Autism Vox

May 17th, 2008

JRC Records Seized by State Police

This past Thursday in Virginia, a 24 year old autistic man was tazered by James City County police after he was to “become unruly with employees at Wilsons Leather at the Prime Outlets-Williamsburg shopping mall,” according to the Daily Press. It was only after the man was placed under arrest and charged with trespassing and resisting arrest that police learned that he had Asperger’s Syndrome.

Needless to say, incidents like these make training about autism for police and other first responders more than essential. The Daily Press quotes a James City Police spokesman, Mike Spearsman, as saying that the 24-year-old man was “‘rather large’”—-these are words that strike home with me more and more.

Almost every day someone comments to me that Charlie is “so big” or says “he’s taller than you!”. The words are meant kindly but, in practical terms, Charlie’s height and size (he’s the biggest in his class but the youngest in age), combined with his limited speech and communication skills (especially to strangers, especially when he’s under duress), can make people who don’t know him uneasy, even when he’s simply sitting on the subway and does not respond quickly enough when someone asks him to move over. It’s been some time since Charlie got very, very upset in public; it helps that we work a lot on teaching him to manage his anxiety and how he responds to it.

In the past, when Charlie got very upset and aggressed—not out of wanting, I have to emphasize, to hurt anyone, but because that was the response of his body under extreme stress, a kind of “fight or flight” response—personnel at a previous school placement had been instructed to use physical restraints to stop the behavior. What usually happened was that Charlie struggled more (especially when a basket hold was used) and things escalated. And, Charlie started to make it clear that he did not want to go to school: There were many occurrences of those types of physical struggles, phone calls from nurses and principals, bruises and tears. (At one point, Charlie threw his shoes out of the car window as I drove him to school—-a pretty clear message.)

That was a few schools and households ago and Charlie’s had his best school year ever. His teachers and therapists are trained in crisis management procedures and it always seems that the tallest aide (a guy) is assigned to Charlie, but it’s very, very rare that any sort of physical force has to be applied. Careful and highly structured teaching and carefully training, highly motivated staff have made all the difference for Charlie.

So it troubles me all the more to read about how often physical violence and force are used to “treat” or “discipline” autistic and disabled individuals. One of the most egregious examples is the use of “aversive therapy”—electric skin shock transmitted by a device called the Graduated Electronic Decelerator. A school in Canton, Massachusetts, the Judge Rotenburg Center (JRC), uses this highly controversial “therapy.”

Some parents swear that it has made all the difference in their children’s lives and theirs. Derrick Jeffries, who has Asperger Syndrome, and University of Delaware professor Nancy Weiss have started an online petition to call on the American Psychological Association to condemn the JRC’s shock therapy and other “aversive” treatments. In December of 2007, more questionable practices at the JRC were noted in an article by the Boston Globe. Back in January, a key legislative committee in Massachusetts considered a bill to decrease the use of shock treatment. A state investigation into the JRC was called after an August 2007 incident, in which a former JRC student made a prank phone call to administer shocks to two students. The May 15th Boston Globe reports that State Police were ordered to seize documents from the offices of the JRC related to that prank phone call:

The collection of evidence has to do with a yearlong grand jury investigation led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

JRC officials say that they have issued “numerous safeguards” to prevent the August prank call from happening again:

The incident was caught on 24-hour surveillance tapes, which were shown to investigators last summer. The tapes were subsequently destroyed by school officials, even though investigators had instructed them to preserve the tapes.

After hearing about the destruction of the tapes, Senator Brian A. Joyce, a Democrat from Milton who has sought to ban shock therapy at the school, said he intended to ask the attorney general’s office to look into the matter.

More analysis at Club 166.

Charlie was able to tell me that he wanted out of his former school by throwing his shoes out the car window. But would a JRC student do, if they had minimal or no language or communication skills do?

