Twenty-Nine States Need IDEA Help

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina Samuels reports at Education Week:

Twenty-nine states and the District of Columbia need some degree of support in meeting the requirements of the Individuals with Disabilities Education Act, according to the U.S. Department of Education's most recent evaluation of state performance.

For the third year in a row, the Education Department evaluated states on the academic outcomes of students 3-21 with disabilities—so-called "results" data—in addition to how well the states met the rules and regulations spelled out in the IDEA.

States were measured on the percentage of students with disabilities participating in state tests and in the National Assessment of Educational Progress, or NAEP; the percentage of students with disabilities scoring at or above basic on NAEP; the percentage of students who dropped out; and the percentage of students with disabilities who graduated with a regular high school diploma.

Twenty-one states were in the category of "meets requirements," an increase of two states from last year. The remaining states were in the categories of "needs assistance" or "needs intervention," each of which comes with some level of increased help or oversight by the department. No state was in the lowest category, "needs substantial intervention."

Transcranial Magnetic Stimulation

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

At NPR, Robin Marantz Henig writes about transcranial magnetic stimulation:

Autism is a developmental disorder that can be disabling, and there's no cure. That makes families uniquely vulnerable to the potential of untested treatment. The fear is that TMS could turn out to be the latest in a long string of untested or off-label treatments for autism, from chelation therapy to hyperbaric oxygen chambers to gluten-free diets, that desperate parents have been spending money on for decades.

None of these treatments has proven beneficial in clinical trials, and some have actually caused harm. FDA officials worry that even if a treatment is relatively safe, it could still divert precious resources away from proven treatments, such as behavioral interventions and certain drugs.

Companies promoting untested approaches face "possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism," the FDA wrote in a consumer bulletin in 2014. "Some of these so-called therapies carry significant health risks."

It's easy to understand the enthusiasm for a treatment like TMS, which is non-invasive, non-pharmacological, and already has FDA clearance for one condition —severe depression that doesn't respond to other treatments. It has few known side effects, though it has been shown, in very rare cases, to cause seizures.

The treatment involves placing a relatively small and very powerful electromagnet on the scalp, and sending pulses of magnetic waves directly into the brain to activate or de-activate particular neurons. It has been used experimentally in autism, mostly in hopes of developing a better diagnostic tool. But as news percolates of this research application, more and more people want to try it for themselves or their children.

But for autism, the science of TMS treatment is, according to researcher Lindsay Oberman, "still in its infancy."

"I know it's easy to get overly optimistic given the media coverage and web posts about the remarkable responses some people with autism have reported after participating in a TMS study," Oberman, a research psychologist at Brown University and Bradley Hospital in Rhode Island, wrote last March in a blog post for the advocacy group Autism Speaks.

But those studies have been very few — just 13 in the medical literature to date — and they tend to focus on only a select group of subjects: adults, generally male, who are high-functioning and do not have epilepsy. It's risky, then, to generalize to how TMS would affect women or children with autism, or people with more severe symptoms.

Poling Case Coda

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Matt Carey writes at LBRB:

One of the most common arguments in the “vaccines-cause-autism” discussion involves the case of Hannah Poling. Miss Poling is autistic and was compensated by the government through the vaccine-court system. Online discussions usually end up going around in circles with people explaining why the concession doesn’t mean the government has stated that vaccines cause autism, and the other side saying “but it does”.
Well, the Court has clarified the situation. Here is a footnote from the decision in Brian Hooker’s case.

I am well aware, of course, that during the years since the “test cases” were decided, in two cases involving vaccinees suffering from ASDs, Vaccine Act compensation was granted.

But in neither of those cases did the Respondent concede, nor did a special master find, that there was any “causation-in-fact” connection between a vaccination and the vaccinee’s ASD. Instead, in both cases it was conceded or found that the vaccinee displayed the symptoms of a Table Injury within the Table time frame after vaccination. (See Section I above).

In Poling v. HHS, the presiding special master clarified that the family was compensated because the Respondent conceded that the Poling child had suffered a Table Injury–not because the Respondent or the special master had concluded that any vaccination had contributed to causing or aggravating the child’s ASD. See Poling v. HHS, No. 02-1466V, 2011 WL 678559, at *1 (Fed. Cir Spec. Mstr. Jan. 28, 2011) (a fees decision, but noting specifically that the case was compensated as a Table Injury).

Autism, Measles, and Arizona

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Astrid Galvan reports at AP:

Health officials in Arizona say the largest current measles outbreak in the United States is in part because some workers at a federal immigration detention center refuse to get vaccinated.

Authorities have confirmed 22 measles cases in Arizona since late May. They all stem from the Eloy Detention Center, an Immigration and Customs Enforcement facility managed by the private Corrections Corporation of America.

