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Autism rate of 1 percent, and the embargo that wasn’t

7 Oct

Someone at the CDC screwed up. There, I said it.

That’s the bottom line of the story, in case you don’t want to plow through this rather messy story.

Two stories out today are discussing how the 1% autism prevalence story has been handled by the government, the AAP and the media. An emphasis is being placed on how the information embargo was handled and, possibly, mishandled.

One at the Covering Health blog is titled, Autism news raises question: When is an embargo not an embargo?. The second story, at National Public Radio, is titled When News Breaks On Autism, Who Gets It Out First?

Let’s go through the history of this story to unravel a bit of what happened.

This past summer, two studies were in press discussing the autism prevalence in the United States. The first study, based on data from the National Children’s Health Survey, was to be published in the Journal Pediatrics. (This is the one just published) The second study is a CDC report, in the Morbidity and Mortality Weekly Report (MMWR) series. Previous MMWR’s have given us prevalence numbers of 1 in 166 (based on data taken in 2000) and 1 in 150 (based on data taken in 2002).

Someone at the CDC leaked information about these studies to Lee Grossman. Whether Mr. Grossman approached the CDC employee or the other way around is unknown. There also isn’t any information on whether Mr. Grossman was supposed to keep this information confidential.

What is known is that Mr. Grossman publicly discussed this information at an Autism Society of America meeting in July.

Mr. Grossman also discussed this information with Mr. Kirby. How exactly that exchange came about we don’t know. Mr. Kirby has given a version of the story on his blog, but he has also shown himself willing to lie in order to protect a source.

Mr. Kirby blogged information about the two studies on August 11th. He did not name pediatrics as the journal, but he did note that the study would involve the NCHS data.

The pediatrics study was scheduled to come out this week (Monday, October 5). As is usual, the American Academy of Pediatrics released information to the press the week prior. These releases are made so that the press can prepare well researched stories to be published coincident with the paper. The press are not allowed to disscuss the story until the “embargo” was lifted at 12:01 eastern time, Monday Oct. 5.

The embargo system is actually a quite good one. This insures that the press has the time to put together well researched, thoughtful stories on a given topic. The writer who spends a lot of time on a story isn’t penalized by some guy slapping together a quick story to make a scoop. It’s a win-win: the press get to write better stories, and groups like the AAP get good press coverage.

But what do you do when someone has already leaked part of the story? To make it even more complicated, there were really two stories here: the Pediatrics paper published on Monday and the MMWR that isn’t published yet.

Understanding the high level of interest in the story, the U.S. Government decided to hold a conference call with the press. They planned their own data–the MMWR. In this way, journalists covering the Pediatrics story could include the MMWR without having to rely on the bits and pieces leaked by Mr. Kirby.

This call was scheduled for last Friday (Oct. 2) at 3pm.

The information from this call was embargoed. From the NPR story:

“Both the CDC overview and the HRSA study [in Pediatrics] were embargoed, because the subject nature was obviously so similar,” a spokesman for the National Institute of Mental Health told Covering Health. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”

This call was at 3pm.

The U.S. Government decided early Friday morning to hold a second conference call for autism advocacy organizations. This call was scheduled for 2pm, and did not include embargoed information. They didn’t discuss the details of the papers, just the new prevalence numbers (about 1%).

The Age of Autism blog posted the announcement and call in number.

According to Andrew Van Dam at Covering Health:

CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.

“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”

Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”

So, we have two conference calls, discussing much the same information (about 1% prevalence). One was embargoed and the other was not.

David Kirby blogged the story right away on Friday. Mr. Kirby starts his post with:

Washington loves to dump its bad news on a Friday afternoon, and on October 2 it confirmed that 1 percent of American children (and by extension, perhaps 1-in-58 boys) has an autism spectrum disorder.

It is possible that Mr. Kirby didn’t know that the Pediatrics study was to be published on Monday. It is possible that he didn’t know about the second, embargoed conference call.

Possible, but very unlikely.

If he knew (and I believe he did), his introduction is highly irresponsible. It fans the flames of the idea that the government tries to bury autism information. No surprises there, as Mr. Kirby has made a career out of fanning those flames.