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By Kristina Chew, PhD -- 0 comments

May 16th, 2008

Sorry Fido, No Bath For You

Bathe your pet in flea shampoo while you’re pregnant and you are twice as likely to have an autistic child, according to new research to be presented today at the International Meeting For Autism Research in London (scroll down on this link, past the report on how baby bottle chemicals can sentence a child to a life of obesity).

No pets in our house (Charlie is much more easy-going around dogs these days, but still wary). But what about the therapy dogs?

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By Kristina Chew, PhD -- 2 comments

May 16th, 2008

About This Vaccine Issue: Previous Posts

With another round of vaccine court going on this week, the question of whether there’s a link between vaccines and autism is again getting a lot of discussion. Here’s five past posts on this blog  that suggest how this one hypothesis about the cause of autism has become entwined in debates about research, the understanding of what autism is, and much more. Much, much more.

1. The Vaccine-Autism Urban Myth (February 6, 2007)
2. Myth, Science, and a Trial: Vaccines and Autism (June 30, 2007)
3. Thoughts on Autism Research (July 2, 2007)
4. The New McCarthyism (October 28, 2007)
5. The Case of Hannah Poling (March 6, 2008)

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By Kristina Chew, PhD -- 3 comments

May 16th, 2008

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. The 52-page guide was developed by the Autism and Faith Task Force of COSAC, New Jersey’s main autism organization, and the Elizabeth M. Boggs Center on Developmental Disabilities, which is in the Department of Pediatrics at UMDNJ-Robert Wood Johnson Medical School. More about the guide:

The Task Force worked for more than two years collecting stories and experiences from families, best practices and strategies from clergy and human service professionals, and resources from around the country.

The guide features more than fifteen short articles written by clergy, parents, professional experts on autism, religious educators and people with autism, illustrated by numerous sidebar stories and examples from families who shared their experiences, both positive and negative, with their own faith communities in New Jersey. It is interfaith, including examples from Christian, Jewish, Hindu, and Muslim communities.

There’s also some first-person accounts by autistic individuals.

The guide was edited by Mary Beth Walsh, PhD, and Alice Walsh, MDiv (both of whom are parents of autistic children) and Bill Gaventa, MDiv. Mary Beth Walsh and Bill Gaventa also spoke at the 2006 conference on Autism and Advocacy at Fordham University that my husband, Jim Fisher, put together. (Video clips of the conference can be seen here and provide more insights into the work of “inclusive spiritual supports.”)

A number of the guide’s sections feature practical suggestions for including autistic children and adults in religious settings, such as seeking out a family-oriented service where a little noise is not uncommon; familiarize your child with the physical space of the sanctuary; use concrete language and visual aides when instructing a child; make a point of introducing yourself and your child to your religious leader before attending a service.

Jim and I contributed an essay to the guide, “Autism: Presence & Justice.” The essay is mostly Jim (he’s a cultural historian of religion) and much less of me. (As in, much, much less.) Here’s the last paragraph of the essay, which puts the issue of including autistic individuals in religious settings into a broader framework:

……the inequality of educational opportunities for persons with autism is not simply a matter of public policy, but social justice. This disparity closely mirrors inequalities of economic status, which in turn are often grounded in legacies of racial inequality and de facto residential segregation that relegates persons who are cognitively disabled and poor to substandard educational programs. Everyone in the autism community knows just how unequally distributed are these vital and indispensable educational services, from early intervention to classroom teaching to vocational training. These inequalities are further evident from delayed diagnoses to inadequate services that can lead to physical harm done to autistic persons or members of their families. The fundamental inequality of autism services—and the demeaning competitive scramble into which most families are driven—call for action grounded in moral and religious convictions on the dignity of all human persons.

The guide can be ordered via the Boggs Center (the first copy is free for residents of New Jersey); theDaniel Jordan Fiddle Foundation provided support for the project.

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By Kristina Chew, PhD -- 4 comments

May 16th, 2008

Regressive Autism and a Test for Babies

Here it was Charlie’s birthday yesterday (thank you for so many good wishes!) so I’ve been in something of a super-reflective mood: How was this tall boy once curled up inside me? How have we managed to help him through the years and some very tough moments? He’s 11 years old now and memories of Charlie’s 1st year have been flashing in my mind. He was a big, dark-haired baby with long limbs that flailed around and a big head, and, from the time he was born, he often looked out of the corners of his eyes.