Pinal County health director Thomas Schryer said the outbreak likely began with a migrant but that detainees have since been vaccinated. Convincing employees to get vaccinated or show proof of immunity has proven much tougher, he said.

"And so they're actually the ones that are passing along the measles among each other and then going out into the community," Schryer said.

...
Measles is highly contagious and preventable through vaccines. It was eradicated in the US in 2000. But the past couple of years have seen new cases in large part because of unfounded fears that the vaccination causes autism in children, Schryer said. The symptoms are usually mild but can be deadly in babies, who cannot be immunized until they're a year old.

Last month, Caitlin McGlade reported at The Arizona Republic:

About three in every 10 kindergartners who enrolled during the most recent school year without measles vaccines were missing the required exemption forms, according to Arizona Department of Health Services data analyzed by azcentral.com.

...

Nationwide skepticism over vaccines has swelled over the past decade, gaining traction as celebrities such as Jenny McCarthy promoted a largely debunked link between immunizations and autism.

ABA and Autism: Experience Counts

In The Politics of Autism, I write:

Paul M. Shattuck and Anne M. Roux note that large businesses mine “Big Data” to measure performance and improve quality. “We need a corresponding measurement revolution for ASD services, including employment supports. An abundance of opportunities exist for collaborating with community agencies to create practice-based evidence. Scientists with advanced training in measurement and analysis methods are uniquely positioned to be useful in this endeavor.”

A release from Chapman University:

Leading autism treatment provider, Center for Autism and Related Disorders (CARD), announced today a joint study with Chapman University about the effects of variables in treating autism spectrum disorder (ASD). The evaluation provides the most up-to-date, scientifically sound evidence to CARD and other autism therapy specialists in order to provide the best treatment to those with ASD.

CARD and Chapman University analyzed a pool of more than 800 children from ages 18 months to 12 years. Results revealed important determinations in regards to supervision. For example, being a Board Certified Behavioral Analyst (BCBA) and the years of experience an analyst has have a significant direct impact on the autistic individual’s treatment success rate, while increased hours of supervision above the standard ratio and caseload of the BCBA do not. These findings will help guide those who treat individuals with autism better plan, allocate time and direct resources accurately toward treatment plans.

“We are consistently finding that the single most important factor in a child’s treatment outcome is the number of hours of therapy that they have received,” said Dr. Dennis Dixon, CARD’s Director of Research and Development. “What this new study adds is a better understanding of what matters in regards to supervision of treatment. We are now able to improve treatment efficiency while also improving outcomes for every child.”

The study is a collaboration led by CARD’s founder Dr. Doreen Granpeesheh and Dr. Dennis Dixon and Dr. Erik Linstead, Assistant Professor of Chapman University’s Schmid College of Science and Technology. The combined team of CARD and Chapman University proved to be successful in learning more about the best course of action for treating those with ASD.

“It is tremendously exciting to see such impactful work coming from this collaboration between CARD and Dr. Linstead’s team here at Chapman,” said Dr. Andrew Lyon, Dean of the Schmid College of Science and Technology. “The ability to use advanced analytics tools to make better decisions about clinical standards of care is likely to completely transform how we approach healthcare for future generations. With this research collaboration, we see a promising example of this shift in the context of ASD.”
The paper appears in the journal Behavior Analysis in Practice. A link to the full article can be found here: http://link.springer.com/article/10.1007/s40617-016-0132-1
About Center for Autism and Related Disorders (CARD)

CARD treats individuals of all ages who are diagnosed with autism spectrum disorder (ASD) at treatment centers around the globe. CARD was founded in 1990 by leading autism expert and clinical psychologist Doreen Granpeesheh, PhD, BCBA-D. CARD treats individuals with ASD using the principles of applied behavior analysis (ABA), which is empirically proven to be the most effective method for treating individuals with ASD and recommended by the American Academy of Pediatrics and the US Surgeon General. CARD employs a dedicated team of nearly 2,000 individuals across the nation and internationally. For more information, visit www.centerforautism.com or call (855) 345-2273.

Tylenol, Autism,and Hype

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

An earlier post described a study fingering the active ingredient in Tylenol.  Samantha Allen reports at The Daily Beast:

For expecting women, a strong link between acetaminophen and autism would be cause for alarm. But despite a recent flurry of alarmist headlines, the evidence for such an association is still lacking.

Pregnant women generally rely on acetaminophen, a painkiller commonly found in Tylenol, rather than potentially-risky ibuprofen to manage fevers and pain. But after aJune study in the International Journal of Epidemiology turned up a link between acetaminophen use during pregnancy and the incidence of autism and ADHD in children, the media was quick to exaggerate the findings.