Mr. Kirby further fans the flames by indicating that the 2pm call was short:

There was no alarm, and little time for questions from the community that was invited to “visit.” After about 15 minutes, questioning was cut off, and the call abruptly ended. I tried three times to ask a question (via a telephone switching system) and so did many other people on the call, which lasted a total of 39 minutes.

As we now know, the government had to prepare for the 3pm call. Perhaps Mr. Kirby didn’t know about that call. Again, that seems highly unlikely.

Mr. Kirby complains of not being able to pose his question. You can go read it if you want, I am not copying it here. The question, in classic Kirby style, is really a lecture putting out the current talking points of the vaccines-cause-autism groups.

Dan Olmsted at the Age of Autism blog mentioned the conference call as well, but his post was brief and not filled with the leading comments Mr. Kirby chose.

Lisa Jo Rudy at autism.about.com read the Kirby and Olmsted pieces (she mentioned this in her piece) and decided to blog the story herself. Unfortunately, she was a bit confused by what was embargoed and what was not–she discussed the Pediatrics paper (which was embargoed). This was reported to the AAP, who contacted Ms. Rudy and Mr. Rudy pulled the piece. The AAP decided that the embargo breach wasn’t so big as to pull the embargo entirely. In other words, they went ahead and kept the rest of the press to the Monday morning embargo date.

On Sunday, 7 hours before the embargo was lifted, Mr. Kirby ran a copy of his Age of Autism blog piece on the Huffington post.

The Age of Autism blog is still trying to fan the flames, pushing the idea that the mainstream media doesn’t want to cover this story. Mark Blaxill posted a piece today, Autism News: Pathetic Non Coverage, discussing how his home-town newspaper (The Boston Globe) didn’t cover the story when the embargo lifted on Monday. He states that “In the meantime, on Tuesday the Globe posted a link to an abbreviated form of the Associated Press story. A day late and a dollar short.”

I don’t profess to know what methods Mr. Blaxill used when he couldn’t unearth the story on the globe.com webiste. I know that I used “autism” as the search term and quickly found this story, which came out Monday, October 5. There is also the abbreviated AP story that the Globe put out on Tuesday, which Mr. Blaxill references.

What can we say about the whole debacle? It is a big mess. It is a big mess that started when someone at the CDC told Lee Grossman of the Autsim Society of America some confidential information. That person at the CDC screwed up.

Isn’t that just a bit sad? Trusting a prominent representative of a major autism organization has been shown, in this case, to be a mistake.

I won’t say that Mr. Grossman made a mistake by talking to David Kirby. An error in judgment, yes. Mistake, no. Mr. Kirby’s track record of presenting any data in a very biased mode to promote vaccines-causing-autism is quite well established.

I didn’t see any mainstream press coverage that included any of Mr. Kirby’s talking points. He was able to get a prominent spot in the google news searches on autism with his Huffington Post piece.

The main fallout seems to be (a) the CDC will probably clamp down on giving out information and (b) the press has an impression that autism advocates are irresponsible with information.

Facilitated Communication – where does a neurodiverse skeptic stand?

6 Oct

An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.

This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:

Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *

So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?

Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.

Do we need an epidemic for people to take autism seriously?

6 Oct

There is a lot of press coverage around the recent Pediatrics study and the government’s stand that the prevalence of autism spectrum disorders (ASD’s) is about 1%. As I read the articles and, especially, some of the blogs, I am left with the question: why do some people feel that we need an epidemic in order for autism to be taken seriously?

Dr. Geraldine Dawson, chief science officer for Autism Speaks responded to the announcement with:

“There is converging evidence that autism spectrum disorders affect about one percent of the population. This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”

Autism Speaks is a group that depends on donations, and they aren’t making unfounded calls of an epidemic.

An ASD rate of 1% or more has been shown in studies for at least 10 years. The just released study used the National Child Health Survey 2007 data. This raised a bit of a stir when the study results were leaked recently, and I spent a lot of time looking at the raw data. I also pointed out that Joseph at the Natural Variation-Autism blog discussed a number of studies pointing to a 1% or higher prevalence in his post Moving Toward a New Consensus Prevalence of 1% or Higher.