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. The test measures the directions of babies’ eyes when they look at faces, eyes, and bouncing balls on a computer screen. From CTV.ca:

[Leader researcher Mel] Rutherford, an associate psychology professor, says the test is “not at all invasive.” The eye-tracker camera sits on a table in front of the child and collects data from eye movement for 10 minutes.

She believes that this is a way to measure how engaged babies are with their environment, which is a marker for normal development.

“It gives us the hope that we will some day be able to say for certain that an individual baby is developing with autism or not developing with autism as early as nine months,” Rutherford told CTV Newsnet on phone from London, U.K.

Researchers have found that children who are developing normally pay attention to people’s faces and engage in eye contact. However, children with autism don’t focus on the eyes, or don’t look directly in the face at all.

“I can do this in 10 minutes, and it is objective, meaning that the only measure is eye direction; it’s not influenced by a clinician’s report or by intuition. Nobody’s been able to distinguish between these groups at so early an age,” Rutherford said in a statement earlier.

At 10 months, Charlie’s pediatrician wrote that he had a minor delay in gross motor ability: He had just started to roll over and sit up unsupported, and he didn’t crawl. (She attributed this to my being too over-protective.) We didn’t take a lot of videos of Charlie but there is one when he was around 9 or 10 months and his gaze is not on other people, or the camera; it’s not really clear what he’s looking at. So, in Charlie’s case, this eye test might have provided a helpful clue.

It’s also clear that I’m talking an awful lot in the video; I suspect I sensed, unconsciously, that Charlie was not developing “normally.” This became much more apparent when, some months later, Charlie was in daycare and he was clearly not like the other children, and not just because he didn’t have any words. He showed initial interest in a few toys and then only the slide and the CD player. One of his main interests was the big silver square button with the blue disability symbol; Charlie pushed it over, and over, and over again to open up the door (the daycare center director was at first amused and then something less than that). It was very painful to see how Charlie was so different from the other children in the daycare but I suspect it was from seeing this that we knew early on that Charlie had “something.” He had just turned two years old when he was diagnosed with autism in July of 1999.

Since Charlie’s development was always not “normal,” it would not be accurate to say that he has what is being called “regressive autism” by the lawyers for the families of William Mead and Jordan King, whose cases are being heard in the most recent “vaccine court.” Kev at Left Brain/Right Brain has been looking at the arguments the petitioners’ lawyers will be using and the views of their expert witnesses. One of those witnesses, Dr. Sander Greenland, is a professor of epidemiology at the UCLA School of Public Health and professor of statistics, UCLA College of Letters and Science. From reading Prof. Greenland’s expert report (go to this post and scroll down to see a PDF file of the submitted report), Kev notes in Petitioners suggest new prevalence:

the figures Petitioners are talking about represent a sub-group of regressive autism he terms ‘clearly regressive autism’ ………….And of course regressive autism itself is a sub group of autism. According to Greenland, the figures are:

Regressive autism: 28% of autism1.
Clearly regressive autism: 20% of regressive autism
Therefore, clearly regressive autism: (approx) 6% of autism

Now, when we translate this to what the vaccine hypothesis believers like to call ‘proper’ autism (by which I assume they mean classic/low functioning) we get this:

Classical/LF autism: 33% of ASD (based on Fombonne data again).
So, ‘clearly regressive autism’ is 6% of 33% of ASD.

Or in other words, Petitioners ‘clearly regressive autism’ accounts for approx 2% of all ASD.

If you read Prof. Greenland’s report, you’ll note these statements as these regarding regressive autism:

Fombonne (2007, paragraphs 37-39) as argued that most children with regressive autism display subtle developmental abnormalities before the disease is diagnosed, and that (as with other forms of autism), regressive autism likely has a genetic basis. These hypotheses do not however rule out environmental or medical triggers of regressive autism, and in fact are quite compatible with the existence of such triggers (Lainhart et al., 2002).

