Rotenberg Update

Previous posts have discussed abuse at the Judge Rotenberg Center in Massachusetts.

The Canton Citizen reports:

In testimony submitted to the U.S. Food and Drug Administration, state Senator Brian A. Joyce has requested that the agency ban the use of all graduated electronic decelerators (GEDs), or skin shock devices, which are currently being used to administer electric shocks to disabled children at the Canton-based Judge Rotenberg Center.

The FDA had notified the center in May 2011 that alterations made to the devices required FDA approval. After the JRC failed to adequately respond to the notice, according to Joyce, the FDA sent a second letter in June 2012. When the JRC again failed to comply, the FDA sent a third notice in December 2012, calling for a meeting between the two sides to ensure that the facility ceases use of the non-compliant devices.

Joyce, a longstanding critic of the JRC and its practices, submitted testimony requesting that the FDA forbid the school from using the GED devices on their students from this point forward.

From the Autistic Self-Advocacy Network:

The Alliance to Prevent Restraint, Aversive Interventions, and Seclusions (APRAIS), in collaboration with ASAN and other disability advocacy organizations, has drafted the following letter to the Office of Special Education and Rehabilitative Services, as well as the Centers for Medicaid and CHIP Services and Medicare and Medicaid Services.

As many of our organizations have made numerous requests in the past related to our concerns for the health, safety, and welfare of the young people in the care of the Judge Rotenberg Center in Massachusetts, the undersigned write to you with a renewed call for action; the immediate and complete cessation of funding for the Center considering the US Food and Drug Administration’s recent Warning Letter dated December 6, 2012.

The FDA’s letter dated December 6, 2012—the third warning letter to the Judge Rotenberg Center in 19 months—cites the Judge Rotenberg Center for violations of FDA regulations due to its ongoing modifications to the Graduated Electronic Decelerators. These modifications have consistently increased the allowable voltage used to shock patients. In the hands of Judge Rotenberg Center staff, these GED devices deliver brutal electric shocks to young people. It is important to note that the Judge Rotenberg Center is not only the only facility in the United States to use such a device; the Judge Rotenberg Center is also the sole manufacturer of this machine.

A Potentially Controversial Contribution

The Autism Society will be getting a contribution from a controversial source. A press release:

On January 20th, 2013, leading cigar provider TrueTobacco.com will be donating the proceeds from every blunt the company sells to the Autism Society of America. If you're an aficionado of these popular round tip cigars, mark your calendar.

Throughout 2013, TrueTobacco will be supporting the efforts of many of the national and international organizations that make a positive difference in our lives. On each one of the company's designated Days of Service, one nonprofit will be the beneficiary of all proceeds made that day through the sale of one of TrueTobacco's popular line of products.

"We believe in giving back," says TrueTobacco general manager Nick Gordon. "We couldn't have achieved the high level of success we have if we didn't have a community rooting for us. We're rooting for our community as well. Of course, if you're an Internet business, your community has a broader geographic base."

Why might this particular contribution be controversial?  From HHS:

Tobacco exposure during pregnancy is harmful to a baby. A new study finds that it may increase a child’s risk of having certain forms of autism spectrum disorder, or ASD.

Researchers looked at 600,000 pregnancies from areas included in the U.S. autism surveillance program of the Centers for Disease Control and Prevention.

Amy Kalkbrenner is at the University of Wisconsin-Milwaukee Zilber School of Public Health.
“For those children that had high functioning autism, there did appear to be somewhat of a signal between maternal smoking and pregnancy and that risk of autism.”

Women should not smoke while pregnant and should avoid exposure to second-hand smoke.

It’s estimated that one in every 88 children has some form of ASD.

The study is in the journal Environmental Health Perspectives.

Learn more at healthfinder.gov.

Insurance Legislation in Oregon and Minnesota

Autism Speaks reports:

Autism Speaks today formally endorsed S.365 , the 2013 Oregon autism insurance reform bill, which would require insurers to cover the screening, diagnosis and treatment of autism.

Sponsored by Senator Alan Bates (D-Medford), the bill requires that insurance policies cover the screening, diagnosis and treatment of autism the same as they do for physical illnesses. It would apply to state-regulated health plans for individuals and small groups. It would also create a state licensing process for ABA practitioners.

