder ( 1 in 10,000.) It was mysterious where kids would not speak and would self harm. I remember thinking,” What happens to them when they grow up?” I am still thinking……

  6. usethebrainsgodgiveyou December 2, 2015 at 12:42 #

    One day, Intellectual Disability is going to totally disappear from autism numbers. Although it was insignificant, to go from 23 something to 16.7%of the autism numbers. It doesn’t take a village idiot to figure it out. ID in autism is disappearing.

    • Sullivan (Matt Carey) December 2, 2015 at 18:30 #

      Perhaps you might reconsider whether the term “village idiot” is appropriate. Here or elsewhere.

      That’s the nice version.

      It isn’t appropriate. It’s insulting and stigmatizing to those with intellectual disability.

      And you are wrong. Intellectual disability is not “disappearing”. We are adding a lot more individuals without ID so the fraction goes down.

      ID prevalence in the general population is about 1%. So, tell me that 16%, 23%, 40% (closer to the recent CDC prevalence estimate) is a “disappearing” ammount.

      • usethebrainsgodgiveyou December 2, 2015 at 19:13 #

        I know it’s wrong. Someone came from here to my blog and it was from a post on LBRB where I called myself that a long time ago. I’m just paranoid from a recent adventure at Skeptical Raptor. I’m still a mess and I can’t take this anymore. I ended up getting totally fed up because there is a certain…gamesmanship among the provaccine crowd and they play rough. I’ve never seen them as vindictive before, though. You don’t allow that here. There is cross communication here.

        You may or may not believe me, but part of my reasoning was perhaps to get other parents to see that it was not the vaccine in and of itself that caused their child’s reaction. That the vaccine didn’t “cause” autism.I know they read those blogs…I don’t have the guts to go on an antivaccine blog and test my ideas.

        I apologize. If I could edit it, I would. I am losing my emotional liability, and my family is worried for me. Getting old is not for the faint of heart. Thank you for your kindness through the years. It
        means a lot. I’ve never been afraid to be here.

        Please don’t say anything back that has anything to do with vaccines. I need a long vacation from that.

      • usethebrainsgodgiveyou December 2, 2015 at 19:52 #

        In truth, I need to get together with the people who feel the same way. I feel like I’m going it alone, and it’s not good. I’ll go look for them. This is wearing me out.

        My son graduates from Tech college on Thursday….he will be a machinist, and he already has a job making good money. He is buying his first car this weekend. It is a 1973 Lincoln Continental. The guys who work at the train museum, yes, you heard that right….I think they fixed it up for him. He’s been going there on weekends since he was 15 years old. They are all brilliant in their own way, one works on Rolls Royce’s and is the English version of John Elder Robison. It’s a funny and amazing coincidence. Ben is buying the car from him. I am so lucky for the people IRL who have made such a difference, and for having such a great son! That’s all. I just wanted to leave you with some good news. I wish good things for you and your child every minute of every day. Nice to have known you.

      • strawman December 2, 2015 at 23:34 #

        If autism remained a rare disorder( as it seemed to be back in the day) then wouldn’t there be less awareness, less social programs, less acceptance, or less opportunities. Would there be any funding for education or job programs? Who would contribute or care? It helps to be on a spectrum where many share the same disabilities as well as abilities. Lbrb really made me think about this. I hope I am on the right track.

  7. Roger Kulp December 4, 2015 at 13:47 #

    Here is the PubMed entry for the 1 in 45 survey.
    http://www.ncbi.nlm.nih.gov/pubmed/26632847

    I had a lengthy response to Strawman upthread,that I posted on the 30th.I never saw it.I don’t think it’s anything personal,but I do think there may be something wrong with your site,where lots of comments might get caught somewhere and are never published.

Trackbacks/Pingbacks

  1. So, you supposed champions of autistic minorities, why aren’t you commenting on the new autism prevalence report? | Left Brain Right Brain - November 17, 2015

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    […] 6b- leftbrainrightbrain.co.uk/2015/11/17/u-s-announces-2-autism-rate-again-and-its-dependent-on-a-change… […]

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