Autism Speaks refuses to talk: 1.5 million autistic people? How do you figure?

29 Responses to “Autism Speaks refuses to talk: 1.5 million autistic people? How do you figure?”

1. Maddy July 12, 2008 at 01:05 #

   So that’s a ‘watch this space’ posting?
   I hope.
   Cheers
2. Ms. Clark July 12, 2008 at 01:27 #

   Maddy,

   I think it’s more like a “if this bugs you as much as it does me, would you contact AS and see if you can get an answer?” posting,

   and sort of a “don’t hold your breath – in my opinion these people are mainly interested in marketing themselves,” posting. 🙂
3. Joseph July 12, 2008 at 02:15 #

   They screwed up.

   Either way, it’s an ambiguous thing to estimate. If you want me to tell you how many autistics live in the US, I’d say 3 million. How many below the age of 18? About 780,000.

   It gets trickier if you ask how many are diagnosed. That might be in the order of 500,000 for all ages (meaning that the vast majority of autistics don’t have a diagnosis of autism and are probably unaware of autism altogether). How many classified as autistic in special education? I believe that’s 250,000.
4. Justthisguy July 12, 2008 at 05:02 #

   Well, yeah, to get their numbers up, as we know, they count people like me who are mostly normal, but somewhat strange, and then say that I’m not really autistic because I can sorta get along in society.

   Reminds me of shell game, or bait-and-switch, or something.
5. dkmnow July 12, 2008 at 05:36 #

   Justthisguy,

   Yup, “bait-and-switch” is what screamingly leaped to mind for me:
   http://www.autismvox.com/a-sad-story-on-fathers-day-the-wright-family-feud/#comment-170264
   (pleez to overlook my customary angst and hyperbole! Or was it just sarcasm? As an Autistic, I wouldn’t know. cough,cough)

   Ms. C.,

   This is sweet!

   I’m considering (though a bit idly at the moment) sending them a snail-mail form with an SASE — to make it just as falling-out-of-your-chair easy as it can possibly be. A simple fill-in-the-blank quiz breakdown of numbers for age groups, specific DSM designations, dx’d vs. undx’d, and so forth. They need only jot down some figures, perhaps cite a few sources if the spirit moves them, then pop it in the provided envelope and drop it in the return mail.

   T’would be so easy to formulate, so self-explanatory and straightforward, and presumably, so easy for any (competent) expert to answer and return. And if the first mailing somehow gets “lost,” there’s always registered mail …

   😉
6. Do'C July 12, 2008 at 08:21 #

   they should be able to give basic facts about the community they are claiming to serve when they are out pounding on people’s emotions to get them to fork over cash to support Autism Speaks

   they should be able to give basic facts about the community they are claiming to serve when they are out pounding on people’s emotions to get them to spork over cash to support Autism Speaks

   There, fixed it.
7. Ms. Clark July 12, 2008 at 08:49 #

   It’s as if everyone was going to buy the 1-in-150-children-are-autistic notion without asking what that means. The assumption (thanks to the way they have presented autism) is that all 1 in 150 are a burden on society and some kind of hideous inhuman monsters who destroy their families by their very existence. The truth that there might be, as Joseph points out 1% of the population who could qualify for an ASD dx at around age 6 or 7 (these would have also qualified before age 3). I mean this is how to do an accurate count, to get kids who didn’t “grow out of” autism by age 6 or 7 possibly because they weren’t autistic to begin with. And maybe if we look around we could find close to 1% of all adults now fit on the autism spectrum pretty well, they are more than “merely quirky,” but they have “stereotypical behaviors” that they might be able to hide most of the time, they have odd ways of dealing with noise and light and they don’t like crowds or can’t maintain appropriate employment because they don’t fit in with “teams”.

   Autistic adults may be in mental institutions with schizophrenia diagnoses or they may have died in “state schools” years ago, so the number may be lower than what we should have.

   At any rate, Autism Speaks seems to have decided that they like the graphic appearance of the numerals found in “1 in 150” and “1.5 million” and they are sticking with them and feel no need for those numbers to be particularly accurate, so long as they “work”.