These studies weren’t hidden or obscure, either. Even Dr. Andrew Wakefield, the man most responsible for the notion that the MMR vaccine causes autism, cited the Swedish study in his early patent application.

The studies are known to researchers in the field. In a Time magazine story out Monday, Prof. Richard Roy Grinker is quoted:

What’s significant is that the study lines up well with other, more rigorous studies finding a 1% rate of autism. “It provides what scientists call convergent validity: no matter how you shake the bushes, you come up with this 1%,” says Richard Roy Grinker, an autism researcher at George Washington University who has worked to determine ASD prevalence in South Korea.

As noted, Prof. Grinker’s team has studied the ASD prevalence in South Korea. At the Autism Speaks “Decade for Autism” kickoff at the U.N., one of Prof. Grinker’s collaborators, Dr. Young Shin Kim, noted that the prevalence in Korea is likely in line with other countries–1 in 100 to 1 in 200.

If you think the recent jump from 1 in 150 to 1 in 91 was a shocker for the United States, wait until the Korean prevalence jumps from 1 in 10,000 to, say, 1 in 150. Will they claim epidemic, or will they realize that the previous prevalence method seriously under counted the autistic population?

Prof. Craig Newschaeffer of Drexil University is quoted as in Time Magazine saying:

“Nonetheless, the survey reinforces what we have come to understand over the past decade — that autism is much more common than previously thought.”

It is safe to say that Geraldine Dawson, Richard Roy Grinker and Craig Newschaeffer take autism very seriously. And yet they (and the vast majority of the autism research community) do not believe in or feel the need to promote autism as an “epidemic”.

The major autism research organizations aren’t claiming an epidemic. Autism Speaks, Simons Foundation, and the Nancy Lurie Marks (NLM) Family Foundation aren’t calling this an epidemic. Even the Autism Society of America didn’t call the news an “epidemic” in their press release. My guess is that no one will be shocked that the Autistic Self Advocacy Network didn’t call the latest prevalence figures a sign of an epidemic.

Look outside the autism communities. Do we need to hear “epidemic” in order to take disabilities seriously? No.

One can take autism very seriously and still not consider it an epidemic. I realize that many readers of this blog won’t consider this news at all.

I know many people can’t see how jump in the number of ASD diagnoses (or, in the case of this study, parent-reported autism diagnoses) doesn’t mean an epidemic. But many of us have been pointing out how the previous ASD prevalence values were under counts.

Frankly, I find it very disturbing that we likely haven’t been identifying all the autistic kids and adults for all these years.

I find it more disturbing that many of the so-called autism advocacy organizations have been so willing to ignore the possibility that the prevalence estimates were an under count–all in the name of promoting vaccine causation.

The most cited autism prevalence number up until now was 1 in 150. This came from a CDC report called an MMWR, published in 2007, Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002.

The study looked at 8 year olds in 2002–children born in 1994. The prevalence was 1 in 150. Another way to put that is 67 per 10,000.

These same children were 13 in 2007, when the NCHS survey data was taken. This is the data used for the 1 in 91 prevalence estimate released this week.

Take a look at Table 1 from the recent Pediatrics study. The prevalence for 12-14 year olds is 118 per 10,000.

So, one study, using one methodology, using data from 2002 and published in 2007 gets 66 per 10,000.

Another study, using different methodology, using data from 2007 and published in 2009 get 118 per 10,000.

This for the same group of kids.

Is there an epidemic? Is there an epidemic that nearly doubles the autism prevalence kids between the time they are 8 and the time they are 13?

Autism advocacy doesn’t need an epidemic to be taken seriously. In fact, pushing an epidemic will make sure we aren’t taken seriously.

Autism rate 1 in 100 in American Children?

5 Oct

A new study in the Journal Pediatrics claims a prevalence of Autism Spectrum Disorders of 110 per 10,000 (1.1%). This is notably higher than previous estimates based on the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.

