Jenny McCarthy: I’d like to see some action behind those words

18 Aug

Jenny McCarthy is on the cover of the latest Cookie Magazine. As part of her interview, she asserts that she is “pro safe vaccine”, not anti vaccine.

Now McCarthy, along with her boyfriend, actor Jim Carrey, serves on the board of directors of Generation Rescue, an advocacy and research organization that calls for eliminating toxins in vaccines and for delaying shot schedules.

Notice “delaying” shot schedules.

Another quote, talking about her own experiences:

Going over his medical history now, she sees a link between a series of ear infections, a severe case of eczema, and a hepatitis-B booster shot. “Looking back, I’d say, ‘God, if a kid is having more than seven ear infections in a year and he’s got eczema, there are some issues here—his immune system is obviously under attack, and we need to put him in the sensitive category. Let’s just delay some of his shots,’ ” she says. “Not eliminate, delay.”

Again, note the phrease “Not eliminate, delay”.

This isn’t exactly new. The Generation Rescue website page on vaccines tells parents to “consder delaying vaccines”. As near as I can tell, GR has had a statement like this since the vaccines page was first put up.

But here is where actions and words part company for both Jenny McCarthy and Generation Rescue. They have “recommended” vaccine schedules. Their “favorite” schedule, included in their paragraph on “consider delaying” vaccines, states flat out: no live virus vaccines. I.e. no Measles, Mumps, Rubella or Varicella (chicken pox).

That’s not “delay” that’s “eliminate”.

Let’s compare the GR alternative schedules to the CDC recommended schedule, shall we?

The childhood schedule includes vaccinations against 15 diseases:

Hepatitis B
Rotavirus
Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Pneumococcal
Polio
Influenza
Measles
Mumps
Rubella
Varicella
Hepatitis A
Meningococcal

Now let’s check GR, Jenny McCarthy’s organization, and their recommended schedules:

First, GR’s “favorite” schedule only has protection against 4 diseases.

Pertussis
Diptheria
Tetanus
and, Polio

Again, that’s not “delay” that’s “eliminate”.

For their second option, GR claims you can “turn back the clock” and use the 1983 schedule. I don’t know how anyone could think that is supposed to be a “delay” in shots. Here’s the count (6 diseases covered):

Diptheria
Tetanus
Pertussis
Polio
Measles
Mumps
Rubella

As the third option, Jenny McCarthy’s organization suggests you “go Danish” and use the Denmark schedule (7 diseases):

Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Polio
Measles
Mumps
Rubella

Jenny McCarthy *says* she is promoting “delaying” vaccines. Her actions speak much louder than her words.

If you want to say you are for “delaying” vaccines, then change your website. Pretty simple.

Of course, when you do, I’d love to see the science showing that the delayed schedule you pick is safer than the current one.

Autism Epidemic? Not in the NSCH data

17 Aug

There is an epidemic of vaccine-induced autism. Must be, we’ve been hearing this for about 10 years. During that time, many datasets have been manipulated to “prove” the epidemic. The two datasets that come to mind most readily are the U.S. special education data (IDEA data) and the California Department of Developmental Services data (CDDS). Neither were intended for true epidemiology.

That intro should be a warning: be prepared for more armchair epidemiology. Interested in the short answer? A new dataset is out that just doesn’t fit the idea of an “epidemic” of vaccine induced autism. No huge increases in autism counts.

The new dataset available is the 2007 National Survey of Children’s Health. The NSCH data includes questions about autism. So it should come as no surprise that it was spun into support for the “epidemic” already.

As a bit of background, let’s start with the US special education data. It’s a favorite dataset for those pushing the epidemic. Here’s a graph hosted on the Thoughtfulhouse website (click to enlarge):

special ed data supposedly showing an epidemic

special ed data supposedly showing an epidemic

Wow. That’s an epidemic. 16 year olds have an “incidence” (their word) of 0.4 per 10,000 while younger kids are at nearly 20? That’s an increase of 50 times. Impressive. Until we look at the NSCH data.

