Questions about a Study

An earlier post discussed allegations that CDC had covered up evidence linking vaccines and autism among African Americans. CNN reports:

A study published earlier this month concluded African-American boys are more at risk for autism if they're given the measles, mumps and rubella vaccine before the age of 2. The study author says researchers at the Centers for Disease Control and Prevention knew about the link in 2004 -- and covered it up. 

CDC researchers are standing by their original findings: that there is no link between autism and vaccination schedules. 

The new study was funded by the Focus Autism Foundation, which says it is dedicated to exposing the causes of autism, "focusing on the role of vaccinations." 

The study has since been removed from the public domain pending further investigation, according to Translational Neurodegeneration. 

In an online statement, the scientific journal said the paper had been removed "because of serious concerns about the validity of its conclusions." 

CNN first became aware of the study when an iReport was posted about its publication and the controversy surrounding it. iReport is CNN's user-generated news community.

Science and Alternative Medicine

A number of posts have dealt with complementary and alternative medical treatments for autism. Scott Pomeroy writes at RealClearScience:

Why waste time and money testing medical treatments that defy the laws of physics and chemistry?

That's the pointed question posed by Drs. David Gorski and Steven Novella in a new op-ed published in the journal Trends in Molecular Medicine. To most, the answer is obvious: we shouldn't. But in the past decade, alternative medicines without any basis in science, like acupuncture, homeopathy, and chiropractic, have received hundreds of millions of dollars from the U.S. government, which, in turn, has been used to fund hundreds of randomized clinical trials.

Alternative medicine supporters insist that these trials are necessary to find out what does and does not work. That seems reasonable. But unlike proper scientists, they don't cast off that which evidence shows to be worthless. When a study's result is negative -- and almost all of them are -- they ignore it. And on the rare occasion when a study's result is positive -- however miniscule the effect may be -- they cling to it like there's no tomorrow. In the eyes of the alternative medicine proponent, more research will always be needed.

Sexual Victimization

Disability Scoop reports:

Adults with autism face a greater risk of sexual victimization than their typically-developing peers, researchers say, and a lack of education could be part of the reason why.

In a survey of adults with and without autism, 78 percent of those on the spectrum reported at least one instance of sexual victimization compared to less than half of their typically-developing peers.

People with autism were more than twice as likely to say that had been raped and over three times as likely to report unwanted sexual contact, according to findings published in the September issue of the Journal of Autism and Developmental Disorders.

For the study, researchers surveyed 95 adults with autism and 117 without, ages 19 to 43. Individuals were asked about unwanted sexual contact and their knowledge of contraception, reproductive health and other issues surrounding sexuality.

The Pennsylvania Cliff

Jeff Hawkes writes at Lancaster Online:

"We always say at the age of 21 the (school) bus stops coming," said Nina Wall, who oversees the limited services for adults with autism in Pennsylvania.

Pennsylvania has more than 8,400 adults with autism, Wall said. Funding's available for 518.
[Travis] Rohrer waits on a slow-moving list while his parents fret.

Marie Mambuca with Pittsburgh-based ABOARD, an autism network sponsoring more than 60 support groups across the state, said she's inundated by calls from parents of adults and adults themselves wanting help.

"Moms and dads are saying, 'We're tired,' " said Mambuca, adding, "It's hard to raise a child with autism for 20-some years, and there's not a whole lot of options when they become adults."

...

In response to a reporter's inquiry, Lawrence George, director of the $26.5-million agency, said he could not speak about a specific client, but explained that state regulations limit BHDS's mental health services to those adults with specific severe illnesses, and autism is not included.

On Aug. 1, Philhaven discharged Rohrer from the day hospital, adding to his parents' worries that without ongoing help their son's compulsive and impulsive behaviors could lead to new trouble.

George at BHDS sympathizes. "There remains a significant funding gap (for adults with autism), and there are individuals who obviously need more than they're getting," he said.

Rohrer's story is not unique. The more than 8,400 adults with autism in Pennsylvania are the vanguard of the thousands of children in the pipeline who will need services after they finish school.

By 2020, the state projects, adults with autism will exceed 31,000.

Pennsylvania in 2008 began funding autism services for adults under a Medicaid waiver. The new state budget added funding in 2015 for 100 more adults, bringing the total to 518, or only 6 percent of the current estimate. The state projects spending $20.4 million in 2014-15. The average monthly cost per client last year was $3,878.

Conspiracy Theory

Phil Plait writes at Slate:

There's a conspiracy theory going around that the CDC covered up a link between autism and vaccines. From what I can tell, this conspiracy theory is on the same level as the one that NASA faked the Moon landings. And you know how I feel about that.