The argument that most children with regressive autism have pre-existig abnormalities actually implies that clearly regressive autism is very uncommon…….

As of this writing (August 2007) I am aware of no peer-reviewed controlled epiemiologic study of MCV [mercury-containing vaccines] and regressive autism per se; all studies identified failed to separate regressive autism from other types of autism.

Because the currently published evidence cannot rule out a very small association of MCV with autism in general, it cannot rule out an association of MCV with regressive autism, even one large eough to correspond to a risk ration of 2.

If we can put aside the issue of autism and vaccines for the moment (or to another post, like this one): It seems that defining and arguing for the specificity of “regressive autism” and of “clearly regressive autism” will be key for this latest round of “vaccine court.” It will be crucial to prove that William Mead and Jordan King were “normal” in their development and all else, and it will also be crucial to show (or to make it seem) that the “onset” of signs of autism in both children coincides their receiving vaccinations.

As Sullivan reminded us in a comment yesterday, autism is currently classified as a “developmental disorder” and “that is why it is limited to children who show some signs before age 3.” Children diagnosed with autism are not (by definition) developing in the normal, expected ways; they are not gaining skills at the same rate as other children and perhaps their development does not follow a progressive course and some skills that they seem to have, they do not have at a later date. This can be seen as a “regression” and I suspect it will be featured as part of “regressive autism” as argued by the petitioners’ lawyers.

But is it possible that “regressive autism” is a term that seems to specify a particular “type” of autism, but is really just stating what autism in young children is? A child is referred to Early Intervention services because he or she is not talking, or walking, etc. at the times that most children do. “Autism” implies some kinds of delays and differences in development, and these can be seen as regressions, or they can also been as atypical, unusual different ways to develop.

The Special Master in the “vaccine court” has requested to see videos as evidence in the proceedings. It will be interesting to find out what is said about eye direction and the sorts of eye movements that the McMaster University researchers are looking for.

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By Kristina Chew, PhD -- 21 comments

May 15th, 2008

Oregon Family Wins Discrimination Case

An Oregon family has won a $40,000 settlement from a Portland, Oregon apartment owner and management company. Daniel and Jenny Sanchez claimed that Princeton Property Management, Inc. refused to accommodate the needs their of three-year-old autistic son. From press release from the US Department of Housing and Urban Development:

The Sanchezes alleged that Princeton Property Management, Inc., refused to grant the family’s request to move to a vacant first-floor apartment to mitigate noise complaints about their autistic son that the company received from a tenant who lived directly below the family. The family also alleged the property managers refused to renew the family’s lease, which they had in several previous years, and issued a 30-Day Termination of Tenancy Notice. The property managers also failed to act on the Sanchezes’ request to extend the termination date, forcing the family to vacate on the same day the mother gave birth to a second child.

In addition to the $40,000 payment to the Sanchezes, the owners and managers of the property will donate $2,500 to an autism group and $2,500 to a designated early childhood development center in the family’s school district. The agreement also requires employees of the management company to attend fair housing training.

We live on a second-floor condo and are considering moving to a first-floor one, so this case hits home in more than a few ways.

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By Kristina Chew, PhD -- 13 comments

May 15th, 2008

The Ides of May

It’s Charlie’s 11th birthday today. I had asked his teacher about bringing in a cake and she said that would be great, but could we do it on May 14th, as she was planning to be at an autism conference on the 15th? Sure I said and made plans to leave early on Wednesday so I could get to the bakery (cake in the house = cake found and eaten by Charlie, so best to buy it at the last minute).

Of course, I could barely drag myself away from my college campus. It was nearig 1.20pm when I turned right onto Routes 1 & 9, which were backed up (in fact, someone did a U-turn in the middle of the road on seeing the traffic ahead). I went up the on-ramp at the Broadway exit of the Pulaski Skyway and the car in front of me made a U-turn in the middle of the on-ramp when he saw the standstill traffic ahead. I went on and may as well have parked my car: No on was moving on the Skyway.