By coincidence the Thoughfulhouse data are from 2007, the same year as the NSCH data. What happens if we plot the NSCH data like the graph above? Again, click to enlarge. Sorry, I couldn’t format it to look just like the ThoughtfulHouse graph.

National Child Health Survey data on autism

National Child Health Survey data on autism

Doesn’t even look close to the data on the Thoughtfulhouse website. First, the “incidence” numbers for around age 16–0.4 for ThoughtfulHouse’s graph, 93 for the NSCH data. I wanted to graph the data on the same graph, but the newer, NSCH numbers just dwarf the IDEA numbers that ThoughfulHouse used.

Besides the difference in overall magnitude, what about the “epidemic”. What about the huge increases in autism “incidence” or “prevalence”. Numbers like 273% increase, or more, in autism are commonly quoted for the increase in autism diagnoses in the 1990’s. Well, those increases just aren’t observed in the NSCH data. Keep in mind, the 17 year olds in the NSCH data graph were born in 1990. There just isn’t the dramatic increase in an autism count in those data.

There is a a much smaller trend of increased autism count when moving from about age 17 down to about 12. The “incidence” increasing by about 40%. That’s a big number. Not hundreds of percent, but a big number.

The “incidence” goes down for younger kids–which must be partially or completely due to the average age of diagnosis being about 5. There is at least one blogger who is “sparking the debate” that this could be a sign that the removal of thimerosal has resulted in lower autism counts. The same blogger has stated at different times that we should have already seen any drop in the CDDS data and, later, that we won’t be able to see any trends until sometime well past 2010. That’s covering your bases! Either we saw it already, we are seeing it now, or we need to wait until the future to see it.

But, back to the NSCH data. Pretty much, those data are flat for birth year 1995 to 2003. Noisy but flat. That’s when the “epidemic” was in full force.

Or, another way to put it–there is no good evidence of an epidemic in the NSCH data.

Working together to advance respect for autistics

17 Aug

It was over before I knew it had happened. And it ended well.

Joe over at the Club 166 blog spotted a billboard that was, well, rather reminiscent of the “Ransom Notes” campaign billboards that caused a great stir in the autism communities. It appears that Joe spotted this billboard in Lancaster County, Pennsylvania:

York ASA Billboard

York ASA Billboard

Well, Joe blogged it as Could We Have A Little Originality, Please. That was Friday. He then sent the following letter on Sunday.

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

And this led to a “Quick Resolution“.

Along the way, Joe had help from abfh, including her “end of week stupid roundup” post.

Also, ASAN got involved. Here is Ari Ne’eman’s letter discussing what happened:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community’s reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York’s President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

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

I’m glad to see this advocacy effort pay off so amicably and so quickly.

Evidence of autism recovery

14 Aug

There’s evidence of autism recovery on a vast scale. That is what we are being told by bloggers covering the latest survey from the National Survey of Children’s Health. The survey showed that some parents are told that their kid is autistic, but the kid doesn’t isn’t currently autistic.

The survey is an intersting thing. They call homes and ask a lot of questions about one of the kids in that home. The questions are not just about autism, but about lots of medical topics. They do this survey every few years.

They added some new questions to the survey this time. In the past they just asked if your kid had autism. Now, they have a two part question:

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

followed by

does [the child] currently have autism or ASD

Many of the people who responded “yes, someone told me my kid had an ASD” later responded “No” to “does you child currently have Autism or an ASD”.

Bloggers are saying this means that kids “lost their original diagnosis”. Well, we can’t say that. We don’t know what the *original* diagnosis was. Consider this. We don’t know if a kid had a diagnosis of developmental delay, then someone suggested autism, then later retracted the autism on a formal diagnosis. In that example, the kid still has his “original” diagnosis: developmental delay.

I can feel the eyes rolling as people think, “there he goes, trying to weaken the evidence of recovery with vague statements”.

So, let’s look a data. Let’s dig a little deeper than most. I’m not so good at SAS (the statistical package that is used to read the data), but I think I did OK. Let me know if you catch a mistake and I will correct it.

How many kids had a diagnosis (or just a statement) that they were autistic?