There is little doubt in my mind that this will get a lot of media attention.

The paper is:

Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007

by

Michael D. Kogan, PhD,Stephen J. Blumberg, PhD, Laura A. Schieve, PhD, Coleen A. Boyle, PhD, James M. Perrin, MD, Reem M. Ghandour, DrPH, Gopal K. Singh, PhD, Bonnie B. Strickland, PhD, Edwin Trevathan, MD, MPH, and Peter C. van Dyck, MD, MPH

Here is the abstract:

OBJECTIVES: The reported increasing prevalence of autism spectrum disorder (ASD) and attendant health and family impact make monitoring of ASD prevalence a public health priority.

METHODS: The prevalence of parent-reported diagnosis of ASD among US children aged 3 to 17 years was estimated from the 2007 National Survey of Children’s Health (sample size: 78 037). A child was considered to have ASD if a parent/guardian reported that a doctor or other health care provider had ever said that the child had ASD and that the child currently had the condition. The point-prevalence for ASD was calculated for those children meeting both criteria. We examined sociodemographic factors associated with current ASD and with a past (but not current) ASD diagnosis. The health care experiences for children in both ASD groups were explored.

RESULTS: The weighted current ASD point-prevalence was 110 per 10,000. We estimate that 673,000 US children have ASD. Odds of having ASD were 4 times as large for boys than girls. Non-Hispanic (NH) black and multiracial children had lower odds of ASD than NH white children. Nearly 40% of those ever diagnosed with ASD did not currently have the condition; NH black children were more likely than NH white children to not have current ASD. Children in both ASD groups were less likely than children without ASD to receive care within a medical home.

CONCLUSIONS: The observed point-prevalence is higher than previous US estimates. More inclusive survey questions, increased population awareness, and improved screening and identification by providers may partly explain this finding.

The authors used the National Survey of Children’s Health. We have discussed the NSCH data previously on this blog.

The data are based on a phone survey, and use parent reports, not direct observations. For example, the researchers didn’t actually test any children, but they instead relied upon the phone survey answers to questions like:

For each condition, please tell me if a doctor or other health care provider ever told you that [your child] had the condition, even if he/she does not have thecondition now….Autism, Asperger disorder, pervasive developmental disorder, or other ASD?

The 1412 who answered yes to that question were asked:

Does [your child] currently have autism or ASD?

With 913 answering yes.

78,037 families were polled. This was a response rate of about 51% (assuming that all calls that were unanswered were residences and not busisnesses).

I have discussed raw data from the 2007 NCHS. By contrast, the researchers corrected the raw data for various factors that could cause systematic errors.

Estimates were weighted by using survey sampling weights available from the National Center for Health Statistics. These weights reflect the inverse of the probability of being selected for the survey and were adjusted to account for nonresponse and noncoverage of households without landline telephones. Weighted estimates are representative of the US noninstitutionalized population of children aged 3 to 17 years.

After correcting for these factors, the authors came up with a prevalence value of 110 per 10,000 children. (1.1%)

Parents were asked about the severity of their child’s ASD. Most answered mild. The breakdown is

Mild: 54 per 10,000
Moderate:37 per 10,000
Severe: 18 per 10,000

The age distribution wasn’t flat, but neither did it show the huge variation one would expect from special ed data, CDDS data or other sources often cited.

3-5 years old: 85
6-8 years old: 132
9-11 years old: 138
12-14 years old: 118
15-17 years old: 77

There is a higher prevalence amongst males than females, as expected. The prevalence amongst Hispanics (103/10,000) and non-Hispanic African Americans (61/10,000) are both lower than amongst whites (125/10,000).

Many of the results are shown in Table 1 from the study, shown below.

Table 1 of prevalence report using NSCH data

Table 1 of prevalence report using NSCH data

Aside from the overall prevalence number, the second hot topic from the survey is the large number of children whose parent answered yes to “have you ever been told that your child has an ASD” but who answered no to “does you child now have an ASD”.

People are referring to these children as having “lost” their diagnoses. They account for about 0.4% of the total survey.