Perhaps you’ve heard about this CDC theory; it’s burning up on Facebook, Twitter, and other social media. The gist of it is that a “whistleblower” at the Centers for Disease Control and Prevention has revealed some hanky-panky done by researchers there to cover up a link between vaccines and autism found in a certain group of babies, and a new analysis supposedly shows this connection.

It’d be a compelling story, if it were true. However, it appears very strongly to be false. Since I am not an expert in the specifics, I direct you to two posts: "Did a high ranking whistleblower really reveal that the CDC covered up proof that vaccines cause autism in African-American boys?" by Dr. David Gorski at Science Based Medicine, and “Andrew Wakefield Tortures History” at Harpocrates Speaks. These, together with links therein, show to my satisfaction why this conspiracy claim is more heat than light. As the first post by Gorski shows, the "new analysis" fails for multiple reasons, including using small numbers for statistics (a big no-no), applying statistics incorrectly, and not even employing an actual statistician for the analysis. There are other very serious problems as well, all of which are laid bare in those posts.

Arturo Garcia writes at Raw Story:

Actor and anti-vaccine advocate Rob Schneider contacted California Gov. Jerry Brown’s office (D) claiming to possess documents showing that the Centers for Disease Control has hidden data showing Black children are at a particularly high risk of developing autism from vaccines.

According to the anti-vaccine site The Canary Party, Schneider stated in his letter to deputy legislative secretary Lark Park that he was “compelled” to share his proof of a CDC report the agency suppressed and “fraudulently changed.”

“One disturbing disclosure, AFRICAN AMERICAN CHILDREN were and still are THREE HUNDRED AND FIFTY PERCENT more likely to develop Autism under the current Vaccine MMR schedule,” Schneider wrote. “This according to the original CDC study in 2001.”

Schneider may have been referring to a 2004 letter to the CDC regarding a study of African-American children which was recently unearthed. Anti-vaccination activists say the letter proves that evidence of a link between the MMR (Measles-Mumps-Rubella) vaccine and autism was suppressed by the CDC. The agencysaid in a statement that the study’s results were due to issues with the sample and not a vaccine-autism link.

Medicaid and Comprehensive Services

Michelle Andrews reports at Kaiser Health News:

In July, the Centers for Medicare & Medicaid Services announced that comprehensive autism services must be covered for children under all state Medicaid and Children’s Health Insurance Program plans, another federal-state program that provide health coverage to lower-income children.

Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn't explicitly required, advocates expect it will be covered.

"Since ABA is the most accepted, effective treatment that isn't experimental and investigational, you can't just exclude it entirely," says Daniel Unumb, executive director of Autism Speaks' legal resource center.
...
Like California, some states provided limited coverage before to certain age groups, for example, or up to a specified dollar amount. But the new policy is important because it requires mandatory coverage for everybody under 21, says Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, a Burlingame, Calif.-based advocacy group.

In a coverage bulletin last month, CMS said that state Medicaid programs must cover a full range of autism services under the "early and periodic screening, diagnostic and treatment services" provision of the law. The EPSDT benefit, as it’s called, covers any services that are medically necessary to correct or ameliorate physical or behavioral conditions in children up to age 21.

Some states are concerned about the new requirement, says Matt Salo, executive director of the National Association Of Medicaid Directors.

"The nexus of covering a lot of kids and a fairly unknown condition and treatment for that condition, combined with EPSDT, anytime you get that you get states a bit concerned because there's very little way to control costs in that arena," says Salo.

The new coverage guidelines apply to children with autism spectrum disorder, a group of developmental conditions including autistic disorder and Asperger syndrome. Roughly 1 in 68 children have the disorder, according to the Centers for Disease Control and Prevention. The Association Of Maternal Child Health Programs estimates that just over a third of them get coverage through Medicaid or CHIP.

After Sheltered Workshops?

 AP reports:

A recent federal ruling aims to help find jobs for people with developmental disabilities, but some Wisconsin families are worried about how it will be implemented.

The decision involves working conditions for people who have cognitive disabilities such as autism and Down syndrome. Some may have trouble reading, counting money or being in large groups, which leaves them with limited options.

Often they end up employed at so-called "sheltered workshops," where they perform basic tasks but are separated from nondisabled workers — in part so they can get needed services or be in stress-free surroundings.

The landscape shifted in 1999, when the U.S. Supreme Court said people with disabilities should be given every chance to work and live in integrated settings, where they're surrounded by non-disabled people as much as possible.

The ruling drew renewed attention in January when the federal Centers for Medicare and Medicaid Services, or CMS, finalized instructions on how to comply with the decision. The agency also gave states five years to develop transition plans for compliance.

The Wisconsin Department of Health Services is inviting public comment through Sept. 2, before it submits its transition plan to CMS on Oct. 2.