   For people who are promoting an “epidemic” or the “fastest growing childhood disorder” or whatever they call autism this week, I would think they’d want to keep a running tab on how many autistic kids there are… like McDonald’s used to with the number of hamburgers served. They could keep that running tab going on their homepage. The “fighting autism” folks (now allied with Thoughtful [?] House) have an “autism clock” that counts a new ASD kid every few seconds shows less that a quarter million total, if I recall, and it’s supposed to be just children. Their number ought to be double that at least. However it’s based on the IDEA data that shows that there aren’t enough kids getting services under the ASD label in the US, or that there are a lot of ASD kids out there who don’t need any special ed help at all. But the “Fighting Autism” people have their “autism clock” sitting there trying to be all scary.

   Who knows what they’d do if the CDC changed their estimate from 1 in 150 to 1 in 100. They’d have to get a lot of new little do-dad’s printed.

   I was at a presentation here where some brand shiny new Autism Speaks (TM) representative (moms) showed up, they were like brand new Tupperware ladies and they brought their brand new Autism Speaks (TM) goodies with them, including little cellophane wrapped mint candies with stickers on them that read, “1 in 150 people in the US has autism,” or words to that effect.

   I should point out that the blogger from “Autism News Beat” emailed Alison Singer about 2 years ago and asked her basically the same questions about their statistics. She never answered him, either. So this isn’t their allergy to answering questions from women and it isn’t new.

   dkmnow, maybe if you come up with a form letter you could post it to your blog (or here) and people could copy it and send their own snail mail letter or fax to Autism Speaks.
8. Ms. Clark July 12, 2008 at 08:52 #

   Do’C,

   Ah, yes, thank you. “Spork” is the word I was going for.
   http://autismsporks.blogspot.com/
9. Regan July 12, 2008 at 12:17 #

   This website gives an estimate of 1-1.5 million and what they base it on,
   What is Autism: Facts and Statistics
   Autism Society of America

   I can’t vouch that that’s the same info being used by Autism Speaks, and even if so, it doesn’t speak to not replying to the original inquiry.
10. Harold L Doherty July 12, 2008 at 12:54 #

    Must be a slow day in the Neurodiversity “Movement” when you and Ms Dawson have to pick a fight with AS over the well known CDC 1 in 150 estimate. Do you have nothing more important to do?
11. Lisa July 12, 2008 at 13:33 #

    I’m personally looking for ANY information about the number of people diagnosed with Asperger syndrome/High functioning autism versus those diagnosed with “classic” autism. Of course, there are no such figures.

    As a result, we have NO way to know –

    a. whether there is a rise in the number of people with autism (that is, is it the diagnostic criteria or an actual rise in occurences of autism);

    b. whether researchers who gather a group of “autistic” children are comparing people with similar symptoms or people with completely different symptoms;

    c. whether treatments work better for one group that for another.

    Frustrating!!!!

    Lisa (autism.about.com)
12. Kev July 12, 2008 at 17:57 #

    Harold – must be a slow day in New Brunswick when all you can do is troll the comment section of a post you claim is unimportant.

    Don’t you have anything less immature to do?
13. Ms. Clark July 12, 2008 at 20:45 #

    Lisa,

    I am happy that you are interested in hard facts. I thought you were only interested in making people feel accepted and “understood”.

    Well, I don’t feel “understood” when I read what you write on about.com Lisa Jo Rudy. I feel excluded, degraded and diminished when you accept in tiniest way the idea that there’s been an “epidemic” of “vaccine” or “toxin” caused autism.

    If you accept the “epidemic” nonsense then you mentally erase the lives of perhaps over one million ASD adults whose needs are going unaddressed because of people like you who constantly focus on autism being some relatively “new” and that it’s a “disorder or children” that might be “caused by a synergy of toxic stew stuff and bad doctor stuff” (Those are not direct quotes of yours Lisa Jo Rudy, they are more or less the kind of thing I expect to find on your site but with, “scare quotes” marking them.)

    There are no hard numbers of how man Asperger’s people there are. There are world class experts in autism who will tell you that if you apply the criteria for “Asperger’s” exactly as it is found in the DSM, there are no Asperger’s people, there are only PDD,nos and Autistic people, some of whom have been placed in the “Asperger’s” category for various and sundry reasons.

    I believe that in the next incarnation of the DSM we will see no Asperger’s disorder at all, just autistic disorder and perhaps PDD,nos.