The authors spend a significant amount of time discussing the possible reasons why some children may have “lost” a diagnosis. We have already discussed some of the reasons on this blog.

The bottom line is, there isn’t enough information in the survey to tell. We do know that most of the children who “lost” an autism diagnosis had some other disability.

It needs to be stressed–there is no confirmation that these children ever had an official diagnosis of autism. That isn’t just for the group that “lost” autism, but for the entire group.

This is a significant limitation of this study. I have stated before, I think this sort of survey is good for generating questions for future studies. For that purpose, these surveys are valuable. They are faster and cheaper than a full study. But it is far from the sort of data that should be used to claim a definitive prevalence.

I expect to see a lot of press coverage of the new “prevalence”. While this study is a good, and it is consistent with many studies that show a prevalence in the 1-1.5% range, the data just aren’t strong enough to make such definitive statements.

Edited to add:

The USA Today story on this study has a quote that I think sums it up quite well:

Pediatrician Susan Levy, founder and director of the Regional Autism Center at Children’s Hospital of Philadelphia, notes that Kogan’s study is based only on what parents said about their children, not information from doctors involved in their care.

“For what it is, it’s very well done, and I don’t mean that critically,” she said in an interview. “It is one method of getting a handle of how many people in the country have this disorder. Is it the best method? No, but it is one way of approaching it.”

Do techie parents have more autistic kids?

2 Oct

This is the stuff of legend. So says the Simons Foundation blog in discussing a new epidemiological study out of California. A previous study reported that fathers of ASD kids are more likely to be engineers. The idea got into the mainstream media (and deep into the public psyche) when Wired Magazine even called the phenomenon the “Geek Syndrome“.

Well, someone checked. Someone being Gayle Windham, Karen Fessel and Judith Grether. If you are an autism epidemiology geek, you will recognize at least some of those names.

Here’s the abstract:

Autism spectrum disorders in relation to parental occupation in technical fields
Gayle C. Windham, Karen Fessel, Judith K. Grether

A previous study reported that fathers of children with autism spectrum disorders (ASD) were more likely to work as engineers, requiring systemizing skills, and suggesting a distinct phenotype, but alternatively this may have been related to selection biases. We conducted a population-based study to explore whether fathers, or mothers, of children with ASD are over-represented in fields requiring highly technical skills. Subjects included 284 children with ASD and 659 gender-matched controls, born in 1994 in the San Francisco Bay Area. Parental occupation and industry were abstracted verbatim from birth certificates. Engineering, computer programming, and science were examined as highly technical occupations. To limit bias by parental socio-economic status, we selected a referent group of occupations that seemed professionally similar but of a less technical nature. Odds ratios (ORs) and 95% confidence intervals (CI) were calculated by logistic regression, adjusting for parental age, education, and child race. Mothers of cases were somewhat more likely to work in hi-tech occupations (6.7%) than mothers of controls (4.0%, P=0.07), but little difference was observed among fathers, nor for engineering separately. Compared to parents in other white collar occupations, the adjusted OR for highly technical occupations among mothers was 2.5 (95% CI: 1.2-5.3) and among fathers was 1.3 (95% CI: 0.79-2.1), with no evidence of a joint effect observed. Our results regarding maternal occupation in technical fields being associated with ASD in offspring suggest further study to distinguish parental occupation as a phenotypic marker of genetic loading vs. other social or exposure factors

To summarize it even more: mothers in “highly technical” jobs had a 2.5 times higher chance of having an autistic kid. There isn’t a clear statement for fathers. Also, there isn’t evidence of a “joint effect”. I take that to mean that the “geeks marrying geeks have more autistic kids” idea didn’t pan out.

They can’t say why mothers in highly technical jobs have more autistic kids. This makes it a study that can be quoted by everyone. “It’s genetic, see mothers in technical jobs have more autistic kids”. “It’s social, mothers in technical jobs are more likely to know about autism and get their kids diagnosed”. “It’s environmental, mothers in technical jobs are exposed to more toxins”.