Some parents and guardians of those with disabilities worry about what will happen if sheltered workshops are disallowed. They acknowledge the federal decision is well-intentioned but worry that lower-functioning individuals who lose that option could be left with no alternatives at all.

Seven Times?

Rebecca Hersher reports at NPR:

According to the advocacy group Autism Unites, people with autism spectrum disorders are seven times more likely to interact with police over their lifetimes, compared with people without a cognitive disorder.

The "seven times" figure appears to come from Dennis Debbaudt, who consults on intereactions between police and people on the spectrum.  In 2001, he wrote with Darla Rothman:

Recent research concluded that the developmentally disabled are approximately seven times more likely to come in contact with law enforcement than others.1

The "recent research" cited in the footnote was a 1993 article:

1.  K. Curry, M. Posluszny, and S. Kraska, "Training Criminal Justice personnel to Recognize Offenders with Disabilities," Office of Special Education and Rehabilitative Services News in Print, (Winter 1993).

This article, in turn, is available here.  It does provide some data on the incarceration of people with intellectual and learning disabilities, but does not have any data on broader contacts with police.  Most important, it does even not mention the word autism.  Even if it had, the data would not have been useful, since the criteria for identifying autism have shifted considerably since the publication of DSM-IV in 1994.

What do we actually know about the subject?  A systematic review of the literature has found:

It was found that whilst there is an emerging literature base on this topic, there are a wide variety of methodologies used, making direct comparison difficult. Nevertheless it can be concluded so far that people with ASD do not seem to be disproportionately over-represented in the CJS [criminal justice system], though they commit a range of crimes and seem to have a number of predisposing features. There is poor evidence of the presence of comorbid psychiatric diagnoses (except in mental health settings) amongst offenders with ASD, and little evidence of the oft-asserted over-representation of certain kinds of crimes. 

The Bureau of Justice statistics does not separately measure crime against ASD people, but it has found that victimization of people with cognitive disabilities is twice as common as crime against non-disabled people.

Breaking Good

The Orlando Sentinel reports:

"Breaking Bad" actor Aaron Paul reached out with compassion and words of encouragement to an Okeechobee teen with Autism who was violently attacked at a house party, WPBF.com reports.

Paul shares a first name with the victim, 16-year-old Aaron Hill.

,,,
The incident was recorded on a cell phone and the video quickly went viral, sparking a social media movement using the hashtag #JusticeforAaron.

After seeing the video, Paul reached out to Hill on Twitter, writing "I am so sorry that this terrible tragedy has happened to you."

He also offered Hill encouragement and a trip to Disneyland. "Our treat," he wrote.

Paul is known for his role as Jesse Pinkman on the hit AMC series "Breaking Bad."

 

A Forum in South Dakota

In Sioux Falls, SD, the Argus Leader reports on a public forum about insurance coverage.

Some spoke of their surprise to learn that Wellmark, the state’s biggest insurer, would be dropping its coverage of the ABA therapy. The therapy costs more than $100,000 a year.

“We’re a middle-class family. If you’re an autism family, you’re going broke fast,” said Richard Zeck, a Brookings resident whose 12-year-old son lives with the disorder.

Zeck said his family lived 11 years in North Dakota, where state policy mandated generous coverage of applied behavioral analysis, then moved to South Dakota, where there was no help.

“The difference is appalling,” he said of the two Dakotas.
...
Dr. Tim Gutschall, chief medical officer for Wellmark in Des Moines, then addressed the group. He listed several forms of less intense autism therapy that Wellmark covers, then told why Wellmark does not cover the ABA therapy.

Autism is not entirely a medical issue, but also an educational issue, and the ABA therapy has had inconsistent results, he said. He asked why coverage should be mandated when the science is changing so fast.

With that comment, Ron Larson, hurried back to the microphone to scold Gutschall.

“We’re not here to be lectured,” Larson said. When insurers such as Wellmark take a position on legislation, “they’re going to make money off it,” he added.

Down Syndrome and Abortion

There is currently no prenatal test for autism.  If there were, as in the case of Down Syndrome, the issue of abortion would come up.  The Guardian reports:

The scientist Richard Dawkins has become embroiled in another Twitter row, claiming it would be “immoral” to carry on with a pregnancy if the mother knew the foetus had Down’s syndrome.

The British author made the comment in response to another user who said she would be faced with “a real ethical dilemma” if she became pregnant and learned that the baby would be born with the disorder.

Dawkins tweeted: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

He faced a backlash for his comment, with one mother, who has a child with the genetic condition, saying: “I would fight till my last breath for the life of my son. No dilemma.”

Dawkins later defended his view, saying he would not apologise “for approaching moral philosophic questions in a logical way”. He went on to point out that Down’s syndrome foetuses are aborted in many cases, and that abortion was a woman’s choice.