    I have an “Asperger’s” diagnosis because this is the label that is favored for adults who can do things like drive a car or have children or maintain employment for some period of time (be it scrubbing toilets or writing computer programs). Many perhaps nearly all “Asperger’s” adults were “classic Kanner autistic disorder” children. And many parents of ASD kids were also “classic” Kanner autistics as children.

    Keep in mind, that “Kanner” autism excluded mental retardation.

    So “Kanner” autism is more or less “high functioning autism” so that kids like Mr. Doherty’s son 50 years ago, might have been called “retarded.” Period. And 30 years ago he probably would have been called “mentally retarded with autistic behaviors”. In fact there are those who would give this label to papa Doherty even now. 🙂

    There ARE studies that have been done, and I imagine there are several ongoing that are trying to split up groups of toddlers and pre-schoolers with ASD dx’s or putative ASD dx’s into subgroups according to which therapies (ABA, PECS, Floortime (TM)…) they are most likely to respond.

    You’re a big girl, Lisa, I imagine you can figure out how to contact the experts and find what those studies are. If you get stuck you can ask me. I’ll give you a hint, one of the researchers doing this was a speaker at the MIND Institute this year.

    Another speaker at the MIND Institute, Deborah Fein said that she has a grad student working on research for her dissertation in which the preliminary results show that the more therapy a kid gets the poorer his or her results. Of course, I predicted this on my blog over a year ago, but no one reads my blog.
    http://autismdiva.blogspot.com/2007/03/down-time-or-what-red-queen-needs.html

    Dr. Fein thought that maybe there was some reason that giving kids more and more therapy hours made them less likely to “recover”… I let you watch the video of her presentation on the MIND’s website and find out what she said. Cuz, after all you are being paid by the NYT to write, and the NYT ain’t paying me anything, strangely enough. 🙂
14. Harold L Doherty July 12, 2008 at 21:03 #

    Kev,

    Comment section? Your breathtakingly important blog entry about Autism Speaks showed up near the top of a Google Blog search key word “autism”.

    You should try to focus on helping those autistic people who actually need and want help and cease with the petty internet posturing.
15. Michelle Dawson July 12, 2008 at 21:04 #

    Mr Doherty wrote, in his signature way, that I am “picking a fight” with Autism Speaks over the 1 in 150 prevalence figure.

    Anyone who reads what I wrote about this, or reads Ms Clark’s post, even in a very superficial way, would notice right away that the concern being raised is Autism Speaks’ 1.5 million figure.

    Indeed, Ms Clark’s post indicates very clearly that the 1 in 150 figure is not the concern here at all.

    When I blogged about the Autism Speaks 1.5 million (link is in Ms Clark’s post), Mr Doherty showed up with some grossly off-topic comments.

    As I’ve noticed numerous times, Mr Doherty does not read the easily available work of those he berates. Or he does read this work, but chooses deliberately to misrepresent it. Either way, this does not speak well for his standards.
16. Ms. Clark July 12, 2008 at 21:18 #

    Right, see the last part of the title of this blog entry is not, “1 in 150? How do you figure?” It is “1.5 million autistic people. How do you figure?” We all know where they get the 1 in 150. It’s a good number, but perhaps an underestimate.

    If AS is saying that the actual total of autistic people in the US is between 1 and 1.5 million then they are going with a higher number that is half again as high as the lower number.

    That’s fine. But then maybe they ought to be going with that number from the UK that showed that maybe 1% of all 7 or 8 year old kids is on the spectrum. Maybe they ought to be going with a higher but logical estimate, that there could be 3 million ASD people in the US.

    Of course, most of that 3 million would already be adult and many would have been adults for quite a while. That group would include me and my ASD kid. We are not the sort that Autism Speaks wants to “help,” though.
17. Michelle Dawson July 12, 2008 at 21:27 #

    Mr Doherty wrote, about Kev’s “breathtakingly important blog entry about Autism Speaks.”

    Kev didn’t write that blog entry–something Mr Doherty would notice if he read it.