In the end, this is no joke. We need to understand all the factors that can affect epidemiological studies. Epidemiological data for autism are pretty muddy, in my opinion. A lot of things have happened in the last 20 years (or more) that have changed the “rate” of autism diagnoses. Anyone who wants to find one of the many causes of autism (which is, as we all know a plural: autisms), needs to understand these factors.

ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices

2 Oct

The Autistic Self Advocacy Network is gathering support from multiple disability groups to protest recent actions by Autism Speaks.

Blogged at LBnuke and Autistic Self Advocacy Network, SW Ohio

ASAN is calling for more organizations to sign the joint letter:

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

And here is the letter:

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism…I know where you live…I work faster than pediatric AIDS, cancer and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain…I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain…I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.”

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Are kids with autism more likely to have gastro issues?

2 Oct

Interesting new paper in Pediatrics:

OBJECTIVE: To determine whether children with autism have an increased incidence of gastrointestinal symptoms compared with matched control subjects in a population-based sample.

So do autistic kids have more constipation, diarrhoea, reflux, bloating or feeding issues? The conclusion was:

As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.

Which is self explanatory but (in my opinion) badly worded. Are the authors saying that _all_ the gastro symptoms they looked at have behavioural aetiology or just constipation and feeding issues? And if the latter, whats their conclusions about the others?

The answer can be found in the results section:

Significant differences between autism case and control subjects were identified in the cumulative incidence of constipation (33.9% vs 17.6%) and feeding issues/food selectivity (24.5% vs 16.1). No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category.

OK so for the other three no real difference was found between autistic kids and non autistic kids. Thats why they weren’t mentioned in the conclusion.

Constipation (as is bloating and diarrhoea) is regularly quoted by the anti-vaccine/autism lobby as being part of a set of gastro symptoms ’caused’ by vaccines, along with their child’s autism. This paper addresses that fallacy directly and clearly shows that three issues are no different than non autistic kids and two may have a behavioural cause.

Murderers should not be pitied

30 Sep

The deaths of a man and his 11-year-old autistic son on Sunday were the result of a murder-suicide, Edmonton police said….”To say that this can’t happen for other families,” Phillips said as her eyes welled up with tears talking about the tragedy. “The dad just felt he couldn’t do it any longer and he just didn’t think he could get the help he needed.”

So? So what? We all struggle. Its damned hard, we all lack services, all autism parents all over the world and guess what? We don’t murder our kids.

Don’t pity this murderer, don’t enable pity for this murderer, don’t blame lack of services for excusing a murderer and try to remember not to kill your children today, okay?

Disgusted.

1 in 100 adults are autistic

30 Sep

A recent report by the Information Centre of the UK’s National Health Service says that the autism prevalence for adults is about 1 in 100.

The report, Autism Spectrum Disorders in adults living in households throughout England, states:

Using this recommended threshold score on the ADOS, 1.0%of the adult population had ASD. The rate was higher in men (1.8%) than women (0.2%), which fits with the profile found in childhood population studies.

This isn’t very new news, Anthony Cox and Kev Leitch on this blog have already discussed this.

I would suggest that the first reaction from pretty much everyone (including myself) was wrong.

What should the take-away message be from this?

Simple–there are a lot of unidentified adult autistics who are likely getting little, no, or inappropriate support.

From the report:

“Perhaps most important of all is the finding that adults with ASD are socially disadvantaged, less well educationally qualified, less able intellectually and possibly under-supported by services. Much of this could be alleviated with greater involvement of existing established social, educational, welfare and health care services.

Another point that really sticks out to me is:

There was no indication of any increased use of treatment or services for mental or emotional problems among people with ASD.

We don’t know if this is because they don’t need more services or they just aren’t getting them.

Two more statistics are also worth pointing out: 4.5% of unmarried male adults are identified as ASD. 8% of male adults in social housing are identified as ASD.

That’s huge. Imagine walking through a specific housing complex and 1 in 12 men you see are autistic.

Now that I am done lecturing everyone (including myself) about what I think the important message is from this report, let’s take a look at the report itself. Specifically, let’s consider the complaints that are being levied against it.

