Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81.

The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81 figure, the article relies on a chart made up from data from public school districts around the country. (You can see the chart here via a parent’s website.) The parent of an autistic child, Dan Hollenbeck, arrived at this figure by finding the number of cases of autism services provided by each state’s public schools and then dividing this by the number of children enrolled. The figures that Hollenbeck arrived at provide an idea of how many children who are classified under the code of autism are receiving services in school districts across the US. But, it should be noted that school districts around the country vary in how they classify children as needing to receive services for autism, and services and programs for autistic children in public school vary widely from state to state (and within states—that’s certainly the case here in New Jersey–between rich and poor school districts, for instance). More than a few children classified under the autism code wouldn’t be diagnosed with autism if a full diagnostic assessment was done.

Further, Hollenbeck is the Director of Technology at Thoughtful House, an Austin-based center which is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” Dr. Andrew Wakefield (the figure at the center of the MMR-autism controversy) is on the research staff of Thoughtful House, which says that we are “in the midst of an epidemic of developmental disorders that includes autism, Asperger’s Syndrome, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive development disorder (PDD), and nonverbal learning disorder (NLD). And, Hollenbeck and his wife, Laura Hewiston (the researcher behind a certain infamous poster presentation on monkeys and vaccines) are listed as litigants (see #437) in the Autism Omnibus proceedings in which some 4800 families are claiming that vaccines injured their children and causes them to become autistic.

In other words, there is some motivation for Hollenbeck to offer data that suggest that the rates of autism have risen “epidemically,” and especially due to vaccines or something in vaccines. (And, CityPages needs to make a few clarifications about the data that it is using.)

The 1 in 81 figure suggests that educators in Minnesota are very aware about autism and about providing services for children. And that’s certainly also the case in New Jersey which, according to Hollenbeck’s figures, has 1 in 115 children with autism, which is rather counter to the CDC’s 2007 figures, and rather counter to what the “Jerseyan in the street” would tell you about autism here. Down here at the shore on Tuesday morning, my son Charlie got over-stimulated in a bakery—chock full of vacationers and display cases—-and someone who is probably the owner appeared from the back; he has an autistic grandson. (We’d always noted a collection jar for autism events on the counter.) Last week, there was a young autistic man in the waves with his father every day, and this week there’s a boy a bit older than Charlie. And there’s Charlie himself; when we tell the lifeguards about why it’s so hard for him to understand about “swimming flag to flag,” saying “autism” is pretty much all that needs to be said. Back home, there’s our school district which has a quite high rate of autistic students compared to the overall total of students—-because it’s a district with a very strong autism program and also special education services, and many families (like us) have moved to it for that reason.

No discussion of autism rates among students (and no discussion of the so-called “autism epidemic“) is complete without keeping in mind Washington University Paul Shattuck’s 2006 article on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” in which he found that, as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. George Washington University anthropologist Roy Richard Grinker’s 2007 book Unstrange Minds: Remapping the World of Autism further explains how historical and cultural factors have led many to feel and even to believe that there is an epidemic of autism, in no small part due to our better understanding of autism, broadened and refined diagnostic criteria, and a huge increase in public awareness. There’s more and more research going on about the causes of autism: The August 19th KQED has a report on northern California researchers who are studying the causes, especially environmental ones , of autism. A blog details a video report, which can be seen here. Researchers are studying seemingly everything from dirty diapers to carpet dust in an effort to find if there are any “risk factors” that an expecting mother might encounter, that might be linked to her having an autistic child.

Having gone from Minnesota back to Jersey by way of California in this post, I have to note that we’ve connections to all three of these states. Charlie was diagnosed in Minnesota, has receive most of his school education in New Jersey (Jim’s native state), and I’m California born and bred, and there’s no question that, in all of those states (and in Missouri, where Charlie was born), we’ve encountered many autistic children. But then the chicken or egg question arises: Is the increase in autism is due to something specific that can be pointed to, something external and in the environment; or is it because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students)?

We’ve got the technology to measure Michael Phelps winning his seventh gold medal by .001 of a second—surely we’re better able to count cases of autism?