I figured there my be an accident and so we sat. And sat. And inched onward a bit, and sat and inched. I called Charlie’s school and asked to have his teacher told I wasn’t going to make it: Apparently Charlie has been talking non-stop about “birthday cake” and my parents, Gong Gong and Po Po (Cantonese for maternal grandfather and maternal grandmother)—in fact, when I was at Charlie’s cello lesson on Tuesday, the aide told me that Charlie had been talking about all of that over and over and had had a rough morning.

“It’s birthday anxiety,” I said.

“What?” said the aide.

I explained how, starting when he was 7, Charlie got so anxious about his birthday—about having the cake, and the party, and my parents coming, and everything—-that he once kept saying “birthday cake” so many times and so loudly that he became hoarse, cried, and head-banged. He would be happy during the party, and then tense, and then miserable. So we started to do the “very lowkey birthday” with the cake and presents and a small party, but with minimal build-up and mild hoopla.

This year I thought of doing something for Charlie’s classmates—maybe bowling or at the pool—but Jim and I wondered about the logistics and each child’s particular needs. So we decided that a school birthday party would be nice and then I made plans to take Charlie to California in June between the end of school and the start of Extended School Year, and my parents are planning to have a big birthday with my family at their house. (Yes, this way I don’t have to worry about all the cooking and cleaning and everything else……)

But yesterday I wasn’t even sure I was going to make the school party, up there in the Skyway as we inched forward in the warm spring sun. Finally, finally, somewhere over Kearney, I sighted police car lights, on more than a few police cars—one of which, I saw as I got closer, was on a tow truck as its back end was quite smashed in. A beat-up red car was nearby, looking even more beat up. There were firetrucks (keep in mind, the Skyway is a 2-lane bridge each way, with no shoulder to speak of) and then we got past them and everyone started racing away.

I made it to the bakery and also found a can of soy whipped cream—-why not. I hurried through the busy main street of a suburban New Jersey town and then onto the highway and then I realized, I could make the party! I got to Charlie’s school at 2.37pm (school ends at 3pm) and ran for the main office (tucked away into a side of the building), rang the buzzer, signed in, put on a nametag, and hurried to Charlie’s room. He was outside with an aide—most likely riding a bike, with the aide running after him (yes, the aide’s a good runner)—and Charlie’s teacher got out plates and a plastic knife and her camera.

Charlie came in with a big smile and, on seeing the cake indicated that he was ready to eat. One student had gone out briefly: “Can we wait for him?” I asked.

“Yes,” said Charlie. Another child told me he wanted to talk about Sesame Street. The student we were waiting for came back and then it was 1-2-3 and we sang “Happy Birthday,” Charlie leading. “Cake, cake,” he told me, “brownie cake.” (Yes, it was chocolate.) I cut pieces and the whipped cream was spouted on (”looks like a Ding Dong!” someone said; it did) and Charlie and his classmates ate away. Two boys poked and pushed their plates away, the boy Charlie wanted to wait for ate his, and Charlie had seconds and thirds. (Charlie, as noted, is clearly the tallest, though the youngest.)

It was almost 3pm and everyone started to get backpacks and put in lunchboxes and get ready for the bus. I asked Charlie if he’d like to go home in the black car or the school bus and he said the former; as he stood with his backpack, I tried to open it to put in the leftover cake and whipped cream. “No backpack, no cake, no whipped cream,” Charlie told me. I said fine and assured him he could have more at home, and we bid the teachers and aides bye. Charlie stopped just as we were about to go out the door and took the cake and whipped cream from me and put them in the cabinet, and grinned as he shut the doors. “Bye,” he told everyone.

Julius Caesar was told to beware the Ides of March but I’m think it’s all right to welcome the Ides of May.

Guess I know what Charlie’ll be having for snack at school tomorrow.

