CDC conference call: 1% autism prevalence.

18 Dec

The CDC conference call was today. This call was about the new MMWR (Morbidity and Mortality Weekly Reports) that is due out. (The report is here, with an appendix here).

Dr. Catherine Rice, lead author was there. She gave the intro.

Report is released today. “Significant public health issue”. We need a coordinated and strong response to improve the lives of people with ASD.

2006–identified prevalence to be about 1% of 8 year olds. Representing about 8% of 8 year olds. 4.2 to 12.1 per 1000, average of 9.0 per 1000 (1 in 80 to 1 in 240, average on in 110)

The ADDM network collects data from multiple sites. All showed increases in identified ASD prevalence. The increases ranged from 27% to 95%, with an average of 57%

Identified ASD prevalence increased across all categories. Increases 55% for White, 90% for Hispanic (missed African American)

The autism prevalence is 4-5 times higher for boys. Prevalence numbers are 1 in 70 boys, 1 in 315 girls (average). The increases were 60% for boys, 48% for girls.

There were between 13-35% of the children studied who had a report of regression or loss of skills by age 2.

For most children, concerns were noted in the records were noted before age 2, but average identification age is about 4.5 years of age.

No single factor explains increase. Better detection is a factor (girls, Hispanics, people without cognitive impairment were given as examples of improved detection). True increase can not be ruled out.

CDC has new studies (such as SEED) to look into causes of autism. CDC is also represented on the IACC.

Some of the increase is due to better record keeping. One question from WebMD was about a possible true increase. CDC responded about the various factors involved, but a true increase can not be ruled out.

Boston Globe: (1) why are there broad “incidence” rates across sites (2) what about this study in terms of vaccinations.

Rage is 4.2 to 12.1 per 1,000. 7 sites were much more closely grouped around 10 per 1,000 (1%). There is a variation in the types of records available. The CDC representative states the low numbers are likely a low estimate.

Since autism is a behaviorally diagnosed condition, there will be variation in prevalence by region.

This study is not designed to look at risk factors, including vaccine. The children in this study were born in 1998, so these children were vaccinated with thimerosal.

NY Times: Range of spectrum. How well does this study catch the more “mild” end of the spectrum like PDD-NOS and Aspergers.

This went by fast, but it sounded like the CDC said that autism and PDD-NOS were more represented than Asperger syndrome.

CDC: The researchers do not actually test the children, but work on a review of existing records.

Pediatric news: What is the take home message for pediatricians?

CDC: Since there was usually an indication of delay before the age of 2, but identification wasn’t made until (on average) 4.5, pediatricians should be proactive in referring children for further evaluation.

In response to one question on intellectual disability: there is an overlap between autism and intellectual disability. Old stats showed 75% of autistics had Intellectual disability. Now it is more like 41%. This points to the idea that either the nature of autism is changing or that identification methods are changing, catching more autistics without intellectual disability.

CNN question–how much did the average age of diagnosis change?

CDC: 5 months. Children were identified on average 5 months sooner in these data than in the previous study.

Note: I made significant updates to this post since it was first published.

28 Responses to “CDC conference call: 1% autism prevalence.”

  1. Laurentius Rex December 18, 2009 at 21:45 #

    Is no one ever going to get it right, incidence does not equal prevalence, indeed prevelance is essentially an asymptotic unknown one can only hypothesise about. It can’t be measured objectively, and what it is hypothesised to be in any one time period is going to shift proportionally to incidence.

    And these people are scientists? !!!!!!!!!!!!!!!!!!!!!

    What is the prevelance of squirells in a wood. I dunno, you count them and it gives you an incidence but if they are entering and leaving the wood all the time, you still only ever know the incidence, the number of times you see a uniquelly identifiable squirell you don’t know at any one time how many are actually in the wood.

    If you are set up to count greys and some scruffy looking reds appear, what do you do then?

    If a new species of squirell is identified or if the old one is renamed a tree rat, what do you do then?

    What do they do, they do not enlighten, they just sew discord.

    what are they for, the Centre for creating moral panic and folk devils?

    What do they do? what do they know?

    There statistics will be different next year, and different in a decade. What do they know?

  2. Stephanie Lynn Keil December 19, 2009 at 03:00 #

    I’ve made my decision: Autism needs to be cured.

  3. Sullivan December 19, 2009 at 03:12 #

    I’ve made my decision: Autism needs to be cured.

    OK. But there is no cure. What do we do in the meantime?