    Because Mr Doherty hasn’t read what I’ve written about the Autism Speaks 1.5 million and why this might matter (there’s also a quote in Ms Clark’s post above, which Mr Doherty also hasn’t read), here’s a bit from my blog post (this one http://autismcrisis.blogspot.com/2008/06/epidemiology-of-autism-speaks.html ) about why, while this does not matter to Mr Doherty, this does matter to autistics :

    ——————————————–

    And a difference of 500,000 between the figure promoted by Autism Speaks and the figure consistent with the existing scientific literature is hardly trivial. What major, high-profile disability organization would so persistently deny the existence of hundreds of thousands of the disabled people it claims to represent? This can only result in disabled people being unable to obtain services, unable to be recognized for their contributions, unable to have a voice in their own future, etc.

    But this is what autism advocates do. One of the near universals of autism advocacy is the promotion of the autism “epidemic,” and the rejection of the scientific position that there’s been a high stable rate of autism. The main effect of this has been the denial of the existence of older autistics. In Canada, this denial of autistic lives by autism advocates has been extreme. [see http://autismcrisis.blogspot.com/2006/10/strategy-to-deny-autistic-lives.html ]

    Another universal of autism advocacy is a gross disregard for accuracy and ethics in reporting what is known about autism. Autism Speaks is telling the world–including governments–that when it comes to autism, you don’t need to bother with the facts. You don’t need to check your basic arithmetic, much less take the trouble to look up primary sources. Autism Speaks’ widely disseminated 1.5 million figure, and its casual denial of half a million autistic lives, is just one example of the standards of science and ethics that leading autism advocates apply to autistics.

    ———————————————
18. Ms. Clark July 12, 2008 at 22:21 #

    Michelle,

    While I was waiting for Mr. Rosanoff to respond to my email saying that he could call me on Thursday I speculated on why he wanted to talk on the phone. Someone who has had experience with Autism Speaks told me that he thought that the point was to somehow charm me into forgetting what the question was, or something. Or perhaps to sort of bury the problem in words. Since it’s not legal to record conversations on the phone I thought maybe I could just audio record MY side of the conversation which I speculated might sound like this:

    “So you said, first you took the 2000 US census numbers, you divided them by 150 and then you ran them through a Bonferroni correction whatsit … is that a term from statistics: “Bonferroni correction whatsit”? Hmmm. And then a you applied a root-mean-square error of approximation index? But not before you … what was that about a goodness of fit index?”
19. Anne July 12, 2008 at 22:43 #

    “I’m personally looking for ANY information about the number of people diagnosed with Asperger syndrome/High functioning autism versus those diagnosed with “classic” autism. Of course, there are no such figures.”

    You can find some information on the number of people diagnosed with Asperger’s Disorder and Autistic Disorder. According to Eric Fombonne’s recent testimony in the autism omnibus proceeding, his study shows an (underestimated) prevalence of all ASD’s to be 65 per 10,000 people, broken down as follows: 34-35 PDD-NOS, 20-22 Autistic Disordeer, and 8-11 Asperger’s or CDD. So PDD-NOS would be 52-54%, Autistic Disorder 31-34%, and CDD and Asperger’s 12-17%. Dr. Fombonne agrees with Ms. Clark that Asperger’s will probably disappear from the next version of the DSM. He said there are many undiagnosed autistic adults.

    I don’t know what you mean by “high functioning autism,” but if you mean IQ, you’ll see in many studies that the researchers do try to match both autistic and control subjects by IQ. Of course, measuring the IQ’s can be problematical.

    California DDS does keep track of certain characteristics of their “consumers.” In the latest available quarterly report, December 2007, they give these figures for their autistic consumers: 84.06% do not have “severe behaviors,” and 67.33% have no mental retardation. I don’t know if those characteristics fit within your definition of “high functioning,” though.

    By the way, I see that CDDS is finally changing from DSM-III terminology (“Full Syndrome” vs. “Residual”) to DSM-IV terminology (“Autistic Disorder,” “Asperger Disorder” and “Pervasive Developmental Disorder NOS”).
20. Joseph July 13, 2008 at 01:35 #

    I don’t believe Harold cares about facts, data or epidemiology at all. Is it surprising he thinks Autism Speaks’ claims about the count of autistics in the US is unimportant to him?
21. lurker July 13, 2008 at 01:43 #

    I’m tired of the corporate mentality of the people running Autism Speaks in dealing with everything. I wonder what their excuse is for not providing accurate statistics about something so basic. First of all, I think that number has been used for too long and should be updated. I don’t like how they insist on using sharp numbers like 1 in 150. Suppose hypothetically it comes out at another time to be 1 in 147 or 1 in 152, then they should start using an updated number, even if it’s not nice or even.