In Rochester, Minnesota, the Post-Bulletin reports:

The push to require insurers to cover this care has the strong support of two Rochester lawmakers — Assistant House Majority Leader Kim Norton and Sen. Dave Senjem. Norton introduced a bill four years ago to require insurance companies to pay for prescribed autism therapies. The bill has repeatedly stalled, faced with opposition from insurance companies and business groups that argue such a mandate would drive up health care costs. But the Rochester Democrat is optimistic that the bill will clear the DFL-led Legislature this session and notes more than 30 other states have already passed similar legislation.

Norton said she will also push to have autism therapy coverage be part of the state's essential benefits set under the Affordable Care Act. That is the basic amount of coverage that insurance plans have to offer in order to sell insurance as part of an online state health insurance exchange that takes effect in 2014.

Mike Hickey, a lobbyist for the National Federation of Independent Business, said the group will fight the proposal. He said the requirement unfairly targets small business owners who rely on these state-regulated insurance plans while larger employers who are self-insured are exempt.

"It's very expensive and obviously there is a really compelling need, but the fact that we are doing this to struggling small businesses and not covering the Fortune 500 companies is just an inequity we cannot swallow," he said. "That this would be crammed down our throat and not the Mayo Clinic's health plan? It's unbelievable."

Not all business groups oppose the legislation. Rochester Area Chamber of Commerce President John Wade said his organization differs with the state chamber and supports the mandate after studying the issue and the impact autism has on families. Wade has offered to testify in support of Norton's bill at the Capitol.

More Misreporting of the Optimal Outcome Study

Media outlets continue to botch coverage of an important study. Hannah Rosin writes in Slate: "This morning’s New York Times points to an intriguing study ostensibly showing that some small percentage of people with autism can `outgrow' their symptoms."

Wrong:  the article says no such thing, and in fact says just the opposite. “These people did not just grow out of their autism,” the Times article quotes lead study author Deborah Fein. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.”

Even worse, the Slate headline reads: "Can We Really `Cure' Autism?" The study does not use the word "cure" and only mentions "recovery" in the context of quoting others.

Misreporting the Study of Optimal Outcomes

A previous post described a study showing that some kids with ASD eventually lose the diagnosis.The study is available here.

The press has not always handled autism responsibly, and a number of news reports are inaccurately describing the study:

• BBC:  "While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism."
• Fox News:  "New research has found that some children diagnosed with autism actually ‘grow out’ of their symptoms – as well as their diagnosis – when they grow older, BBC News reported."
• US News and World Report: A new study published in the February issue of the Journal of Child Psychology hints that children diagnosed with autism could grow out of the disorder...The autistic children's original diagnoses were accurately reported, researchers found, leading them to believe that these children may have grown out of their disorders, or perhaps were compensating for their autism-related struggles, reports the BBC. 
• UPI headline: Study: "Some with autism 'outgrow it'"
• RTT News: "Some children may actually grow out of autism says a new study from researchers at the University of Connecticut."

The study does not use terms such as "outgrow" or "grow out of," which would suggest that the process is automatic, like losing baby teeth.  The New York Times quotes lead author Deborah Fein:

Dr. Fein emphasized the importance of behavioral therapy. “These people did not just grow out of their autism,” she said. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.” [emphasis added]

Why point out misleading language in news reports?  Very few readers are going to read the NIMH release, much less  the original study.  They will see terms such as "outgrow" and may develop the false hope that the problems associated with autism will just go away by themselves.  An editorial in the same journal urges appropriate caution:

Opening the dialogue on optimal outcomes and using the word “recovery” as a possible outcome must be done responsibly. It cannot detract attention from those who do not fall in this group, those who make less progress than hoped or achieve much smaller gains. How are these children different? How do child characteristics interact with treatment characteristics to foster the best outcomes? Broderick (2009) cautions against a “binary conceptualization of hope” (p. 270) that represents outcomes other than optimal ones as tragic and hopeless. She suggests that other optimal outcomes include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms. Hope for recovery as the only hope would be not only shortsighted, it would be unethical.

 

The Vaccine Schedule

The Institute of Medicine reports on the vaccine schedule:

Upon reviewing stakeholder concerns and scientific literature regarding the entire childhood immunization schedule, the IOM committee finds no evidence that the schedule is unsafe. The committee’s review did not reveal an evidence base suggesting that the U.S. childhood immunization schedule is linked to autoimmune diseases, asthma, hypersensitivity, seizures, child developmental disorders, learning or developmental disorders, or attention deficit or disruptive disorders.