    Generations of parents have spent their lives looking for a cure. Fine. But, why not plan for what happens if there isn’t one?

  4. Stephanie Lynn Keil December 19, 2009 at 03:17 #

    “OK. But there is no cure. What do we do in the meantime?”

    “Recover” from autism as much as possible. Many AS/HFA people like to revel in their diagnosis for the sake of “autistic culture.” I want a cure so that I can live the life I want and so that I can help others in the most efficient way possible. I have always wanted to spend my life in India/Sri Lanka helping those that actually need it. At the moment my autism prevents me from this goal but I am in treatment to recover from it.

    Why do we need “Neurodiversity” or “autism culture?” There are millions of people who suffer so much everyday. Why not “recover” to help these people instead of the very small group of “autistic” people? What gives you the right to revel in your “diversity” when there are people who have no food, no shelter, who are being sexually abused, who are profoundly disabled and who don’t have the opportunity to revel in their “unique brain wiring?”

    Why don’t those with HFA/AS stop reveling in their specialness, get treatment and actually help people that truly need it?

    • Sullivan December 19, 2009 at 04:02 #

      Stephanie Lynn Keil,

      There is no recovery either. Show me a doctor that will guarantee a recovery in an autistic. There are none (or, if there are, they are lying).

      So, what are your plans?

      Why don’t those with HFA/AS stop reveling in their specialness, get treatment and actually help people that truly need it?

      You mean like work towards laws that limit restraint and seclusion? Working on updating the ADA? Things like that? Gee, I wonder if anyone is doing that–of course there is.

      Does this have anything to do with the CDC conference call, by the way?

  5. Sullivan December 19, 2009 at 03:19 #

    Stephanie Lynn Keil,

    I noticed that you edited your comment–I appreciate that (for others, it originally just read “autism needs to be cured”).

    Even as now written, some might claim, “why do you speak for all autistics?”

    That is the same complaint made against other autistics when they say they don’t want a cure.

  6. Stephanie Lynn Keil December 19, 2009 at 03:21 #

    I’m waiting for you to moderate my first comment made at 3:17:46

  7. Dedj December 19, 2009 at 04:16 #

    There’s one hell of a lot more than autism preventing most people from doing what they want.

    Performance skills
    Funding
    Opportunity
    Connections (or lack of)
    Experience (or lack of)
    Family duties
    Role responsibilities

    I would suggest to anyone who thinks their autism is the only thing preventing them from going to India on an aid mission that they are exceptionally lucky to not have to worry about all the other stuff that prevents other people from doing what they want with their life.

  8. Stephanie Lynn Keil December 19, 2009 at 04:20 #

    “Performance skills
    Funding
    Opportunity
    Connections (or lack of)
    Experience (or lack of)
    Family duties
    Role responsibilities”

    Obviously. Why do you think I’m not there? Aside from my disabilities.

  9. Dedj December 19, 2009 at 04:21 #

    “You mean like work towards laws that limit restraint and seclusion? Working on updating the ADA? Things like that?”

    Indeed. Many members of the ND movement – who are often accused of shiny aspie-ism – are involved in professional, clinical, vocational or educational service delivery.

    I do have to wonder where people like SLK and RK spend all their time if they think shiny aspie-ites are ‘doing nothing’.

    Perhaps they only have awareness of the blogosphere section of it? A bit like JC and HD do. If you hang around in places where you’re only likely to see one side of people, you’re pretty much only going to come out of it with one image.

  10. Stephanie Lynn Keil December 19, 2009 at 04:23 #

    “Does this have anything to do with the CDC conference call, by the way?”

    No, I’m just tired of the “logic” of Neurodiversity.

    And no, from what I have read the “Neurodiverse” promote an “autistic culture.”

    And it definitely took a LONG time for the Neurodiverse to actually come around and help the autistics being abused.

  11. Dedj December 19, 2009 at 04:25 #

    “Obviously.”

    Why are you blaming only your autism then?

    Shall I directly quote you or are you going to admit your inconsistancy openly? Are you even aware of being inconsistant?

    Can you rephrase that post so that it actually says what you intended?

    Thanks, see you tommorrow if I have time.

  12. Dedj December 19, 2009 at 04:31 #

    “No, I’m just tired of the “logic” of Neurodiversity.”

    From what we’ve read, it’s doubtful you even have accurate knowledge of what the ‘logic’ even is, even assuming there is such a singular thing.