The biggest offender, of course, was the Daily Mail, which declared in its headline that “women who take paracetamol [acetaminophen] during pregnancy ‘risk having a child with autism or ADHD.’” The words in single-quotes do not appear in the study itself.

As the UK’s National Health Service (NHS) was quick to point out in response, the study “provides no evidence of a direct link to either condition.”

"Autistic Child Area" Signs

The Politics of Autism discusses the problems of wandering and day-to-day safety.

In Queens, NY, Charlie Perry reports at QNS:

Assemblyman Phil Goldfeder announced Tuesday his plans to urge the Department of Transportation (DOT) to install signs in key areas around Howard Beach to ensure the safety of children with autism.
...
“Autistic Child Area” signs aim to alert drivers and ensure they take additional precautions in areas around Howard Beach that feature facilities catering to people with autism, special needs schools and parks utilized by autistic children.
...
“Kids with autism are unpredictable; they can jet out into the street at any given time,” President and CEO of New York Families for Autistic Children Andrew Baumann said in a press release issued Tuesday. “If people knew that an area had autistic kids, they could be more aware. They could look towards the sidewalks, and knowing that just because a kid is walking down the sidewalk doesn’t mean they’re not going to jet out.”

Trump, Vaccines, and Public Opinion

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.   In September, I wrote at The Hill:

Trump is hardly the first politician to spout misinformation – but in this case, it is downright dangerous. If parents take him seriously and delay vaccinations, their children could catch the diseases that the vaccines prevent. And some of these diseases can be deadly.

Betsy Woodruff reports at The Daily Beast:

Republicans are more skeptical of vaccine science than we may have previously realized—and Donald Trump may bear some of the blame.

A new study, conducted for The Daily Beast by a researcher at Washington State University, found a relationship between Republican party affiliation and anti-vaccine sentiment. Survey participants who didn’t plan to vaccinate themselves or their families most often named Donald Trump as a public figure they thought shared their views.

...

Researchers ran an internet survey of 400 people in the United States on June 29 using Amazon’s Mechanical Turk. It’s a tool academics commonly use to survey large numbers of people, including those researching political psychology, consumer behavior, and social psychology. Participants answered one series of questions on their intentions to vaccinate themselves and their families, and another on their political views. Half the participants got the vaccine questions first, and the other half got the political questions first. After answering those questions, participants were asked to name public figures who they thought shared their views on vaccines.

SUNY-Albany marketing professor Ioannis Kareklas and Washington State University Ph.D. candidate T.J. Weber analyzed the data. They found that 25 percent of respondents affiliated with the Republican Party said it was more likely they would not vaccinate themselves and their families than that they would. Meanwhile, 15 percent of respondents who identified with the Democratic Party gave the same answer.

And Trump’s supporters were substantially more likely to have a negative view of vaccines than Hillary Clinton’s. Of the respondents who said they would vote Trump, 23 percent said they were unlikely to get vaccinated. Of the pro-Clinton respondents, 13.5 percent felt the same way.

Autism, Politics, and Culture

In The Politics of Autism, I discuss the neurodiversity movement. 

Robert Chapman writes at The Establishment:

Consider here how politics, just as much as scientific advancement, has affected our understanding of what it means to be autistic. When Dr. Hans Asperger first used the term “autism” to categorize a distinct group of patients in Vienna during the 1930s, for example, his key aim was not merely to locate some underlying physical disease. Rather, it was to save those with this idiosyncratic way of being, which he argued was valuable due to autistic creativity, from extermination by the eugenicist Nazi occupiers. The baptism of the syndrome was thus itself a deeply political act—a humanitarian response to fascism—rather than a medical one, despite being framed in a medical vocabulary.

Today, largely due to the internet, autistic people have been able to meet and communicate with each other. In this context, the political weight of our diagnosis has broadened: It protects us not only from eugenic extremists, but from a normative society that is liable to misunderstand and judge us. We are no longer isolated eccentrics surrounded by “normal” communities; we have our own communities, norms, and practices, in which things like collecting fruit stickers make perfect sense. Autism, in other words, has begun to develop into a culture, and this culture opens up the space for autistic behaviors to begin to manifest as meaningful.

Tylenol and Autism?

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy. 

A release at Medical Express describes a study fingering the active ingredient in Tylenol:

A new study has found that paracetamol (acetaminophen), which is used extensively during pregnancy, has a strong association with autism spectrum symptoms in boys and for both genders in relation to attention-related and hyperactivity symptoms.