Important New Review of Behavioral Therapies

The Agency for Healthcare Research and Quality has a new report, Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update.  An excerpt:

Since our previous review in 2011, there has been a significant increase in the quantity and quality of studies investigating behavioral interventions. These new studies add to the prior report and strengthen our ability to make conclusions about the effectiveness of behavioral interventions. Of the 45 comparative studies of behavioral interventions (29 RCTs [randomized controlled trials]) in the 2011 review, we considered only 2 as good quality. Among the new studies described in this current review, 19 studies are good quality, and 48 of the 65 included studies are RCTs.

Evidence from the original report and this update suggests that early behavioral and developmental intervention based on the principles of ABA delivered in an intensive (>15 hours per week) and comprehensive (i.e., addressing numerous areas of functioning) approach can positively affect a subset of children with ASD (Table B). Across approaches, children receiving early intensive behavioral and developmental interventions demonstrate improvements in cognitive, language, adaptive, and ASD impairments compared with children receiving low-intensity interventions and eclectic non–ABA-based intervention approaches.

Since our previous review, there have also been substantially more studies of well-controlled low-intensity interventions aimed at parent training for comprehensive impact on social communication skills. Although parent training programs modified parenting behaviors during interactions, data are more limited about their ability to improve broad developmental skills (such as cognition, adaptive behavior, and ASD symptom severity) beyond short-term language gains for some children.

A growing number of studies of improved quality demonstrated positive effects of social skills interventions on at least one outcome measure, but a lack of consistency in the interventions studied and outcome measures used makes it difficult to understand specific effects of different intervention modalities.

A growing evidence base also suggests that children receiving targeted play-based interventions (e.g., joint attention, imitation, play-based interventions) demonstrate improvements in early social communication skills. Children receiving targeted joint attention packages in combination with other interventions show substantial improvements in joint attention and language skills over time. There is also evidence across a variety of play-based interventions that young children may display short-term improvements in early play, imitation, joint attention, and interaction skills. However, evidence that these short-term improvements are linked to broader indexes of change over time is not substantial.

CBT [cognitive behavioral therapy] for associated conditions such as anxiety had the largest number of high-quality studies in the current review. A strong evidence base now suggests that school-aged children with average to above average intelligence and comorbid anxiety symptoms receiving manualized CBT therapy show substantial improvements in anxiety compared with wait-list controls. Table B summarizes the strength of the evidence for each category of intervention.

A Center for ASD Adults

In Seattle, KING-TV reports on a program for adults with autism:



The report discusses the need for community centers for ASD adults:

Now that place exists: The Alyssa Burnett Adult Life Center in Bothell.

Program manager Tammy Mitchel said the approach is loosely based on the parks and recreation model. Goals are modest but also monumental.

The focus is on learning but also on fun.

Dr. Gary Stobee said the need for social connections increased in the 20s.

"They're still not that good at it and they need places to practice. And what better place than this safe environment to potentionally meet others that have similar interests, and to continue to grow socially," Stobee said.

Word has gotten out about the community center. Seattle Children's has received calls from Alaska, Colorado, California, Idaho and Montana asking about these services. That's how great the need is.

More information on the Alyssa Burnett Adult Life Center.

Trends in Childhood Disability

A release from the University of Pittsburgh Medical Center:

The percentage of children with disabilities due to neurodevelopmental or mental health conditions continues to rise, particularly among children in more socially advantaged households, according to a Children’s Hospital of Pittsburgh of UPMC analysis that appears in the September issue of Pediatrics.

Results of the study, led by Amy Houtrow, M.D., Ph.D., M.P.H., chief, Division of Pediatric Rehabilitation Medicine at Children’s Hospital, found that while there has been a decline in physical health-related disabilities by approximately 12 percent, there was a large, nearly 21 percent rise in disabilities classified as neurodevelopmental or mental health in nature.

The researchers studied data from the National Health Interview Survey conducted by the U.S. Centers for Disease Control and Prevention between 2001 and 2011, evaluating each child’s ability to perform activities at home and school.

Although children living in poverty have the highest rates of disability, children living in families at or above 400 percent of the federal poverty level reported a 28.4 percent increase in disabilities over the past 10-year period.

Dr. Houtrow and the researchers offered four reasons that may explain the increased rates of disability related to neurodevelopmental or mental health conditions:

• shifts in diagnostic criteria
• overall increases in rates of certain problems including autism
• increased awareness of these conditions
• the need for a specific diagnosis to receive services such as early intervention 

“This study demonstrates what a lot of pediatricians have been noticing for several years – that they are seeing more neurodevelopmental and mental health problems in their clinical practices,” said Dr. Houtrow, who also is an associate professor of Physical Medicine & Rehabilitation and Pediatrics and vice chair in the University of Pittsburgh School of Medicine’s Department of Physical Medicine and Rehabilitation. “As we look toward the future, the pediatric health care workforce and system needs to adapt to assure the best possible health and functional outcomes for children with disabilities related to neurodevelopmental and mental health conditions.”