The first thing that struck me is that this is a report, not a published study. It is not, to my knowledge, peer reviewed in the same sense as a journal article. It is in the same class as the MMWR reports that the CDC puts out (a government report) that are used by almost everyone to discuss the prevalence of autism. So, if you use 1 in 150 or 1 in 166 prevalence numbers, don’t complain about this UK report being non-peer reviewed.

People are complaining about how the study was conducted. Here is the basic process:

A. Phase one AQ-20 self-completion screen
B. Selection of cases for phase two assessment
C. Phase two ADOS assessment of a subset of cases
D. Weighting to adjust for selection probabilities and non-response.

This was not worded well, since many people assume that the phase one screen only used the AQ-20. As I will discuss below, this is not the case.

The initial screen started by identifying addresses that were residences, and selecting some by random selection. They selected 13,171 possible households for phase-1. Of these, 57% agreed to respond.

9% of sampled addresses were ineligible because they contained no private households, while 4%were addresses of unknown eligibility (see Section 3.2.5). This left an estimated base of 13,171 known eligible or probable eligible households for the phase one interview. The proportion of selected adults who agreed to take part in an initial interview is shown in Figure 3B. At the phase one interview, 57% of those eligible agreed to take part in an interview. This included 50 partial interviews where the respondent completed the service use and CIS-R modules, but did not reach the end of the interview.

These interviews were not just the AQ-20 screen, as noted below:

The phase one interviews were carried out by NatCen interviewers. These included structured assessments and screening instruments for mental disorders, as well as questions about other topics, such as general health, service use, risk factors and demographics. These interviews lasted about 90 minutes on average.

90 minutes per interview, with 7,353 full interviews works out to 5.3 man-years of labor.

This was no small effort.

Many complaints I have seen concentrate on the AQ-20 test. The full AQ test, or Autism Quotient, is a product of the Cambridge Autism Research Centre, and has been studied already. It is usually a 50 question test, but it was shortened to 20 questions (hence AQ20) and adapted for the NHS survey. They shortened the AQ to save time.

Many people have been confused that this short questionnaire was the method used to make the autism diagnoses. People pull questions out and question whether they could be used to diagnose autism. The AQ20 wasn’t used to make the diagnoses. It was only a part of the phase-one, pre-screen, part of the study. The diagnoses were made using the ADOS.

They used the information from phase 1 to select a smaller subgroup for the more intensive phase-2 part of the study. Amongst this smaller group, the researchers chose people they thought were more likely to have psychosis, Asperger syndrome or personality disorder.

7461 respondents provided a productive phase one interview. Of these 58 were proxy respondents and therefore not eligible for the phase two interview (see Figure 3E). A probability of selection was calculated for each respondent based on their answers to the phase one screening questions on psychosis, Asperger syndrome, and personality disorder: as outlined in Section 3.2.6. 5,329 respondents had a probability of selection of greater than zero: 4050 of these also agreed to be recontacted for a phase two interview (76%). After the application of the highest of the four disorder specific sampling fractions, 849 respondents were selected for a phase two interview. Phase two interviews were conducted with 630 of these (74%).

618 of the 630 people who underwent the phase-2 interviews were given the ADOS test. A score of 10 on the ADOS was chosen to indicate a diagnosis of an ASD. Of these, 19 scored above 10 on the test and were diagnosed as having an ASD.

If one took these data to calculate a crude prevalence, a value of 19/618 or about 3% (1 in 32) would be obtained. No one is saying this is an accurate estimate, but it is worth noting for this reason: quite obviously, the phase-1 screen was successful in finding a larger number of autistics than

These data were weighted to estimate a prevalence for the overall study group, including non-responders. They came up with a prevalence of 1% (1.8% for males 0.2% for females).

Here are some of the complaints I have read about this report:

1) They define adult with ages as young as 16.

this is supposed to be a sign that they are trying to fudge the data by including people who are really part of the so-called “epidemic”.