I put up a birthday wish for Charlie here.

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By Kristina Chew, PhD -- 23 comments

May 15th, 2008

Paul Offit on Hannah Poling and the VICP

Paul Offit, M.D., chief of infectious diseases at the Children’s Hospital of Philadelphia and professor of pediatrics at the University of Pennsylvania School of Medicine. He is frequently quoted regarding the controversy over a vaccine-autism link; he emphasizes the importance of vaccines for public health. Dr. Offit is, accordingly, not exactly a beloved figure among those who claim that there is a link between autism and vaccines and has even been the recipient of death threats.

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). With the start of  another case in “Vaccine Court” on Monday, Dr. Offit’s essay is certainly timely, though I’m sure he’ll receive merciless “jabs” (may as well use the pun at this point) on the web and elsewhere by those who believe that there is, beyond a doubt, a link between autism and vaccines.

Dr. Offit states that the VICP’s consession to Hannah Poling—that vaccines aggravated her underlying mitochondrial disorder and caused symptoms of autism—-was “poorly reasoned” for four reasons:

1. “…whereas it is clear that natural infections can exacerbate symptoms of encephalopathy in patients with mitochondrial enzyme deficiencies, no clear evidence exists that vaccines cause similar exacerbations.” It is even recommended that children with these deficiencies receive all their vaccinations, as they are especially susceptible to infections.
2. “…..the belief that the administration of multiple vaccines can overwhelm or weaken the immune system of a susceptible child is at variance with the number of immunologic components contained in modern vaccines.”
3. “…although experts testifying on behalf of the Polings could reasonably argue that development of fever and a varicella-vaccine rash after the administration of nine vaccines was enough to stress a child with mitochondrial enzyme deficiency, Hannah had other immunologic challenges that were not related to vaccines. She had frequent episodes of fever and otitis media, eventually necessitating placement of bilateral polyethylene tubes.” As Dr. Offit notes, this is not an atypical medical history for a child; just reading “otitis media” reminded me of my son’s ear tube operation, just over nine years ago.
4. “…without data that clearly exonerate vaccines, it could be argued that children with mitochondrial enzyme deficiencies might have a lower risk of exacerbations if vaccines were withheld, delayed, or separated. But such changes would come at a price. Even spacing out vaccinations would increase the period during which children were susceptible to natural infections,” including such diseases as chicken pox, pertussis, and pneumococcus.

Dr. Offit compares the concession in the case of Hannah Poling to two earlier cases in which “the VICP seems to have turned its back on science”: In 2005, Margaret Althen was successful in claiming that a tetanus vaccine had caused her optic neuritis; in 2006, Dorothy Werderitsch successfully claimed that a hepatitis B vaccine had caused her multiple sclerosis. Even though the scientific literature did not provide evidence of such claims,

VICP ruled that if a petitioner proposed a biologically plausible mechanism by which a vaccine could cause harm, as well as a logical sequence of cause and effect, an award should be granted.

“Plausible” means

“apparently reasonable and valid, and truthful”

—-and apparently reasonable and valid, and truthful, is not the same as something (a hypothesis of autism causation, for instance) being actually reasonable and valid, and truthful. And perhaps this is why the fate of the vaccine-autism link is being tested, and perhaps decided, in the courtroom rather than the lab. If it’s “a logical sequence of cause and effect” that is needed to explain that “biologically plausible mechanism,” those who can construct the most forceful (but not necessarily true) arguments—those who know best to use language to build a case for a purported vaccine-autism link—have something of an advantage. It seems that it is not science that is going to be the decisive factor here, but the power of argument, and, too, of rhetoric.