Existing mechanisms to detect safety signals — including three major surveillance systems of FDA-approved products maintained by the CDC and a supplemental vaccine safety monitoring initiative by the FDA—provide further confidence that the current childhood immunization schedule is safe.

Despite the reassuring available evidence, the committee calls for continued study of the immunization schedule using existing data systems.

Answering research questions of the most importance to stakeholders could be done through a variety of methods. The committee does not endorse conducting a new randomized controlled clinical trial that would compare the health outcomes of unvaccinated children with their fully immunized peers. Although this is the strongest study design type, ethical concerns prohibit this study, as unvaccinated individuals and communities intentionally would be left vulnerable to morbidity and mortality. While stakeholder concerns should be one, but not the only, element that drives continued searches for scientific evidence, the committee writes that these concerns alone, absent epidemiological or biological plausibility of potential safety problems, do not warrant further study.

A new observational study, a complex undertaking that also would require a considerable investment, would be less likely than a randomized controlled clinical trial to conclusively reveal differences in health outcomes between children who are fully immunized and unimmunized children. Fewer than 1 percent of Americans refuse all immunizations. Enrolling sufficient numbers of unvaccinated children and matching them with vaccinated children of the same age, gender, ethnicity, and geographic location — a necessary step to rule out chance findings — would be prohibitively difficult and time-consuming.

NIMH Study: Some Lose the Diagnosis

Is it possible for ASD people to "recover" or lose the diagnosis?  Some have questioned this idea, or at least suggested that recovery is very rare.  Research on outcomes is surprisingly scant, but a release from the National Institute of Mental Health discusses an important new study:

Some children who are accurately diagnosed in early childhood with autism lose the symptoms and the diagnosis as they grow older, a study supported by the National Institutes of Health has confirmed. The research team made the finding by carefully documenting a prior diagnosis of autism in a small group of school-age children and young adults with no current symptoms of the disorder.

The report is the first of a series that will probe more deeply into the nature of the change in these children’s status. Having been diagnosed at one time with an autism spectrum disorder (ASD), these young people now appear to be on par with typically developing peers. The study team is continuing to analyze data on changes in brain function in these children and whether they have subtle residual social deficits. The team is also reviewing records on the types of interventions the children received, and to what extent they may have played a role in the transition.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes,” said NIMH Director Thomas R. Insel, M.D. “For an individual child, the outcome may be knowable only with time and after some years of intervention. Subsequent reports from this study should tell us more about the nature of autism and the role of therapy and other factors in the long term outcome for these children.”

The study, led by Deborah Fein, Ph.D., at the University of Connecticut, Storrs, recruited 34 optimal outcome children, who had received a diagnosis of autism in early life and were now reportedly functioning no differently than their mainstream peers. For comparison, the 34 children were matched by age, sex, and nonverbal IQ with 44 children with high-functioning autism, and 34 typically developing peers. Participants ranged in age from 8 to 21 years old.

Prior studies had examined the possibility of a loss of diagnosis, but questions remained regarding the accuracy of the initial diagnosis, and whether children who ultimately appeared similar to their mainstream peers initially had a relatively mild form of autism. In this study, early diagnostic reports by clinicians with expertise in autism diagnosis were reviewed by the investigators. As a second step to ensure accuracy, a diagnostic expert, without knowledge of the child’s current status, reviewed reports in which the earlier diagnosis had been deleted. The results suggested that children in the optimal outcome group had milder social deficits than the high functioning autism group in early childhood, but had other symptoms, related to communication and repetitive behavior, that were as severe as in the latter group.

The investigators evaluated the current status of the children using standard cognitive and observational tests and parent questionnaires. The optimal outcome children had to be in regular education classrooms with no special education services aimed at autism. They now showed no signs of problems with language, face recognition, communication, and social interaction.

This study cannot provide information on what percentage of children diagnosed with ASD might eventually lose the symptoms. Study investigators have collected a variety of information on the children, including structural and functional brain imaging data, psychiatric outcomes, and information on the therapies that the children received. Analysis of those data, which will be reported in subsequent papers, may shed light on questions such as whether the changes in diagnosis resulted from a normalizing of brain function, or if these children’s brains were able to compensate for autism-related difficulties. The verbal IQs of the optimal outcome children were slightly higher than those with high functioning autism. Additional study may reveal whether IQ may have been a factor in the transition they made.