Well, the UK Census defines adults as people age 16 and over. If including 16 and 17 year olds were a problem, one would expect the younger age category to have a much higher prevalence. It doesn’t.

age group 16-44: prevalence 1.1%
age group 45-74: prevalence 0.9%
age group 75+: prevalence 0.8%

(from table 2B)

Another complaint is that there were no ethnic or racial minorities in the group of 19 identified autistics. This is a good check for internal consistency, but it isn’t a valuable check in this case.

The UK has about 90% white population. They tested 618 individuals with the ADOS. If the selection were random in ethnicity, they would have 61 minority participants. A 1% autism rate would lead us to expect 0.6 ethnic minority autistics.

People have complained that the study only shows adults in residential housing. I.e. they didn’t check institutions.

The report is very clear about this (it is even in the title). They note:

The sample for APMS 2007 was designed to be representative of the population living in private households (that is, people not living in communal establishments) in England. People living in institutions are more likely than those living in private households to have ASD, however this group was not covered in the survey reported on here and this should be borne in mind when considering the survey’s account. At the time of the 2001 Census, 2% of the English population aged 16 years or over were resident in a communal establishment.

So, yes, by leaving out those in institutions they didn’t measure the prevalence in the total UK population. That is a limitation of this report. The prevalence in the institutions is very likely to be higher than in residential settings. I.e. they would have found more autistics had they look in institutions and they would have found a higher prevalence overall.

One complaint is that they only identified 19 adult autistics in phase two. This is definitely worth considering as that puts some big error bars on the results. This becomes especially when they try to break the results down by age, gender, or other category.

It has been proposed that one can’t extrapolate from the 19.

But, just for fun, let’s make the assumption that the 19 adult autistics ID’d in phase 2 group (of about 618) are all there would be in the entire group studied (7353).

That would give a prevalence of 25 per 10,000.

This is much higher than people have been claiming the prevalence should be amongst adults. Many people claim the prevalence rate for adults should be about 1 in 10,0000 or 3.3 in 10,000.

To put it simply, those claiming there is an epidemic of autism are off by at least a factor of 7.

Or, to put it another way,

It isn’t a question of whether there are factors such as widening of the criteria or diagnositic substitution/accretion that have caused some of the rise in the autism “rates”. The question is what factors have been in play and how big of an effect did they have.

Another criticism I have seen is that the male:female ratio is quite high, 18:1, as opposed to the 3:1 or 4:1 found in most studies. They found 19 autistics. A 3:1 male:female ratio would lead us to expect 5 females. I’ll let the statisticians tell me if this is significant, but they did find fewer women than I would expect. The report notes repeatedly that the small number of women limits the analysis.

I have been told in the comments on this blog that the study was done cheaply. I wouldn’t be surprised. However, it does represent a significant effort. I am impressed that anyone undertook to do a prevalence study on adults.

This isn’t a definitive or end-all study. Far from it. But it is a reasonable study and a very good start. I hope this is the beginning of a much greater effort to gather more information on adult autistics. It is pretty frightening to think that a very large segment of the autistic population could be undiagnosed and possibly receiving inappropriate supports.

I am autism video removed from Autism Speaks’ website…or is it?

28 Sep

I am not fond of the Autism Speaks video, “I am Autism”. I think I’ve made that clear.

I was heartened to hear that Autism Speaks had removed it from their website. That moment was short lived.

Over at Whose Planet Is It Anyway?, abfh has noted that Autism Speaks has posted an email that has been sent out to a number of people who complained about the video:

Dear [name],

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

But, as abfh notes, the video is still on the Autism Speaks website.

If you want further reading–here are the sites from the first page of a google search for “I am autism”.

Asperger Square 8

I Speak of Dreams


Protesting Autism Speaks “I am Autism” Video | Facebook

THE NEW REPUBLIC: I Am Autism Speaks

I am Autism Controversial Video Disability Videos

I Am Autism Speaks

There is a page witha blog post that has a similar sentiment to the Autism Speaks video, but that predates the Autism Speaks video by quite some time.

I Speak of Dreams has a running list of blog posts about this.

(note, some minor corrections were made after this was published)

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