Study Finds No Increase in Prevalence

A release from the University of Queensland:

A University of Queensland study has found no evidence of an increase in autism in the past 20 years, countering reports that the rates of autism spectrum disorders (ASDs) are on the rise.

The study, led by Dr Amanda Baxter from UQ’s Queensland Centre for Mental Health Research at the School of Population Health, was a first-of-its-kind analysis of research data from 1990 to 2010.

Dr Baxter said she and her colleagues found that rates had remained steady, despite reports that the prevalence of ASDs was increasing.

“We found that the prevalence of ASDs in 2010 was one in 132 people, which represents no change from 1990,” Dr Baxter said.

“We found that better recognition of the disorders and improved diagnostic criteria explain much of the difference in study findings over time.”

Part of the Global Burden of Disease project, this is the largest study to systematically assess rates and disability caused by ASDs in the community, using data collected from global research findings in the past 20 years.

ASDs are chronic, disabling disorders that stem from problems with brain development.

They affect people from a young age and are among the world’s 20 most disabling childhood conditions.

The study shows that about 52 million children and adults around the globe meet diagnostic criteria for an ASD.

Dr Baxter said researchers hoped the study would help guide health policy and improve support for those with ASD and their families.

“As ASDs cause substantial lifelong health issues, an accurate understanding of the burden of these disorders can inform public health policy as well as help allocate necessary resources for education, housing and employment,” she said.

The study, a collaboration with the University of Leicester and the University of Washington’s Institute for Health Metrics and Evaluation, is published in Psychological Medicine journal.

The Aaron Hill Beating

Too many posts have had to mention violence, bullying, and abuse of people with autism and other disabilities.

The Huffington Post reports:

Two people have been arrested after a vicious beating of a child with autism went viral.

Andrew Wheeler, 18, was arrested last week for allegedly beating 16-year-old Aaron Hill at a party in Okeechobee, Florida last Friday, according to WPTV.

...
Evadean Lydecker Dailey was also arrested in connection with the party. She is accused of giving the teens at the party alcohol, according to WPBF.

Outrage over the video spread quickly and sprouted the Facebook group and hashtag #JusticeForAaron.

The campaign has attracted the attention of tens of thousands, including celebrities like Breaking Bad's Aaron Paul.

In a follow up report, WPTV says Wheeler's family now fears for their lives.

Science and Community Engagement

At Autism, Mayada Elsabbagh and colleagues have an article titled "Community Engagement and Knowledge Translation: Progress and Challenge in Autism Research."   The authors note that clinical practice and public beliefs do not always reflect good evidence, and they cite the vaccine controversy as one example.

In addition to these prominent examples of absent or flawed use of evidence, public engagement, which is viewed as a key facilitator in translation, has been inconsistent in the field of autism. On the one hand, families themselves instigated and drove advances in research through active support and fundraising. Parents have also historically contributed to expert understanding of autism and directed avenues of research through advocacy and fundraising for autism research (Silverman and Brosco, 2007). On the other hand, scientific research is often viewed as disconnected from the divergent ways of thinking about and responding to autism in society, the variable immediate needs and priorities across different communities, and the policy choices made by governments (Elsabbagh, 2012; Khan et al., 2012; Pellicano and Stears, 2011; Young et al., 2002).

Numerous cases of this disconnect have been previously described in the field of autism. First, it has been suggested that media hyping of biomedical studies and premature claims of clinical utility of new findings can, in the long run, undermine the true value of scientific discovery and reduce public trust in research (Walsh et al., 2011). Second, framing of long-term goals of autism research by some charity funders as a search for a “cure” has led to antagonism from neurodiversity advocates who reject the view that autism is a disease needing a cure (Jaarsma and Welin, 2012; Molloy and Vasil, 2002; Singer, 1999; Walsh et al., 2011). Third, when considered from the perspective of diverse cultural and socio-economic contexts, certain practice guidelines for the identification and management of autism have limited utility especially in low- and middle-income countries (Khan et al., 2012). Therefore, a real or an apparent disconnect between the mainstream research agenda and the values, needs, or priorities of any stakeholder group poses a challenge for knowledge translation.