Over at Primary Source in an August 1st post, Sharyl Attkisson discusses the case of Hannah Poling and says that “it’s the first time we know of that the government has ‘conceded’ an autism case in vaccine court.” Attkisson then writes:

But CBS News has learned the government has previously been court-ordered to pay on other vaccine injury cases in which a child ended up with damage including autism or autistic symptoms [my emphasis]. In one case from 1986, the child had a pre-existing condition that the court decided was aggravated by his vaccinations. Here, the pre-existing condition was “tuberous sclerosis” or TS. According to court testimony, many children with TS will suffer seizures and brain damage. However, the longer they can go before having their first seizures, the better off they are. In this case, the court listened to scientific evidence on both sides and determined that the child’s DPT shot* probably triggered his seizures, perhaps earlier than they would’ve otherwise occurred. At first, the government agreed to pay for the child’s seizure medication but refused to compensate for his autism and mental retardation saying they were caused by the TS rather than vaccines. However, not unlike the government’s concession in Hannah Poling’s case, the court found that vaccines aggravated the child’s pre-existing condition, and were therefore responsible for his mental retardation and autism.

CBS News is, it seems, catching up to what’s already been reported on the internet and specifically the autism blog community. Earlier this year, on March 11, Kathleen Seidel reported on the Neurodiversity weblog that there have been at least nine instances in which compensation for a vaccine injury has been provided for under the Vaccine Injury Compensation Program (VICP).  The case that Attkisson refers to seems to be this case, as noted by Seidel:

Suel v. HHS (Case 90-935V, 1997 U.S. Claims LEXIS 210, September 22, 1997)

DPT vaccine administered in the 1980’s.

Aggravation of tuberous sclerosis in a child diagnosed with autism.

Richard Gage, counsel for petitioner; Laura Millman, Special Master

As Seidel writes, “the autism diagnosis followed the development or aggravation of profoundly disabling physical conditions.” She briefly lists the eight other cases in which families were awarded compensation. Hannah Poling receiving compensation is, as Seidel states, “in fact, not news at all.”

Good to know that others are catching up on the “not-so-hidden history” of the VICP.

As advertisers and networks have been dropping Michael Savage’s show in the wake of his infamous comments (here’s a list of 20 audio clips), here’s an email he sent to The Hook (Virginia):

The drug companies are very powerful and have worked very hard to silence any voice critical of the misdiagnosis of our children and the drugging of vulnerable minds. Sad the station manager is such an ignorant man.

Seems Savage is trying to portray himself as the misunderstood defender of so many poor misdiagnosed, “vulnerable [minded]” children and so offers up this defiant attempt parting shot. Guess a simple apology’s too hard.

Talk Radio Network has announced that it will not be firing Michael Savage in the wake of his incendiary comments about autism. From the press release:

Dr. Savage has clarified that his July 16th statements concerning autism were not directed at those who are in fact challenged by this horrible affliction, but were instead addressing efforts to broaden the concept of autism beyond those who truly are autistic to a broader “autistic spectrum” of behavioral symptoms which are also manifested by persons who do not suffer from autism, and his concern that many children are being misdiagnosed as autistic due to the subjective nature of autism diagnosis (due to the lack of known biomedical indicators, such as blood tests, to definitively confirm or deny the actual existence of autism).

Dr. Savage has also explained his belief that there have been efforts by certain professionals and professional organizations to expand diagnoses of autism more broadly, for various reasons, and his concern that this victimizes and stigmatizes children who are misdiagnosed as autistic. On multiple other occasions Dr. Savage has expressed his concerns that other conditions, such as ADD and ADHD, are overdiagnosed and result in improper medication of young children, which Dr. Savage regards as abusive.

In the context of his broader concerns, it is clear that Dr. Savage’s comments were intended to suggest his opinion that, in the vast majority of cases, most children throwing tantrums, or refusing to communicate, are not autistic. Unfortunately, by condensing his multifaceted concerns into 84 seconds of commentary, the necessary context for his remarks was not apparent, and the few words he used to express his concerns were, in this instance, inartfully phrased.

Oh yeah, I get it. If only he could explained his views in 84 double-spaced pages in Times Roman 12 point font instead of those 84 seconds—but I somehow I the message would be the same, as I noted here.

An online petition calling for Talk Radio Network’s sponsors to “consider whether or not to associate with the
hateful and offensive comments” by Savage is here.