It is precisely language that is that has become problematic for scientists in disputing the claims of those who contend that there is a link between vaccines and autism. As Dr. Offit writes at the end of his article:

After the Polings’ press conference, Julie Gerberding, director of the Centers for Disease Control and Prevention, responded to their claims that vaccines had caused their daughter’s autism. “Let me be very clear that the government has made absolutely no statement . . . indicating that vaccines are a cause of autism,” she said.5 Gerberding’s biggest challenge was defining the term “autism.” Because autism is a clinical diagnosis, children are labeled as autistic on the basis of a collection of clinical features. Hannah Poling clearly had difficulties with language, speech, and communication. But those features of her condition considered autistic were part of a global encephalopathy caused by a mitochondrial enzyme deficit. Rett’s syndrome, tuberous sclerosis, fragile X syndrome, and Down’s syndrome in children can also have autistic features. Indeed, features reminiscent of autism are evident in all children with profound impairments in cognition; but these similarities are superficial, and their causal mechanisms and genetic influences are different from those of classic autism.

The CDC did not immediately send out a message proclaiming that “this concession does not mean that the government says that vaccine cause autism”: By not sending out such a clear and direct statement, a great deal of debate arose, and is still raging, about the government “conceding” regarding Hannah Poling’s case.

And, as Dr. Offit points out, what exactly is meant by “autism” in regard to Hannah Poling is not entirely clear, due to what is known about her “global encephalopathy” that was “caused by a mitochondrial enzyme deficit.” While she displayed the “difficulties with language, speech, and communication” that are regularly noted as pointing to an autism diagnosis, the causal mechanisms and genetic influences” for those difficulties are “different from those of classic autism,” as Dr. Offit writes. If the level of autism awareness were not as high as it is now, and if autism were not being said to be more and more common, would Hannah Poling still have been said to display symptoms of autism? Or would some other disorder or dysfunction be emphasized?

And, if the VICP had “more rigorously” defined what it means by a vaccine causing harm, perhaps there would not be such grounds for the cases of Margaret Althen, Dorothy Werderitsch, and Hannah Poling. Dr. Offit indeed calls on the VICP to create such criteria, or further risk eroding “public confidence in vaccines and hurt those whom it is charged with protecting.” Dr. Offit is well aware of the popular press’ and the internet’s role in fanning and refueling the flames of vaccine misinformation. A few days ago, Dr. Offit was quoted in the Washington Post as saying

“I think that what’s so endearing to me about the anti-vaccine people is they’re perfectly willing to go from one hypothesis to the next without a backward glance.”

And, it seems, quite willing to change how “autism” is referred to: As Kev at Right Brain/Left Brain has been noting in his coverage of the latest round of “Vaccine Court,” the lawyers for the petitioners and an expert witness have been carefully defining autism into sub-groups such as “regressive autism” and “clearly regressive autism“: Does this mean there is also “unclearly regressive autism” or “clearly progressive autism”?

These shifts in theories of what causes autism can become the basis for new treatments that are said to potentially “cure” autism. For instance, chelation, in which the body is “detoxified” of “heavy metals” and of mercury via medicines and “chelating agents,” is said to be a treatment specifically for autistic children. As Orac points out in a recent post, chelation has also been suggested as a treatment for other conditions, including atherosclerotic coronary artery and peripheral vascular disease. There’s a multimillion dollar “clinical trial” on chelation as a treatment for coronary artery disease being sponsored by the National Center for Complementary and Alternative Medicine (NCCAM); Orac points readers to an article about Why the NIH Trial to Assess Chelation Therapy (TACT) Should Be Abandoned—they don’t, as he writes, call it “cheat-lation” for nothing.

And more and more one wonders if, when the last of the 4900 cases in the “Vaccine Court” has been closed, will anyone feel just a little cheated for having made this their focus.

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By Kristina Chew, PhD -- 19 comments

May 14th, 2008

The Music Says It All

My son Charlie does not simply like music. It’s simply an essential, and natural, mode that he expresses himself with and just something that he enjoys. He did music therapy when he was 2 1/2 years old and enjoyed hearing someone sing and play the piano to him and try to get him to play maracas and bells. But the effort to teach Charlie to actually play an instrument and read the notes has most shown how music is a medium that Charlie is drawn to.