Answer: 1427

How many kids were told they were autistic and later were told they were not?

Answer: 459. About 1/3 of the total.

People stop there and leave it implied that the kids don’t have any diagnoses any more. Bad assumption. Let’s check on that. Let’s look at some of the other diagnoses given in the NCHS.

How many of the 459 now have other diagnoses? Here’s a sample of a few other diagnoses:

219 Developmental delay
27 Speech delay and no developmental delay
8 Brain injury and no developmental delay
65 ADHD and no developmental delay

There may be some crossover between, say speech delay and brain injury or ADHD, but for simplicity I’ll just add them all together to get:

319 of 459 (70%) have one of the diagnoses I listed.

A more simple check: how many of the 459 need supports in school? 97%. All but 14. Yes, parents are being told that their kids “have autism” and the parents are later finding that the kid does not “have autism”. That doesn’t mean that the kids are “recovering”.

Is it possible these kids really qualified for an autism diagnosis at one time? Sure. But, I would assert it is as likely or more that a lot of misdiagnoses were made. That’s if autism diagnoses were ever made. Remember that question?

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

Well, if you pediatrician said, “I think this kid may have autism. Go see a psychologist”, may parents would anwer “yes” to the question. The kid wasn’t diagnosed. Pediatricians can’t diagnose. But his parents were told he/she had autism.

Be that as it may, the bottom line: the idea that the NCHS data shows that kids are recovering from autism is weak at best. The data certinainly doesn’t show kids recovering from autism and becoming typical. Most of the “recovered” kids still have a diagnosis of some sort. Almost all are receiving some sort of support in school.

There is more information in the dataset. A couple of blog posts more, at the least.

Chelation challenge testing: not scientific, not beneficial, may be harmful

13 Aug

Who knows about the toxic effects of mercury? Toxicologists. The premier toxicology group in the U.S, the American College of Medical Toxicologists, represents the doctors who test and treat people suffering from real heavy metal poisoning.

By contrast, many doctors have added chelation to their treatment options due to the false theory that autism is caused by heavy metal poisoning (specifically, mercury). These alternative-medicine practitioners usually depend on non-standard test to “prove” heavy metal poisoning. The favorite seems to be the “challenge” chelation test. In this test, a chelator is given to a person before a urine test. Chelators are chemicals which bind to metals in the body and allow them to be excreted more easily. Thus, if you give a chelator to a person, you expect their urine to show higher levels of heavy metals.

This has been discussed on this blog and elsewhere for a long time.

And now the American College of Medical Toxicologists has come out with an official position statement.

The practice is not scientific. There are no reference values for post-challenge urine metal testing. There is no correlation between actual metal exposure and post-challenge test results.

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

It’s time for post challenge urine testing to end. It is time for chelation as a “treatment” for autism to end. It is time for those who promoted the “autism is mercury poisoning” theory to step forward and admit their mistakes.

Autistic Youth Coming of Age

13 Aug

Here’s what I call a good use of stimulus money in the US. Dr. Paul Shattuck of Washington University in St. Louis has a NIMH grant to study adolescents with diverse socioeconomic and racial backgrounds.

The study will focus on

Outlining changes in service needs, service use, and health insurance coverage as youths with ASD enter adulthood

Identifying resources and barriers associated with use of, and continuity in, health care and other services

Detailing young adult outcomes (such as employment, housing, independent living, health, and community participation) and examining how these may be linked with prior measures of need, service use, resources, and barriers.

This is the kind of study that can really help autistic adolescents and young adults.

This is the kind of study those of us with young children need to see.

By the way, I am only assuming the funding for this project came from the Stimulus package funding. Either way, it is a good research topic. I have a lot of respect for Dr. Shattuck at Washington University.

NY Times: Disabled Students Spanked More

12 Aug

An article in the NY Times from two days ago reports on a study that shows that in states where corporal punishment is allowed, disabled students are punished more than their non-disabled peers.

This is based on a study by Human Rights Watch and the American Civil Liberties Union.

The report, based on federal Department of Education data, said that of the 223,190 public school students nationwide who were paddled during the 2006-7 school year, at least 41,972, or about 19 percent, were students with disabilities, who make up 14 percent of all students.