So I finally got around to reading Michael Savage on the Autism Controversy after grading papers, going swimming with Charlie and explaining to the water aerobics teacher why the boombox was contributing to him looking mighty distressed and since the class was over maybe it could be turned off?, making Charlie’s lunch, overseeing him practice cello, searching for the Leapster (not necessarily in that order). Yes, I know you’ve all read it, blogged it, rolled your eyes over it, read too many websites inveighing over the mean-spiritedness of remarks. Here’s Savage being called the most hated man in America (what better way to get, if not sympathy, attention?). Here’s AFLAC Just Saying No to advertising on Savage’s show. Here’s Salon on protesting parents and Savage self-defending.

Swimming, searching for lost new toys, folding, making, driving: These activities offer ample time (especially when there’s an overturned tractor trailer on the highway) for reflection, and this part of Savage’s original comments was on my mind:

Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden — why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.

I was once a minority child with asthma, though I don’t think I’m the kind of “minority” Savage is referring to. And while I would have to, at least in part, agree with him that autism has become something like the “illness du jour”—who doesn’t know about it, or know someone with a child with it, these days?—-I don’t think, or rather I know, that my understanding of autism is not the same as Savage’s. (Well, you knew that already.) Reviewing Savage’s The Autism Controversy comments, his main point (remember, I’m grading papers and I’m in looking-for-thesis statement mode) is that autism is being “overdiagnosed,” that some poor kids are being “falsely diagnosed,” are indeed being “victimized” by being “diagnosed with an ‘illness’ which may not exist, in all cases.” Oh, the poor bamboozled parents thinking their kid has the “disease du jour” and, in truth, in order to figure out what their brat of a kid really has, those parents need only look in the mirror, and see the actual cause of said brattiness in their kids. It’s you, buster, it’s you lazy and lousy parents! You’re doing a rotten job and that is why, ipso facto, you have rotten kids.

Well.

It’s either fascinating, or discouraging, or infuriating to find the “bad parents cause autism”—-the refrigerator mother theory of autism, or “Freudian analysis” according to the Executive Director of Autism United—invoked so baldly today. As Emily pointed out, the savagery of Savage’s remarks seems to be, sadly, reflective of the sentiments of more than a few anonymous commenters about Adam Race and Alex Barton.

Savage’s main point seems to be that kids today are being over/falsely/wrongly diagnosed with autism instead of just getting the “this is some rotten kid” label; he thus suggests that the significant increase in the prevalence rate of autism over the past decade (it’s now 1 in 150)—that the so-called autism epidemic—is because of over-diagnosis and that “99 percent” of autistic kids just aren’t. (They’re just bad.)

One hopes that Savage might, at some time or other (especially as he is, as he noted, the “brother of a severely disabled person who suffered and died in a New York ’snake-pit’ of a ‘mental hospital’”), get educated about autism, what it is, and why the prevalence rate is up; about why people feel that there’s an “epidemic of autism,” and why the rising prevalence rate is due to the confluence of a number of factors, including the broadening of the DSM criteria for autism, physicians being better able to identify autistic children, parents knowing more about autism, children receiving an autism diagnosis who might before have been given one of mental retardation or something else, a cultural climate in which it’s less of a stigma (unless you listen to Savage’s show) to be disabled.

These and a number of other factors for the so-called autism epidemic are discussed in a July 21st ABC news interview on autism diagnoses skyrocket with Roy Richard Grinker, the author of Unstrange Minds: Remapping the World of Autism. An anthropologist, Professor Grinker also talks about his research on autism in South Korea. When South Korean children are screened for autism using the same diagnostic tools as are now used in the US, the prevalence rate is about the same, 1 in 150.

Professor Grinker  also speaks about his teenage daughter Isabel, and about how important it was for him and his wife to turn from focusing so much on what she could not do (as compared to other children) and focused on her strengths.

Focusing on strengths.

Maybe what most infuriates me about Savage’s remarks on autism is that he speaks only of deficits and “kids being bad,” of kids who have problems and who are problems. And, in doing so, he is not able to see where the real problems are, namely, in limited perspectives like his own that see only “the problems” and not the great kids who learn to make their way in a world that, so often, does not want them. That likes to make fun of them.

And if you go to ABC, it’s not this (Savage) video to watch, but this one, about truly understanding autism.

Dr. Antonio Hardan, the director of the autism clinic at Stanford’s Lucile Packard Children’s Hospital, says this in a July 9th ABC Local (Bay Area) report about increases in autism diagnoses throughout the region:

“If you are diagnosed with autism you will get more services from the county from regional centers than if you just have an attention deficit hyperactivity disorder or depression.”