“All children with ASD are capable of making progress with intensive therapy, but with our current state of knowledge most do not achieve the kind of optimal outcome that we are studying,” said Dr. Fein. “Our hope is that further research will help us better understand the mechanisms of change so that each child can have the best possible life.”

Reference

Fein D, Barton M, Eigsti IM, Kelley, E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K. Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry DOI: 10.111/jcpp.12037. Project Number: R01 MH 076189

New Genetics Research

A release from Children's Hospital of Philadelphia:

Genetics researchers have identified 25 additional copy number variations (CNVs) -- missing or duplicated stretches of DNA -- that occur in some patients with autism. These CNVs, say the researchers, are "high impact": although individually rare, each has a strong effect in raising an individual's risk for autism

"Many of these gene variants may serve as valuable predictive markers," said the study's corresponding author, Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics at The Children's Hospital of Philadelphia. "If so, they may become part of a clinical test that will help evaluate whether a child has an autism spectrum disorder."

Hakonarson collaborated with scientists from the University of Utah and the biotechnology company Lineagen, Inc., in the study, published January 14 in the journal PLOS ONE.
...
These findings, said Hakonarson, could be incorporated into clinical tests for evaluating children for ASDs. "These high-impact variants could be most useful in advising parents who already have one child with an ASD," said Hakonarson. "If a second child has delays in reaching developmental milestones, testing for these CNVs could help predict whether that child is also likely to develop an ASD." He added that the newly identified variants would need to be added to the existing commercially available diagnostic array in current use.

Treatments Without Evidence

In Research on Autism Spectrum Disorders, Johnny Matson and colleagues ask: "Why are there so many unsubstantiated treatments in autism?"  The abstract:

The number of interventions used in the field of autism is astronomical. Unfortunately, while there are effective and well-researched methods, many of the techniques that parents use have no empirical support. These interventions are expensive, take up valuable time, and in some cases are dangerous. How bad is this problem, how did the field get here, and what are potential solutions? This review covers this important but infrequently discussed topic.

Highlights

► Large numbers of treatments in widespread use have little or no research support.
► There are a number of factors that appear to be driving this very disturbing trend.
► The gap between the evidence base and the use of unsubstantiated treatments appears to be growing.
► More emphasis on establishing guidelines, enforcing professional standards, and disseminating information is needed.

What are some unsubstantiated treatments?

 Parents gain information from many sources. Testimonials, parent groups and acquaintances, and especially the Internet are rich sources of misinformation. Often an impetus to seek these alternative methods is the lack of satisfaction and/or ineffectiveness of treatment. One common method is complementary and alternative medicines such as special diets, special vitamins, animal therapy (e.g., petting dogs, riding horses, etc.), chelation therapy, craniosacral therapy, music therapy, and  secretin. Estimates are that 32–92% of parents use one or more of these methods for their children with ASD. Additionally, it has been reported that 62% of parents shared their use of one or more of these methods with their child’s primary care doctor (Wong & Smith, 2006). These treatments are expensive, require a great deal of time and effort, are often dangerous, and they have not been proven to be effective. Davis and colleagues (2013) reviewed the available research on chelation therapy, for example, and concluded that the evidence supporting its effectiveness is extremely weak. Likewise, Lang and colleagues (2012) reviewed the studies published on sensory integration therapy and concluded that agencies that use research or scientific methods should not use this treatment. Similarly disappointing results have been noted for gluten-free and casein free diets (Mulloy et al., 2010).

Alexis Wineman

On the strength of an online vote, Alexis Wineman made it to the semifinals of the Miss America competition, becoming the first ASD person to do so. Digital Journal reports:

Prior to the start of Saturday's competition, Wineman tweeted:

"I hope I make those who has been cheering me on during this journey proud tonight. There are no words to express my #gratitude."

She not only made her supporters proud, she served as an inspiration to many, being named the America's Choice winner. She moved on to the semifinals along with 14 other contestants, competing in the swimsuit competition. Sadly, when the 12 finalists were announced, Wineman's name was not included.

Wineman continued to show her courage, perseverance and gratitude however, saying:

"I can't believe it! I won America's Choice. Thanks to all of you voting for me & supporting me!"