The study is online.

In one state, Tennessee, disabled students were punished more than twice as often as their non-disabled peers.

Two examples from the report:

The ACLU and Human Rights Watch received numerous reports of students who were punished for the consequences of their disability. Many of the cases involved students with autism, who were physically punished for exhibiting behaviors common to children on the autism spectrum. Some parents reported that school staff did not take their children’s conditions under consideration when administering discipline. Students are being beaten for behavior they simply cannot control, or cannot reasonably be expected to control, a grossly disproportionate and fundamentally demeaning response to the child’s condition.

and

Despite this medical and scientific evidence, the ACLU and Human Rights Watch received numerous reports of children with autism who were punished because of their behavior. Sharon H., the mother of a girl with autism in Georgia, described her daughter’s experience: “One time, she was just sitting, rocking side-by-side in the gym. That’s what autistic kids do. She was five at the time. The fourth-grade teacher grabbed her and dragged her across the floor.”[136] Another kindergarten girl with autism in Georgia was thrown into a wall after she started rocking and spinning at the same time.[137]

Much of these statements are anecdotal and unanswered by the school system. And, yet, they are very serious and, let’s face it, not unlike what we have all heard (and some seen firsthand).

Autism Omnibus: Snyder appeal denied

12 Aug

The appeals for the MMR phase of the Omnibus are now concluded: all three were denied.

The Autism Omnibus Proceeding is the way the “Vaccine Court” has taken on the task of deciding the merit of the theory that autism is a vaccine injury. The petitioners had two basic theories: (a) the MMR vaccine can cause autism and (b) the vaccine preservative thimerosal can cause autism.

Three hearings were heard for each theory. In each hearing a single individual took the role of a “test case”. So, each hearing not only represented the case of a single child, but also presented “general causation” evidence as to whether MMR or thimerosal could cause autism.

The six test cases (three MMR and three thimerosal) have been heard. The MMR cases were ruled upon, and all three were denied. All three were appealed. And, now, all three appeals have been denied.

Here is the conclusion of the appeal for the last of the MMR test cases, that of Colten Snyder:

As the special master’s decision makes clear, Colten, and by extension, his family, have dealt with significant adversity for many years, and, like the special master, the court is very sympathetic to their circumstances. However, the court cannot be ruled by emotion and base its determination solely upon the adversity endured by petitioners’ family. Moreover, it is not the task of this court to determine whether vaccines cause autism or other neurodevelopmental disorders. Rather, the court must decide whether the special master, considering the record as a whole, rendered a decision that was arbitrary, capricious, an abuse of discretion, or otherwise not in accordance with the law. She did not. Her decision was entirely rational and fully supported by the record. Thus, the court DENIES petitioners’ motion for review. Pursuant to Vaccine Rule 30(a), the clerk is directed to enter judgment in accordance with this decision.

Very solid decision. The appeal was denied.

Looking back through the document one finds that the Judge noted that the case for MMR causing an injury was clearly not supported, and that the Special Master did not make an error in her decision:

The court finds no error in the special master’s findings. The special master’s conclusion that petitioners did not present a biologically plausible medical theory is clearly supported by the record. She found that the various aspects of petitioners’ theory were not scientifically sound and that the lynchpin of their theory was wholly unreliable. See id. at *87-93 (petitioners’ theory),
116-35 (Unigenetics’ reliability). Next, the special master’s conclusion that petitioners had not established a logical sequence of cause and effect is also supported by the record.

In a statement reminiscent of the Cedillo hearing (first MMR test case) the Judge noted that the medical records show that the “onset of symptoms” did not occur when the petitioners thought:

She [the special master] found that based on the medical records, the onset of Colten’s symptoms did not occur at the time suggested by petitioners.

It is worth reading or skimming the decision. It is a good summary of the case and the evidence presented. I don’t want to quote much more of the document here, with this exception.