    “And no, from what I have read the “Neurodiverse” promote an “autistic culture.””

    And? Thats part of the point.

    “And it definitely took a LONG time for the Neurodiverse to actually come around and help the autistics being abused.”

    Possibly, but it also took a long time – partly due to the very systems of abuse and disenfranchisment ‘ND’ people oppose – for ‘ND’ people to acquire the social and political power to do so.

    Had you the understanding of ND you purport to have, you would know this.

    When we compare this to curebie groups (not all curebies mind) who inadvertantly support the systems of abuse, the ND movement is light years ahead.

  13. Stephanie Lynn Keil December 19, 2009 at 04:33 #

    “Why are you blaming only your autism then?”

    I thought the fact that I was poor and socially incompetent was implied.

    “Shall I directly quote you or are you going to admit your inconsistancy openly? Are you even aware of being inconsistant?”

    Sorry, I assume that people already know these things about me.

    By the way, I’m poor because I have autism and cannot hold a job. I have no connections because I have no social skills. I don’t know how to go about the process because of “executive functioning.” So, my autism has a lot to do with it.

  14. Stephanie Lynn Keil December 19, 2009 at 04:36 #

    ““And no, from what I have read the “Neurodiverse” promote an “autistic culture.””

    What’s the point of having an “autistic culture?” What’s the point of allowing people to revel in their disability? Why not “recover” so that they can help people that truly need it?

    “Possibly, but it also took a long time – partly due to the very systems of abuse and disenfranchisment ‘ND’ people oppose – for ‘ND’ people to acquire the social and political power to do so.”

    I really think you are full of it.

  15. navi December 19, 2009 at 04:52 #

    and while everyone’s arguing, no one is doing research to find out what might help my son be able to type like you do, so that he can express his opinion like you do. So I’m stuck with trial and error. we’ve been working on ‘compliance tasks’ for over a year. Oh, and I support neurodiversity. stop accusing me of not trying to help my son, just because I accept him for who he is, and how he is, now. when you make the accusations against neurodiversity like that, you are making false accusations.

  16. Stephanie Lynn Keil December 19, 2009 at 05:01 #

    If I was capable of doing research I definitely would. Don’t make assumptions like that.

    I’m not accusing anyone of anything.

  17. David N. Brown December 19, 2009 at 09:07 #

    “Rage is 4.2 to 12.1 per 1,000”
    Should this be “range”?

    And my take on abuse: The problem is not the autistics. The problem is psychotics, sociopaths and low-grade opportunists who favor them as targets. As far as I’m concerned, something like “restraint and seclusion” SHOULD be used against these kinds of abusers (that, or just expel them all).

  18. andrew_w December 19, 2009 at 09:29 #

    @Stephanie Lynn Keil:

    A “cure” for autism (which I define as removing all autistic traits, both visible and invisible, from an individual) would not be something trivial like a pill. Some of the neurological atypicalities involved, such as atypical connectivity, would almost certainly not be changeable with anything short of highly destructive surgery. Also, many of the cognitive effects of autism, such as atypical sense of self, or increased compartmentalization, are integral to the individual. “Curing” autism would be the equivalent of reformatting a hard drive, and would more properly be described as a “brain transplant” rather than a “cure”. Now, lessening the impact of some of the deficits of autism might be possible to do nondestructively in some cases, but that is quite different from removing all traces of autism from a person, and should not (in my opinion) be called a “cure”.

  19. Laurentius Rex December 19, 2009 at 12:32 #

    If you don’t have a diagnosis you merely have to find something else to hang your ‘pain’ on if you are attributionaly that way inclined.

    I was aware of being socially disadvantaged well before my diagnosis, but then I was a carer, and having been unavailable for employment ruined my future chances somewhat.

    However what I learnt was that Disability Culture exists. My mum severely impaired by any account was able, after she had been forced to give up her work because of disability to make a significant impact on the disability environment both locally and nationally, being part of a movement that led to real changes over time.

    This is what Disability Culture has achieved and this is why Autistic culture is necessary. It gives us something positive whilst we are awaiting a “cure” if you like, or in my case awaiting those radical changes in society which I believe will be of benefit to a great many other communities besides Autism.

    In fact Autistic culture like any other culture has a lot to give outside of the culture never mind within it.

    Sure my life can be crap sometimes, especially at this time of year as I see others indulging in the socially oriented festivities at Christmas. But that isn’t the point, I have a mission, and I am earnestly working on it all the time.