• Elsabbagh M (2012) Perspectives from the common ground.Autism Research 5: 153–155.
• Jaarsma P and Welin S (2012) Autism as a natural human variation:reflections on the claims of the neurodiversity movement.Health Care Analysis 20: 20–30.
• Khan NZ, Gallo LA, Arghir A, et al. (2012) Autism and the grand challenges in global mental health. Autism Research 5: 156–159.
• Molloy H and Vasil L (2002) The social construction of Aspergersyndrome: the pathologising of difference? Disability &Society 17: 659–669.
• Pellicano E and Stears M (2011) Bridging autism, science andsociety: moving toward an ethically informed approach toautism research. Autism Research 4: 271–282.
•  Silverman C and Brosco JP (2007) Understanding autism: parents and pediatricians in historical perspective. Archives of Pediatrics & Adolescent Medicine 161: 392–398.
• Singer J (1999) Why can’t you be normal for once in your life?From a problem with no name to the emergence of a new category of difference. In: Corker M and French S (eds) Disability Discourse. Buckingham: Open University Press,pp. 59–70
• Walsh P, Elsabbagh M, Bolton P, et al. (2011) In search of biomarkersfor autism: scientific, social and ethical challenges. Nature Reviews Neuroscience 12: 603–612.
• Young K, Ashby D, Boaz A, et al. (2002) Social science and theevidence-based policy movement. Social Policy and Society 1: 215–224.

Another problem is that many academic journal articles are not readily available to the general public.  Unless one has an institutional affiliation, one has to pay a good deal of money for access.  This single article, for instance, costs $30 to purchase.  (One important exception: it is a condition of Autism Speaks funding that all peer-reviewed articles supported in whole or in part by its grants must be made available in the PubMed Central online archive.)

ABA, Insurance, and Oregon

Kate Willson reports at Willamette Week:

Seven years after families began asking the Oregon Insurance Division to intervene on their behalf, the state’s insurance regulator announced today it will issue a formal bulletin, clarifying that insurers cannot refuse to cover a costly therapy for autistic kids called Applied Behavior Analysis.

The decision comes a week after a federal judge ruled that the Providence Health Plan broke federal and state law by denying coverage for the treatment.

Since 2007, families have won more than 20 appeals to Independent Review Organizations after insurers failed to pay for ABA, which for more than a decade has been considered medically necessary, effective and the national standard of care to treat children with autism.
...
In 2013, a senior analyst in the division drafted a policy memo that echoed the argument of insurance companies: covering ABA treatment is not required by law. He then shared that draft with industry executives. That position was later adopted by Gov. John Kitzhaber’s heath care advisor Sean Kolmer, says Paul Terdal, the father of two autistic children. Terdal met repeatedly with Kolmer in his campaign to get the state to force insurers into compliance.

But Terdal says Kolmer did not help. Kolmer declined to be interviewed.

Terdal applauds the insurance division's directive.

“It’s great. I’m really glad [Insurance Commissioner Laura] Cali is moving forward with this. It’s time. Let’s go,” Terdal says. “What’s going to be tricky, she’s now going against the governor’s office. Because the [Public Employees' Benefit Board] is now doing exactly what Providence has been doing. So they are pretty exposed."
...

Gov. John Kitzhaber says he's prepared to adjust the state's health plans to reflect his insurance division policy.

"I support the Oregon Insurance Division providing clarity to families and providers on insurers’ responsibility to cover this treatment for autism," he tells WW through spokeswoman Melissa Navas. "Once the insurance division's work is done, I expect PEBB will review the bulletin and adjust plans to achieve consistency."

TV News Reports on Autism

WPTV in West Palm Beach, Florida, has a series of reports on autism.

Here is one report, on changing attitudes:

ASD People in Business

AP reports on autistic business people:

Although Christopher Tidmarsh graduated from college with a degree in languages, environmental science and chemistry, he was in the same limbo as other autistic people. A post-college internship didn't work out because co-workers didn't make the accommodations he needed, like labeling drawers where he could find supplies, or communicating with him through emails rather than by talking. Job interviews were nearly impossible because he needs time to process the questions and come up with answers.

"People in the traditional work place don't know how to work with people with autism like me," Tidmarsh says.

The solution was starting Green Bridge Growers, a company that grows vegetables in water, a process called aquaponics. Tidmarsh has been building the business in South Bend, Indiana, with his mother, Janice Pilarski, the last two years. They came up with the idea for the business because it would allow him to use the knowledge he developed in college and internships with organic farmers.

While the company is still in its early stages, Tidmarsh is already thinking ahead to expand it beyond its current one greenhouse.

"Having my own business makes me feel as though I've accomplished something," he says.
_____
Online:
www.saarc.org
www.templegrandin.com
www.autismspeaks.org
www.stutteringkingbakery.com
www.poppinjoes.com
www.greenbridgegrowers.com

More on the Oregon Class Action Suit

Previous posts described a class action suit in Oregon. From the law firm of Stoll Berne (including a link to the ruling itself):

On August 8, 2014, U.S. District Court Judge Michael Simon issued a ruling in favor of Stoll Berne's clients, two plaintiffs representing a class of people with autism seeking coverage of ABA Therapy. The Court's ruling found that Providence's practice of denying coverage of ABA Therapy under a "developmental disability exclusion" violates state and federal law.