90 percent of Bay Area schools reported a rise in children with autism between 2005 and 2007, with Santa Clara County having nearly eight autistic kids per 1,000 students—-note that this figure is not about an actual increase in the number of children diagnosed with autism, but in the number of autistic children reported by school systems. Washington University professor Paul Shattuck has found that the number of children with an autism spectrum disorder diagnosis increased at the same time as the number of children receiving diagnoses of mental retardation and learning disabilities decreased (here is the study in the 2006 Pediatrics).

In my own experience, I’ve heard more than a few parents talking about getting an autism diagnosis rather than one for Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), as an autism diagnosis is more “severe” and can lead to more services. Since Charlie was diagnosed with autism in July of 1999—-nearly nine years ago—I seem to have heard fewer parents saying that their child has PDD-NOS. I’ve rather heard references to “mild autism,” “classic autism,” “severe autism”—-terms that can seem precise to a user, but which still need qualifications.

Johanna Jaeger, whose 14-year-old son Alex is autistic, is also quoted about what is behind the increase in the ABC Local report:

“Parents don’t make this stuff up to say, ‘oh gosh, I can’t wait to get into that system.’……….You know it’s not a club that most parents look forward to joining.”

It’s a sort of chicken and egg question, perhaps, whether or not you think the increase in autism is due to “something” specific that can be pointed to, something external and in the environment—-or whether it’s because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students).

It seems that everyone with a young child is concerned about detecting “signs of autism.” Certainly I’ve noted parents of toddlers in the wading pool taking a good look and listen to Charlie and then glancing back at their own child (and looking visibly relieved at times; so it goes). With more tests being developed to look for autism in infants, more children may be diagnosed or be put in the “possibly maybe wait and see” category. And if your child is autistic, parents so often find that a diagnosis — a label — can seem just a bunch of letters, some of which might provide more services than others.

35 years ago, the only reason we went to San Jose was to visit a now-defunct amusement park, Frontier Village (think bears in overalls with corncob pipes). San Jose meant farmlands and orchards and dusty streets, not “high-tech corridor.” I didn’t know anyone with autism or what autism is. I wasn’t looking: Was anyone then?

The autism epidemic commeth — or, more accurately, it goeth. The threat of such a terrible scourge—–lots of children with autism—is behind the calls for “safer vaccines” and “change the schedule!” by anti/pro-safe vaccine rallyers at Wednesday’s Green Our Vaccines (which acronyms nicely into GOV) rally. Get out those toxins, change that schedule, flush that mercury out of those shots and don’t let it get into our kids’ bodies: If we don’t do this, we’re doomed, untold numbers of still-normal toddlers and yet-to-be-born (and even conceived) children could become……..autistic…….if we don’t so something about those shots, and then we’ll have more autism than anyone can handle or pay for…….

This is apocalyptic and scaremongering language typical of arguments for a link between vaccines and autism. Yes, there are more children diagnosed with autism and states and school districts report big increases—-but these increases in the prevalence rate of autism always need to be considered in view of the changes in the very definition and in people’s understanding of what autism is. The diagnostic criteria for “autistic disorder” were significantly broadened with a revision of the DSM-IV in 1984. The rates of autism diagnosis increased from 1994-2003—and, as Professor Paul Shattuck has found, the rates of diagnoses of mental retardation and learning disabilities decreased in the same time period.

Claims of an autism epidemic are based very much on what people feel: Because they’re hearing more about autism, and because more people are talking about autism, and because more children are being diagnosed with autism, people have been saying “epidemic!”. Clinicians, educators, and parents have a better understanding of autism and are better able to detect it and, while some bystanders can get that nervous look when you say your child is autistic, the shame and stigma that parents used to experience when it was believed that they caused autism—the refrigerator mother theory—-has lessened.

There is, one could say, an epidemic going on—-a figurative “epidemic” of understanding and awareness about autism. I’m not so sure my own son would have been diagnosed with autism in previous generations; he would probably have received a diagnosis of “mental retardation” and “emotional/behavioral disorder.” But now I can say he has “classic autism” and people know what I mean. How can you measure a change in knowledge?