Petitioners’ charge–that the special master feared a public backlash against vaccines if she ruled in their favor–is preposterous. There is not a shred of evidence to support petitioners’ claim;70 it rests solely on petitioners’ speculation. Merely because the special master found that petitioners did not carry their burden of proof does not diminish her integrity or render her decision unsupported. Claims of error by a losing party against a decision maker are hardly unusual, but should be grounded in reality.

One thing that bothered me greatly was the implication in the appeals that the Special Masters were acting improperly out of some hidden motive such as trying to protect the vaccine program or fear of public backlash. Sometimes it is difficult for a lay person like myself to understand whether such arguments are expected and “just part of the game” or whether they are attempts to impugn the integrity of the Special Master. I have read enough comments on other blogs to see that many readers are willing to accept that members of the judiciary could act to deny children due process.

I’m glad the Judge in this appeal took the time to respond to these false allegations.

How well do parents accept their child’s ASD diagnosis

12 Aug

ResearchBlogging.orgHow well do we parents come to accept their child’s diagnosis of autism? If you wonder that, you may be interested in this paper out of Israel:

Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics

Resolution, or being resolved, is discussed as:

The process of coming to terms with a diagnosis for one’s child, that is, accepting and feeling resolved with respect to it, is a daunting challenge for most parents.

The authors found that 57% of their sample of parents were unresolved to their child’s diagnosis.

According to the paper, there are six subtype classifications that characterize lack of resolution:

Emotionally overwhelmed parents are those who re-experience the emotions they felt the day they received the diagnosis during the interview.

Angrily preoccupied parents are consumed by anger that they cannot let go (e.g., anger at the doctor who delivered the child or at the person who diagnosed him/her).

Neutralizing parents minimize the effect of the experience and their difficult emotions.

Depressed/passive parents seem sad and depressed during the interview and report having no hope for change in the future.

The cognitive distortions subtype describes parents who have distorted the information or feelings available to them about the child and the diagnosis. For example, they will show an unbalanced perception of the child, describing only her/his positive qualities, or will adopt an unrealistic view regarding the
child’s abilities and future.

Disorganized/ confused parents seem confused and incoherent and find it difficult to construct a narrative regarding the experience of receiving the diagnosis.

My guess is that Warrior Moms wouldn’t see themselves as falling into any of those categories. I would further guess that the researchers might not agree with the warrior mothers.

Back to the paper. How are the parents they studied fall into the categories?
Figure 2 (click to enlarge) from the paper shows how the unresolved parents fell into the different categories.

resolved_figure_2

The largest fraction of unresolved mothers were in the “emotionally overwhelmed” category, while fathers were split mostly between “emotionally overwhelmed” and “neutralizing” categories.

A couple of observations I found interesting.

First, naively, I would expect that the ability to “resolve” would be related to how “severe” the child’s autism is. This is not the case:

Our study also replicates past findings regarding the lack of association between maternal resolution and the diagnosed child’s characteristics including gender, chronological age, severity of symptoms, mental age, and daily living skills.

A second observation: I would also naively expect that parents would “resolve” more over time. Not true. By comparing their results to another recent study, the authors conclude that time doesn’t appear to help in achieving resolution:

The maternal resolution rates found in the current study are quite similar to those presented by Oppenheim et al. (2009), even though the mean duration of time since receiving the diagnosis was much longer in the current study (4 years and 4 months) compared to that in the first study (1 year and 10 months). This finding suggests that resolution status is not associated with the duration of time that elapsed since the child was diagnosed, at least for the time range included in the current study.

Parental resolution was not associated with age, gender or time since diagnosis for the child. Neither was it associated with financial impact or impact on siblings. Association was found for mothers in some areas:

Our hypothesis regarding the association between resolution and the impact of raising a child with a disability on the family was confirmed for mothers only. Compared to resolved mothers, unresolved mothers reported a higher perceived negative impact of the diagnosed child on some aspects of family life such as the family’s social life and negative feelings about parenting and marriage.

Full text of the paper is available as pdf.

My guess is that many will greet this study with some variation of “I won’t resolve to autism; I won’t give up”.

Resolution is not giving up. Resolution is accepting the reality of you and your child’s situation. Resolution does not mean one doesn’t fight to improve your own life or that of your child.