    It should also be made clear that the figure is for the prevalence of autism spectrum disorders. And there shouldn’t always be a motivation to show ever increasing prevalences of autism. I doubt that there could be many undiagnosed cases nowadays, particularly of those on the severe end of the spectrum. It shouldn’t be so difficult to come up with consistent numbers on prevalence rates. There should be direct methods of acquiring all of the data needed to calculate the prevalence.
22. Ringside Seat July 13, 2008 at 10:14 #

    No surprises here then. There’s a parallel with Aids, where campaigners once generated projections suggesting that eventually everyone would get Aids. It’s just what advocacy organizations do.

    But then there’s also a parallel with just about any medical condition, where the drug industry and its experts will promote stats vastly expanding the numbers affected, in order to vastly increase product markets.

    Far from the anti-vaxxers being any kind of bane to the drug industry, they are among its assets. Think of the lost profit on a couple of one-off shots, and then think of the profit gained on ten years of Ritalin.

    I’m surprised that Autism Speaks isn’t funded by Merck.

    Or is it?
23. farmwifetwo July 13, 2008 at 12:19 #

    Michelle, Ms. Clark, it’s simply the wonderful land of statistics. I hate statistics, probably b/c I understand how they work. Society (news media) likes to twist them and make things worse that they are to feed whatever cause someone is working for and most people believe them that “the sky is falling”.

    I understand the problem… all I have to do is look at my eldest son. Yes, he definately started 6yrs ago on the spectrum. Yes, he still has some “quirks” that we are still working on. But he’ll be fine. Independant, hold a job, marry etc. So… will he still qualify as having PDD OR is he “cured” (I prefer the word “educated”) according to their Stats???

    Not going to lose sleep over it… but it’s something to think about.

    S.
24. Kev July 13, 2008 at 13:24 #

    OT again, sorry.

    Harold, I have nothing against you commenting here when you see fit. But you do not ever seem to want to actually debate the issues, just to have a quick sneer (which is usually mistaken, as in this case. You got the author wrong and mentioned some bizarre thing about your blog alerts) and then leave.

    What do _you_ get out of that exactly? We know you don’t like us. That’s fine. At least the anti-vax brigade have a go at actually debating when they visit. There’s a reason for them to be here. I have no idea what your reason for visiting any other blogs comments sections are.
25. Joseph July 13, 2008 at 14:50 #

    What do you get out of that exactly?

    Harold is a concern troll. That’s his apparent MO in most blog discussions. A clear instance was demonstrated here.
26. Justthisguy July 14, 2008 at 08:22 #

    Farmwife, you know what Mark Twain said, ” There are lies, and then there are damned lies, and then there are statistics.”

    Your own kids are who they are, and might have their characteristic data recorded which would become statistics, but they are still individual human beings which cause the data and statistics, they are not the results of the statistics.
27. Patrick July 14, 2008 at 19:36 #

    Soo, did they ever get their grubby lil mitts on the diamond necklace to go on display at the ego address office of #2, Park way? (yes I use #2 to look like THAT number two, bantha pudu, or worse.)

    Pardon my continued disdain, but in my opinion, anyone who has to have such a showy mailing address is apparently more in it to keep the showy address operating than to really help la causa.

    How do we describe someone who has no time to explain the gory detail(s) to the little people? As Flaming Narcissists, in my book.
28. Tom July 14, 2008 at 21:38 #

    A couple of quick points.

    Non-profits are notorious for playing fast and loose with numbers. This 1.5 million number was likely cooked up in the development office or mandated by the Wrights cuz it sounds like a really big number. The junior epi employee is in a tough spot cuz he can’t defend the number yet can’t undermine mgmt. Ah, fundraising.

    Also, the Park Ave. address is the result of free office space from NBC.
29. Michael August 6, 2008 at 18:10 #

    In and audio podcast put out by Midnight in Chicago in July 2008 entitled “Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield” a thirteen year old boy has some choice words to say about Autism Speaks.

    They come at the end of the podcast, which can be found at http://www.mic.mypodcast.com

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