And so goeth the claims of an epidemic of autism—the June 6th Times (UK) has an article entitled “The autism epidemic commeth, which heralds the publication of a book entitled Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker, who is also the father of a teenage girl with autism, Isabel. The book was published in January 2007 here in the US and started off something of a storm of discussion about whether or not there is an autism epidemic. Prof. Grinker says no, as noted in this January 2007 interview in Time magazine.

But that’s only some of what Unstrange Minds is about: Prof. Grinker looks at autism at other times, carefully tracing the evolution of “autism” in the DSM, and in other places (India, South Korea, and South Africa). The book provides much needed historical and cultural background and context behind the current interest—some might say fascination—-with autism.

Personally, the main reason I like the book (I’ve referred to it here from time to time, and first reviewed it here) is for the story of the diagnosis, education, and growing up of Prof. Grinker’s daughter, Isabel, and for his own account of the effect of all this on himself and his family. Much as I strive to know as much as I can about research, treatments, and the latest issues regarding autism, it’s the personal stories of autistic individuals, parents, teachers, and others that I’m most drawn in by. Whatever you might think about the “autism epidemic” and about vaccines, Prof. Grinker’s account of his daughter is more than worth reading.

Theories commeth and goeth, and good stories about great kids growing up endure.

To read an article about the MMR vaccine and autism in today’s Telegraph, you’d think there was plenty of reason for the “debate” to be “reignited” thanks to Senator John McCain talking about an “autism epidemic”; recent statements about US health officials being too quick to dismiss arguments about vaccine as a cause of autism by Dr. Bernardine Healy; the case of Hannah Poling, in which the government conceded that vaccines “aggravated” an underlying mitochondrial disorder in Hannah and led to symptoms of autism; and a recent poster presentation at IMFAR about a study in which 13 vaccinated monkeys showed “increased aggression, impaired cognitive skills and developmental delay” after receiving vaccines.

Here’s what the Telegraph article doesn’t note:

Sen. McCain was widely criticized by scientists about his comment that the increase in autism is due to vaccines.

There is a lot of uncertainty and even controversy over how common mitochondrial disorders are in autistic children. In the case of Hannah Poling, it’s necessary to note that the government did NOT concede that vaccines cause autism.

The poster presentation is by Laura Hewitson, who (along with her husband, Dan Hollenbeck) is a petitioner in a Vaccine Injury Compensation Program. (And bloggers Larry Arnold and Mike Stanton comment on the notion of “conflict of interest.)

Though when journalist David Kirby speaks on June 4th in the UK, these things may not be mentioned: This American invasion of further evidence for the MMR/vaccine-autism debate is a lot less bullet-proof than the Telegraph suggests.

Mike Stanton of Action for Autism provides some more information and background behind Kirby’s visit to the UK.

I never got around to making a list of last week’s top posts last week so here’s two weeks of “top posts” about autism. Rather than arrange them in chronological order, I’ve arranged them by topic:

My son Charlie turned 11 last Thursday, on May 15th. Life on the road with Charlie is my constant theme here and these posts are about his sensory sensitivities, his beloved bike rides with his beloved dad, and other things I’ve been learning on our journey. (In the photo, he’s enjoying a birthday dinner of sushi and cake on Jim’s desk.)

• Too High-Pitched to Hear
  It was a couple of months ago that my son Charlie started—for the first time in his life—to show sensitivity to sound by putting both hands over his ears.
• The Final (Bike Riding) Frontier
  Learning to use the gears is—as Jim proclaimed when he and Charlie came home after bike ride #2—the “final frontier.” Who knows what hills and mountains await?
• Back in the Swim
  Charlie goes for a swim in the pool at Saint Peter’s College in Jersey City.
• Parenting Isn’t Easy, Period—and I’m Very Glad to Be a Mother
  On Mother’s Day, an essay by Robert Hughes in today’s Chicago Tribune is entitled What Autism Means to a Father.
• Statements to the IACC (and what happened on Monday)
  Statements to the Interagency Autism Coordinating Committee by Paula Durbin-Westby and myself.
• The Ides of May
  Happy Birthday to Charlie on his 11th birthday!