The authors conclude the paper with what many would see as an important observation (if not one covered by the study itself):

Rather, within the constraints of the child’s disability, parents may play an important role in shaping their relationships with their child and his/her well-being. Thus, interventions focused on enhancing parental resolution are needed in order to optimize the well-being of all family members.

Milshtein S, Yirmiya N, Oppenheim D, Koren-Karie N, Levi S. (2009). Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics. Journal of Autism and Developmental Disorders : DOI 10.1007/s10803-009-0837-x

Moving Toward a New Consensus Prevalence of 1% or Higher

12 Aug

When I first started reading autism blogs, I was very impressed by many of the writers on what has become the Autism Hub. Amongst them, Joseph of the Natural Variation – Autism Blog.

There are a lot of armchair epidemiologists in the autism world. Joseph has always impressed me with his careful and thorough approach.

One blog post of his is where I got the title for this post: Moving Toward a New Consensus Prevalence of 1% or Higher. That post impressed me then. It impresses me even more now.

Take a look at that blog post. It is from February of 2007. Here’s a line from his intro:

The current consensus prevalence of ASD is roughly 1 in 166 or 60 in 10,000, as widely known. I believe this is still an underestimate.

Here’s a later paragraph:

Nevertheless, it appears that when ASD is screened thoroughly in a population, or when there’s a lot of awareness and good ascertainment, prevalence is found to be closer to 1%. This is not new. The following is what Lorna Wing and David Potter said on the subject as early as 1999.

Why bring it up now? Because Joseph is (once again) proven correct. The “new” consensus is about 1% or more.

The National Survey of Children’s Health shows about 1% of children aged 2-17 currently have an Autism or Asperger Syndrome diagnosis. The rumor mill has it that the CDC will release a report with about 1% soon as well.

Anyone surprised? At the least, is anyone surprised that the “official” numbers may be going up? It has been long recognized and discussed that the “official” CDC numbers are an under estimate. The regional variations alone show that to be the case (with the autism “rate” varying by about a factor of 3 between Alabama and New Jersey).

Again, lifting liberally from Joseph’s blog post: he quotes Lorna Wing and David Potter from…1999. Yep. 10 years ago.

Because we concentrated on the children with learning disabilities (IQ under 70) we saw very few with the pattern described by Asperger. We had to wait for the study by Christopher Gillberg in Gothenberg to find out how many children with IQ of 70 and above were also in the autistic spectrum. As described above, combining the results of these two studies gave an overall prevalence rate for the whole autistic spectrum, including those with the most subtle manifestations, of 91 per 10,000 – nearly 1% of the general population.

and,

Kadesjö et al (1999) report a study in Karlstad, a Swedish town. Although this was small scale it was very intensive (over 50% of the 7 year old children seen and assessed personally by the first author). The study found a prevalence for all autistic spectrum disorders for all levels of IQ, of 1.21%!!! Children were followed up four years later and had the diagnoses confirmed.

Joseph also listed the following studies in his post:


About 1% of children in the South Thames region have an autistic spectrum disorder

and


Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations by E. Fombonne, et al.. This 2006 study showed 1.076%.

More recently, we have the study by Simon Baron-Cohen’s group that showed a prevalence about 1.5%

At the time that I started reading autism blogs there was a recurring theme. Every three months the California Department of Developmental Services would publish their latest data. Rick Rollens would put out comments for the press and David Kirby would blog it, both concluding that the data showed evidence of an “epidemic”. As I recall, one quarter there were simultaneous claims of “See the autism rate went up, there’s an epidemic” and “see the autism rate went down, there’s an epidemic”. Every quarter, bloggers like Jospeh, D’oC and Prometheus (and others) would debunk the claims of epidemic.

Little has changed except that the CDDS isn’t publishing quarterly reports. Now we have more infrequent reports on autism prevalence, so we have to do the debunking less often.

The real question here is whether the prevalence of autism is really increasing. It is a very good question. It just isn’t one that we can answer with the data we have. That won’t stop people from claiming they have proof of an “epidemic”.

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