With the pageant now behind her, Wineman plans to continue her education, attending the University of Montana with hopes of a career in art therapy. She also hopes that her story and her personal platform helps everyone remember that "normal is just a dryer setting"
.

ABA and Insurance in Oregon

Previous posts have described policy in Oregon. OPB reports:

In November, Kaiser Permanente issued a statement saying it is now providing ABA services for members with a medical need.

Tobi Rates is the executive director of the Autism Society of Oregon. She says it was welcome news, "We applaud it," she said. "We're thrilled about it. We want the other insurance companies to follow along."

The state has two laws that she says should require insurers to cover ABA therapy -- the 'Mental Health Parity Act' and the' 'Developmental Disabilities Act.'

But she says, there's a catch, "Between those two, it says if you're covering mental health issues, you have to include developmental disabilities, and that includes autism. It doesn't specifically say how you have to cover the autism therapies or what therapies you have to cover."

Hence the current situation where some companies cover ABA, while other's don't.
Kaiser did not make anybody available for an interview with OPB. But the problem for the company now is that if other insurers don't also start offering coverage, Kaiser could end up attracting lots of expensive new customers with autism. That would drive up their costs.

...

The Oregon Insurance Division is thinking about it. Spokeswoman Cheryl Martinis says the division is seeking advice from attorneys at the Department of Justice, "We've asked them whether ABA therapy is required under current Oregon law, and if so, under what circumstances. ... So we're awaiting some guidance."
...
State Senator Alan Bates, a doctor from Medford, is working on a bill that would create a certification system for ABA therapists. It would also get ABA included in insurance coverage, and establish which children should receive the therapy.

He says it's understandable why insurance companies want a certification process, "A lot of the work is something it doesn't take a lot of education for, but takes a lot of time and you don't want to be paying someone $100 an hour for doing something that could be done for $15 an hour with the same outcome."

He says if a bill is to pass, he needs parents and insurance companies to come to some agreement.

If they don't, he says, he won't take a proposal to the floor because it simply wouldn't survive.

Study of Bullying

Previous posts have discussed the impact of bullying on ASD children.A release from the Kennedy Krieger Institute:

Nearly 70 percent of children with autism spectrum disorders (ASD) experience emotional trauma as a result of being bullied, according to findings published today in the Journal of Developmental & Behavioral Pediatrics, while a significant portion were concerned for their own safety at school. The study also found that children with ASD who presented with pre-existing psychiatric diagnoses were at increased risk for involvement in bullying, with children diagnosed with ASD and attention deficit hyperactivity disorder (ADHD) or depression at highest risk of being victimized over a one month period. This study was led by researchers from the Interactive Autism Network, a project of the Kennedy Krieger Institute that is the nation’s first online autism registry with participants from 47 states, making it the largest collection of autism data in the world.

“Recent research indicates that children receiving special education services are at risk of being victimized at higher rates than regular education students,” says Dr. Paul Law, senior study author and director of the Interactive Autism Network at Kennedy Krieger. “Our findings show that not only are these children being bullied more, but they are also experiencing significant short-term, and likely long-term, effects of being bullied.”

Participants in the study included parents of 1,221 children with ASD recruited through an online questionnaire. Researchers utilized the Bullying and School Experiences of Children with ASD Survey, a 63-item questionnaire, to collect key data from parents regarding their child’s school environment, involvement in bullying, and the child’s educational and psychological functioning. Additionally, researchers used the Parent Observation of Child Adaptation (POCA) to reflect parents’ ratings of their child’s behaviors and level of psychological distress after a bullying incident. The study’s findings on the characteristics and psychiatric comorbidities most associated with bullying are below.

Kasich Signs Directive

In Columbus, WCMH reports:

Autism advocates refer to it as their Christmas miracle – the day Gov. John Kasich announced he would sign an executive order mandating insurance coverage for autism services. Kasich gathered with supporters Wednesday to celebrate with a ceremonial signing of the new directive.

Opponents of the new policy argue the mandate will increase insurance premium costs for business owners and the Tea Party sponsors of Ohio’s 2011 Health Care Freedom Amendment now say the new mandate also violates the Ohio Constitution.

For many parents, the autism diagnosis can provide some relief after months, or even years, of not knowing what was wrong. Then they're confronted with the reality that their insurance does not cover the expensive but necessary treatments.