Several posts about science and research, causes and treatments:

• Biomed, Anecdotal Evidence, and Thoughtful House
  Whether or not to try biomedical treatments is a question that’s perhaps unavoidable for parents with an autistic child today.
• Autism and Parents with Psychiatric Disorders
  The risk of having an autistic child is doubled if a parent has schizophrenia or if a mother has psychiatric problems (depression, personality disorders), according to a study published in Pediatrics.
• The Puzzling Spectrum of Autism Causes
  What do TV, ultrasounds, insufficient vitamin D, air pollution, a mother having the flu while pregnant, mercury, have to do with each other?
• Just When You Thought You’d Heard Every Possible Treatment for Autism…
  …..here’s another one to add to the list.
• Charges Dropped Against Dr. Roy Kerry
  Charges have been dropped against Dr. Roy Kerry, the Pittsburgh-area doctor who was accused of causing the death of 5-year-old Abubakar Tariq Nadama.
• The Gluten Free Frenzy
  How many people have been telling you that they may be intolerant to gluten?
• Antipsychotics in Kids, Weight Gain, and Parental Worries
  A new study on the use of antipsychotic medications in children indicates that taking these drugs results in an almost immediate increases in body mass index (BMI) and triglyceride levels.
• Everything Causes Autism (Or So it Seems)
  What hasn’t been cited as a cause of autism?
• Genes Linked to Social Impairments
  A new study in the May 15th Biological Psychiatry has found genetic links to the “impaired social behaviors”; of autistic children.
• Regressive Autism and a Test for Babies
  Researchers at McMaster University in Canada have developed a new test that can, it is said, detect signs of autism in babies as young as 9 months old and I suspect that this test might have detected “something” in Charlie when he was that age.

Some posts about autistic adults and employment, services, and places to live.

• Symposium on Employment for ASD Adults
  Some great advice in this comment from a job developer/job coach for adults with disabilities, and the father of an autistic son.
• Where Are All the Autistic Adults?
  The British government has announced that it is planning to calculate the number of autistic adults in England, but the tools for diagnosing autism in adults are neither as valid nor as reliable as those used for children.

The vaccine issue, inevitably:

• Yes, the Vaccine Question Again
  Another round of “vaccine court” begins on Monday, May 12, with the case of William Mead and Jordan King.
• “Open Questions” about Autism, and Vaccines, and Much More
  CBS News correspondent Sharyl Attkisson interviews Dr. Bernardine Healy, a former head of the National Institutes of Health and a member of the Institute of Medicine.
• Paul Offit on Hannah Poling and the VICP
  In the May 15th New England Journal of Medicine, Dr. Offit revisits the case of Hannah Poling in light of the recent history of the Vaccine Injury Compensation Program (VICP).

Some recurring issues: Is there a real increase in autism—what do you if your child stomps and jumps and you live in a second-floor apartment—how do you take an autistic child to church—do you still feel any shame and stigma when people learn that your child, or you yourself, is/are different?

• The So-Called Autism Pandemic
  The term “autism pandemic” strikes me as a not exactly subtle attempt to make the rise in the prevalence rate of autism seem to be much more extreme, and scary,
• Stigma and Pride
  More people with severe forms of mental illness such as schizophrenia and bipolar disorders are now speaking out about their “demons” as part of “Mad Pride.”
• Oregon Family Wins Discrimination Case
  An Oregon family has won a $40,000 settlement from a Portland, Oregon apartment owner and management company.
• Autism and Faith: A Journey into Community
  Autism and Faith: A Journey into Community is a new resource for clergy, religious educators, and families of autistic children to develop “inclusive spiritual supports” for autistic individuals in religious settings.

In The “Open Question” on Vaccines and Autism, CBS News correspondent Sharyl Attkisson interviews Dr. Bernardine Healy, a former head of the National Institutes of Health and a member of the Institute of Medicine. Noting that Dr. Healy’s credentials “couldn’t be more ‘mainstream’”—no DAN! doctor she—Attkisson writes:

According to Healy, when she began researching autism and vaccines she found credible published, peer-reviewed scientific studies that support the idea of an association. That seemed to counter what many of her colleagues had been saying for years. She dug a little deeper and was surprised to find that the government has not embarked upon some of the most basic research that could help answer the question of a link.

The more she dug, she says, the more she came to believe the government and medical establishment were intentionally avoiding the question because they were afraid of the answer.