Keith Dubanevich, Joshua Ross and Nadine Gartner represent plaintiffs and the class in this matter.

At Oregon Public Broadcasting, Kristian Foden-Vencil reports:

Providence is not the only company to fight coverage of ABA therapy.

Paul Terdal has two boys diagnosed with autism. He helped more than a dozen families successfully appeal coverage denials by Kaiser Permanente a few years ago. Kaiser subsequently agreed to cover ABA therapy.

Terdal said that the Providence ruling is “absolutely fantastic. I mean it is, we’ve been making all of these arguments all along for several years and to have it come out in a solid, well done legal opinion by a U.S. District Court Judge that is basically confirming all you’ve been saying is just amazing.”

Earlier this year, a federal judge in Seattle ruled that Regence Blue Shield violated state law by not covering therapies for autistic children older than six.

Obama Signs Autism CARES Act

Michelle Diament reports at Disability Scoop:

With little fanfare, President Barack Obama signed a reauthorization of the nation’s primary autism legislation that includes more than a billion dollars in federal funding for the developmental disorder.

Signed on Friday, the law calls for $260 million annually through 2019 for autism research, prevalence tracking, screening, professional training and other initiatives.

The measure known as the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES, serves as a renewal of what’s previously been called the Combating Autism Act. That law, which was first enacted in 2006, was set to expire September 30.

Mandates in New Jersey and Pennsylvania

At The Philadelphia Inquirer, Rachel Zamzow reports on insurance mandates in New Jersey and Pennsylvania:

Since the law was passed in New Jersey, "we've seen an ebbing, but we still see a lot of problems," said Princeton-based attorney Jodi Bouer, whose practice helps autistic patients use insurance. Autism New Jersey, an advocacy group in Robbinsville, has collected complaints from 25 families about mandated coverage, said the group's Elena Graziosi.

In Pennsylvania, the prevalence of complaints is harder to gauge because the law also compels Medicaid, insurance for the poor, to cover autism services. Providers who don't get paid by private insurers will often just bill Medicaid. This masks the full extent of coverage issues, said David Gates, director of policy for the Pennsylvania Health Law Project.
...
But some insurers avoid covering therapies a child can get at school, including ABA, said Bouer, dumping the costs onto public schools and other agencies.

An Insurance Case in Oregon

In Oregon, Willamette Week reports:

Providence Health Plan failed to follow federal and state law when it for years refused to cover an intensive form of therapy for autistic children, a U.S. District Court judge ruled today in Portland.

The families of two autistic children filed suit last year after being denied coverage for the therapy, called Applied Behavior Analysis. One family was able to pay out of pocket for treatment, but the other family couldn’t afford the costly care.

“We are ecstatic,” says Keith Dubanevich, the Portland lawyer who represented the families in this case. “This is a tremendous victoryfor people with disabilities not just in Oregon but across the country. It clearly says you can’t treat autism any differently. It’s a significant decision."

The 2013 lawsuit argued that Providence violated federal and state mental health parity laws that require mental disabilities to be covered the same way physical disabilities would be covered. Providence has argued that it doesn’t have to cover the treatment because it has a developmental disability exclusion in its policy.

But U.S. District Court Judge Michael H. Simon ruled that the company’s exclusion is illegal.

A few weeks ago, Portland's KGW reported on the case:


 

TV Coverage of North Carolina Mandate Bill

In High Point, North Carolina, WGHP reports on the the North Carolina mandate bill, which has stalled in the State Senate because of opposition by President Pro Tempore Phil Berger.

CBS Report on Rotenberg and Aversives

At CBS, Anna Werner reports: 

Jennifer Msumba is on the autism spectrum. For seven years, she was treated at the Judge Rotenberg Center in Canton, Massachusetts, where she received painful electric shocks aimed at modifying her behavior. She describes being strapped, spread-eagle to a restraint board and shocked multiple times before she left the center in 2009.

"It's so scary. I would ask God to make my heart stop because I didn't want to live when that was happening to me. I just wanted to die and make it stop," she told CBS News correspondent Anna Werner in an interview at her mother's home outside Boston. "I thought, they won't be able to hurt me anymore."

Msumba provided testimony to a U.S. Food and Drug Administration panel in April. The panel met to discuss a ban on using electrical stimulation devices to modify aggressive or self-injurious behavior in people with severe emotional problems and developmental disorders such as autism at the Judge Rotenberg Center, or JRC, the only known facility in the country that uses them.