  20. Visitor December 19, 2009 at 20:06 #

    I was interested by the current results from Google News, particularly ranked by date.

    Check “autism” Big story on new incidence figures.

    Then separately check “MMR”. Nothing, but UK confidence restored.

    The incidence coverage either entirely ignores the vaccine, or makes passing reference to the debunking.

    It’s quite clear that the US isn’t going to see what they saw in the UK.

    Ain’t gonna happen.

  21. Mike Stanton December 19, 2009 at 23:49 #

    Larry is right. I am not autistic but I am pro Neurodiversity because it helps me to help the children I teach in a more effective way. The children I teach have severe learning difficulties. They all need a specialized environment in which to thrive. They all need understanding from the world at large. They are not all autistic.

    It is not the case that Neurodiversity is OK for high functioning autism and Asperger’s Syndrome but low functioning people with autistic disorder need a cure. From my point of view Neurodiversity means valuing the whole person and identifying their strengths as well as their difficulties. It does not mean ignoring the problems or painting a too rosy picture of the autistic condition.

    For autistic people I imagine, for I cannot know for certain, that Neurodiversity entails coming together with other autistic people in order to strengthen yourself in your personal and political life. Culture describes what happens when people come together on a shared basis. This could be aesthetic or scientific or ideological etc. Autistic culture is what happens when people come together on the basis of their autism.

    It does not preclude them belonging to other cultures at the same time. Nor does it preclude differences within autistic culture. We need to embrace pluralism as a necessary adjunct to Neurodiversity.

  22. Oriel December 20, 2009 at 13:16 #

    Clearly there were some who thought it possible to cure autism and that the ‘cure’ would be found at Thoughtful House.

    Medical Interventions for Autism Annual Tax Returns 2004

    http://www.casewatch.org/990/index.shtml record how $735,000.00 was donated to “Thoughtful House-funds startup costs of organization in Austin TX to conduct scientific research, clinical services and education in order to cure individuals with autism”.

    It’s worthy of note that the President of MIA at that time was Dr Andrew Wakefield who went on to be Chief Executive Officer at Thoughtful House.

    There’s nothing more to be said!

  23. Dedj December 24, 2009 at 00:20 #

    “What’s the point of having an “autistic culture?””

    Because there are people out there who are autistic, who like to share what it’s like to be autistic with other autistic people, and who like to talk (or type) about experiences of being autistic.

    An easy parallel is deaf culture, or blind culture, wheelie culture or crip culture. Despite having a (now) blind sister (with blind husband) I thought condition related identity was crap too. Then I actually spent some time looking into it. You are way behind the times.

    Without realising it, you’re actually contributing to autistic culture by your actions of speaking about – and putting value to – your experiences as an autistic person.

    “I really think you are full of it.”

    Not sure why you think this, as you failed to explain yourself again. I find it incredible that you seem to believe disability advocates have always been given a platform, and that you seem to think the long term cultural shifts towards self-determinism and inclusion (as well as the shift towards autistic friendly mediums) have had nothing to do with the increase in autism advocacy.

    If you’re going to start resorting to insults rather than reasons, at least make sure they make your opponent – and not youself – be the one that looks bad.

    I apologise for the tone of my earlier posts, but not the content, if you honestly only have autism preventing you from reaching your particular life goal, then you are certainly from a more privileged background than most autistic people I know.

  24. maggieaustria February 24, 2010 at 08:48 #

    You tube: search under autism self injury> wonder if this mom thinks it’s just wunderbar to have an autistic child who punches gthe hell outta his head and she has to fight all time for support and help to manage him

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - CDC conference call: 1% autism prevalence. « Left Brain/Right Brain -- Topsy.com - December 18, 2009

    […] This post was mentioned on Twitter by autism_hub, Autism Hub. Autism Hub said: New post: CDC conference call: 1% autism prevalence. http://bit.ly/8z8BZZ […]

  2. Conference Call Review - Autism Blog - CDC conference call: 1% autism prevalence. « Left … - December 18, 2009

    […] Read this article: Autism Blog – CDC conference call: 1% autism prevalence. « Left … […]

  3. CDC report 1 in 110 kids are identified autistic | MNH Kids Camp.com – Ideas & Advice on Child Autism - December 19, 2009

    […] This was published in an MMWR came out today, with the new CDC prevalence estimate of 1 in 110. I made some notes on the conference call, but I thought it worthwhile to make a few comments on the document […]

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