Why? Healy says some in the government make the mistake of treating vaccines as an all-or-nothing proposition. The argument goes something like this: everybody gets vaccinated at the same time with the same vaccines or nobody will get vaccinated and long-gone deadly diseases will re-emerge. (When I asked about cases of brain damage resulting in autism that have been quietly compensated by the government in vaccine court over the years, one government official recently told me that “it’s still better overall to get vaccinated than not to get vaccinated.”)

Healy says the argument need not be framed in those terms (vaccinate or don’t vaccinate). Instead, she says, we should vaccinate, but work to do it in the safest manner possible based on what we know and what we can find out.

Healy calls for a “personalized medicine” approach to vaccination, in which children would be screened so that we would know who might be “more susceptible to vaccine side effects”; such children would be vaccinated on a “more personalized schedule that is safer for them.”

This is not the first time that Dr. Healy has expressed concerns about the vaccine schedule and the “safety” of vaccines: Back in April, she wrote Fighting the Autism-Vaccine War in US News and World Report. According to Healy, the medical literature of 40 and 50 years ago is already “replete with reports of neurological reactions to vaccines, such as mood changes, seizures, brain inflammation, and swelling” and it is thanks to the efforts of “doctors, researchers, and yes, families,” that “sacred medical dogma” (including the “universal vaccine strategy”) is being challenged.

Attkisson writes that “the government continues to frame the conversation in all-or-nothing, ‘one-size-fits-all’ terms”: It seems that, just as autistic children have IEPs or “individualized education plans,” so is there a desire among some for children to have “individualized vaccine schedules.” Attkisson notes that parents of autistic children have told her that they want children to be vaccinated in the “safest manner possible.” It’s a little hard for anyone to disagree with such a statement. Nonetheless, Attkisson (in this particular CBS news piece) refers to the parents she has talked to as if they stand for the opinion of all parents of autistic children, and they do not. This is a presumption that Attkisson has made made before. As I’ve written, my husband Jim and I do not believe that vaccinations caused our son to be autistic and we’re not alone in believing this.

I’ve also noted before that it is unfortunate that so much energy is exerted in discussing the hypothesis that vaccines might be linked to autism and to “vaccine safety,” especially when issues such as employment and housing for autistic adults are real and pressing. Attkisson does refer briefly to the latter towards the end of her article:

………..look down the road a little. Millions of autistic children will - in the not-too-distant future - outgrow their parents, or their parents will no longer be able to care for them. Their only option in many cases is institutionalization. Who, but a parent or family member, can and would devote the moment-by-moment attention it takes to raise an autistic child? Our nation has not, to my knowledge, begun to build these institutions, or figure out how to pay for them.

“Their only option in many cases is institutionalization?”

Well, it is an option for some individuals. But it would be good for Attkisson to note efforts to find housing in the community, in group homes and supporting living environments, for autistic adults. (A film called The Key of G and the Friends of Children with Special Needs Dream Center in Fremont, California, are two places to start learning about such options.)

“Who, but a parent or family member, can and would devote the moment-by-moment attention it takes to raise an autistic child?”

Indeed, yes—-some autistic children and, yes, adults, require constant, one-on-one care and there are some things that only parents and family members will do on a 24/7 basis. But there are many individuals out there who want to be teachers, therapists, job coaches, and more for autistic children and adults, and who choose this work over other options. My son is turning 11 this week and, ever since he was diagnosed just around his second birthday in 1999, there have been numerous, numerous–the proverbial armada—therapists and teachers (mostly college-age, some older; most women, more and more men) who have spent hours with him and who have done possible thing to help him.

Just today I spoke about working in an autism school to a young woman at my college. And just today, a former therapist’s husband sent me an email announcing the birth of their first child: I told Charlie and he went through the list of his therapists’ names, adding the word “baby” after each (I had to correct him in a couple of instances).

It will be interesting to see how the latest chapter in the epic that the “vaccine court” has become will play out. Expect to hear words like “facts” and “truth” and “proof” and “evidence” frequently used in reference to claims of an autism-vaccine link. And since we’re talking about “facts” and “truth,” let’s hope that the truth about life with autism can be represented in its full light. Yes, it’s not easy; yes, families struggle, autistic children have lots of challenges and life can be pretty tough some times. But autism is not some death sentence, under which a child is going to live out her or his days in an institution that no one wants to pay for: Life with autism is itself an “open question,” a story whose end we don’t know, as each individual is writing it—living it out—in his and her own, unique way.

And those are the stories that I’m most interested in hearing about.