The findings were published this week in the International Journal of Epidemiology. This is the first study of its kind to report an independent association between the use of this drug in pregnancy and autism spectrum symptoms in children. It is also the first study to report different effects on boys and girls. Comparing persistently to nonexposed children, the study has found an increase of 30 per cent in the risk of detriment to some attention functions, and an increase of two clinical symptoms of autism spectrum symptoms in boys.

Speculation about a Tylenol-autism link has been around for years.  At The Independent, however, May Bulman reports that skepticism is in order:

[The] director of science at autism charity Autistica, Dr James Cusack, insisted there was “not sufficient evidence” to back the suggestion.

He said: “This paper does not provide sufficient evidence to support the claim that there is a strong association between paracetamol use and the presentation of symptoms of autism. The results presented are preliminary in their nature, and so should not concern families or pregnant women." 

... He added that there had been "an array of environmental factors which have been associated with autism, only to be rejected later", emphasising the importance of collecting sufficient evidence before making such claims.

Quality of Life

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

At Autism Speaks, Amal El-Nageh describes an effort to assess the quality of life of autistic adults.

JFCS of Greater Philadelphia is excited to share the results of our recent project, the development ofa quality of life assessment for adults with autism spectrum disorder (QLAA). This initiative was made possible through the generous funding provided by Autism Speaks’ Family Services Community Grant.

As many of us know, needed services and supports for adults with autism spectrum disorder (ASD) are lacking, and funding to develop these programs is limited. However, most service providers express a commitment to enriching the quality of life of those they serve. How do we decide where to invest limited funding? As service providers, how can we determine if our interventions are making an impact on individuals’ quality of life? 

This project began when a professional team that works with people living with disabilities at JFCS sought an instrument to measure quality of life of adults diagnosed with ASD. After completing a thorough literature review, we were unable to locate an appropriate tool. Recognizing the need for this, we decided to take the initiative to develop the QLAA: Quality of Life Assessment for Adults diagnosed with ASD.

... 

Implementation of a QoL instrument allows care managers and care coordinators to capture a holistic overview that includes the client’s perspective on his/her quality of life, resulting in comprehensive service to the clients that comprises the most appropriate combination of services and resources available.

21st Century Cures Act

In The Politics of Autism, I write about medical and scientific research.

An email from Autism Speaks:

Thank you for making your voice heard in recent weeks on legislation that would accelerate medical innovations for the autism community.

Last year, HR 6, the 21st Century Cures Act, passed with bipartisan support and now we need your help to pass companion legislation in the U.S. Senate.

The legislation has already cleared a key committee hurdle and we need our community to ask the Senate to bring the legislation for a floor vote as soon as possible.
Ask your U.S. Senators to support the Senate HELP Committee's medical innovations package.

Thanks for all your hard work!
Thanks,
Stuart
Stuart Spielman
Senior Policy Adviser and Counsel
Autism Speaks

From Govtrack:

The 21st Century Cures Act is a bipartisan bill that would reform the current standards and appropriations for biomedical research, provide $1.75 billion annually for the National Institutes of Health (NIH) and $110 million for the Food and Drug Administration (FDA). This funding would end after five years. Support for this funding would come from budget offsets. Along with an increase in NIH and FDA funding, the bill would reduce regulations on access to medical research and expedite the testing processes of new drugs. The bill was referred to the House Committee on Energy and Commerce, which released a section-by-section summary and a discussion document. The committee chairman, Rep. Fred Upton (R-MI6), sponsored the bill. It passed by a vote of 344-77 [on July 10, 2015] It received bipartisan support, with 170 Republicans and 174 Democrats voting in favor of the bill. It has moved on to the Senate.

Judge Blocks Indiana Abortion Law

In The Politics of Autism, I explain:

When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.

At The Huffington Post, Kim Bellware reports on a ruling concerning an Indiana law that would have prevented such abortions.

U.S. District Judge Tanya Walton Pratt on Thursday granted a preliminary injunction sought by Planned Parenthood of Indiana and Kentucky [PPINK] to prevent the regulation from taking effect Friday on the grounds the law was unconstitutional and invaded women’s privacy.

Pratt’s order cited Monday’s major U.S. Supreme Court ruling that struck down restrictions in a Texas abortion law. 

Indiana Gov. Mike Pence (R) in March signed a controversial law that imposed new regulations and restrictions on abortion, including a so-called anti-discrimination clause. Indiana and North Dakota are the only states that have laws banning abortion for issues like genetic abnormality.

...
 Indiana University joined the PPINK lawsuit over a provision of the law that sought to control how fetal tissue was transferred and disposed of. 

The university, which conducts research on conditions like autism and Alzheimer’s using fetal tissue, argued that a professor transferring out of state with their research would be unable to do so without committing a felony under the law.