When he was about 6, Charlie singing “Frére Jacques” was a sign that he was agitated and we started to realize that music was something that Charlie uses to communicate his emotions. Under Istvan Molnar-Szakacs of the UCLA Tennenbaum Center for the Biology of Creativity, researchers are conducting the first-ever study to see if autistic children process musical emotions and social emotions in the same way that “typical” children do. Using neuroimaging — functional magnetic resonance imaging, or fMRI—Molnar-Szakacs will explore how autistic children identify emotions in music and how they identify them from other people’s facial expressions:

“Music has long been known to touch autistic children,” Molnar-Szakacs said. “Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children.”

In addition, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy.

……….

In this study, Molnar-Szakacs will use “emotional music” to examine the brain regions involved in emotion processing.

“Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions.”

15 children on the autism spectrum aged 10-13 will be participating in the study.

Molnar-Szakacs also notes that “‘Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions, from cognition to creativity.’” I’d also say that for Charlie (and for me) music is a “powerful tool” to for communicating and for tapping into abilities of Charlie’s, that would otherwise go—yes—unheard.

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By Kristina Chew, PhD -- 6 comments

May 14th, 2008

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. Researchers from Yale University studied six genes “known to be involved in maternal and affiliative behaviors”; they suggest that two neurohormones which are linked to affiliative behaviors in animals, prolactin and oxytocin, are linked to affiliative behaviors characteristic of autism. From Science Daily:

….One aspect of an autistic child’s impaired social abilities is their lack of affiliative behaviors, i.e., behaviors such as touching and hugging that strengthen social bonds……

n this study, Yale University researchers recruited, genotyped, and clinically assessed a large sample of autistic children and their families. They specifically examined the genetic variants in six genes known to be involved in maternal and affiliative behaviors. Dr. Elena Grigorenko, the senior author, discusses their study, “Animal studies have taught us that genetic factors can play a crucial role in the development of close affiliative ties.

“With the help of Yale’s Autism Center of Excellence, led by Drs. Ami Klin and Fred Volkmar, and many families of individuals with ASD, we have registered a possible association between some of the genes identified in animal studies as controlling affiliative behaviors in ASD.” The strongest statistical findings of the study implicate the prolactin gene, the prolactin receptor gene, and the oxytocin receptor gene in these affiliative behavior deficits.

Since he was a baby, Charlie has not been one to shrink from carrying and hugs and physical contact. He does seem very unsure about what sorts of physical gestures and contact to make to other people. He has been learning some, such as how to get someone’s attention when they are not looking at you and can’t hear you. He watches other children (often standing off to the side, looking out of the corners of his eyes) and seems to like to be around them, but rarely (as in never, pretty much) approaches them.

Last night Charlie and I went to the pool and he must have climbed the steps 25 times to go down the water slide. (Well, that’s what it felt like; I go up with him.) There were lots of children of many ages in the pool and we stayed for almost two hours, about twice as long as we usually do. Charlie often found himself splashing near a heavyset boy and the boy’s sister, who was preoccupied in throwing a pink ball to her dad who was sitting on a bench. Charlie was humming as he tends to do amid the noise of the pool and all the swimmers there (including the very competitive swim team) and the other boy seemed to be talking to Charlie, and then imitating Charlie’s underwater athletics, and then observing Charlie. The other boy got out and walked towards the stairs; Charlie got out, told me “I want green slide” and we ascended right on the heels of the other boy.

The other boy sat down to ride the green slide. Charlie walked close to him and tapped him very lightly on the chest, then walked over to the yellow slide, sat down, and both boys (both completely absorbed in the water shooting off the water slie) slid away when the lifeguard gave the word.

I went down the steps with a memory pouring back in: Charlie was 2 1/2 years old and we were walking by the Mississippi River at the end of Summit Avenue in St. Paul. There was a child a few months younger than Charlie and he started to follow the other child around, somewhat to the alarm of the parents who, a little nervously, started to move the stroller away and their child too.

It’s something to see Charlie make contact with another child.

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By Kristina Chew, PhD -- 10 comments