News report on JRC here 
Extended interview with Jennifer Msumba here
 

California Medicaid

David Gorn reports at California Healthline:

State officials today said autism therapy clearly is a covered Medicaid benefit, and they hope to submit a state plan amendment by Sept. 30 to start the process to make it a Medi-Cal benefit for those under age 21.

According to René Mollow, deputy director of benefits and eligibility at the Department of Health Care Services, Medi-Cal children are entitled to applied behavior analysis -- known as ABA therapy.

"Right now we're working on the development of a state plan amendment. We want to engage the stakeholders in developing that," Mollow said. "We're looking to have it submitted at the end of September, and having it retroactive to July 1."

Medi-Cal children now receiving ABA therapy likely will have that care retroactively paid for by Medi-Cal.

Rand Paul and Autism

Previous posts discussed Sam Wessels, an Iowa kid with ASD who poses questions to presidential candidates.

At The Des Moines Register, Jennifer Jacobs reports on a Rand Paul town hall in Sioux City, Iowa:

A 12-year-old boy named Sam Wessels tried to pin Paul down on government aid for those with autism, like himself.

Wessels said he had been speaking to politicians since he was 5, starting with Sen. John McCain, "including your father, great guy by the way, and the current president twice. And they all promised to help me, but after seven years, little if anything has changed. Can you be the one we can really count on?"

Paul answered: "I'm going to give you an answer you probably have never gotten before. ... Here's the real answer. Government's never going to find — and I'm not saying government can't help, I support some government help for autism — but the answer's going to come from scientists. And politicians get in the way of most answers."

But where do the scientists get the money for autism research?  According to IACC, most comes from the federal government: 




Here the exchange between Wessels and Ron Paul:

ASD and College

A number of previous posts have discussed ASD college students. Paige Carlotti writes at Forbes:

The Harvard Review of Psychiatry recently released summaries of the latest findings in ASD research and highlighted that there is a significant upsurge of people with ASD arriving on college campuses. It is difficult to pinpoint just how great this increase is, however, because many students choose not reveal this disorder according to Jane Brown Thierfeld, Ed.D, co-Director of College Autism Spectrum, an organization of professionals who assist students with ASD and their families and author of “The Parent’s Guide to College for Students on the Autism Spectrum.” For every student receiving special services, there are 1-2 on that same campus who have not identified themselves to anyone, she says. According to Stephanie Pinder-Amaker, lead author of the review, we are only seeing the tip of the ice berg in terms of the number of these students seeking to access higher education.

Minnesota, Somalis, Vaccines, and Dysfunction

At The Minneapolis Star-Tribune, Dan Browning writes about dysfunction on Minnesota's Autism Spectrum Disorder Task Force:

Brad Trahan, a parent from Rochester, chaired the group until he resigned in June 2013, writing to House Speaker Paul Thissen that he could no longer tolerate what he called false allegations and complaints filed against him by Idil Abdull — the task force member who nominated him for the job.

Abdull, of Burnsville, founded the Somali American Autism Foundation. Both she and Trahan have children diagnosed with autism, and both have become tireless advocates for families affected by the disorder.

...

In an interview, Abdull said she opposed the [insurance mandate] bill because it did nothing for poor children, many of whom are on Medicaid, and did not apply to self-insured health plans run by many large employers. “Every child should be on the same bus at the same time for the same thing — otherwise, we don’t approve it,” Abdull said.

Abdull also parted ways with her colleagues over a $300,000, grant application by the state Health Department to help pay for autism services. The task force voted to endorse the grant, and Trahan wrote a letter of support stipulating that the money should be distributed in a way that reaches “the underserved communities with the most disparities (Native American, Somali, Hmong, African-American, Rural, Hispanic).”

That failed to satisfy Abdull. “Unless you put a specific dollar sign, support could be $2,” she said. “I wanted specific dollars … going into minority-based organizations. They’re going to do the legwork of going into communities of color.”\

The rancor has stung several other task force members, including Barb Dalbec, who manages the Health Department’s section for children with special needs. Abdull called her a “village idiot,” and has demanded that she be fired. Dalbec declined to comment, and a department spokesman said a complaint filed against Dalbec was closed without any disciplinary actions; records also show that Dalbec received a state award for leadership this year.

Matt Carey writes at Left Brain/Right Brain:

Autism in the U.S. Somali Community has gathered significant attention in recent years (as has autism in other Somali communities outside of Somalia, for example in Sweden). Most of the attention in the U.S. can be traced back to vigorous advocacy by people like my fellow IACC public member Idil Abdul. Not all attention is good. For example, Minnesota Somali parents received a lot of attention from groups promoting the failed vaccine/autism link. When news of the possibly high prevalence in the Minnesota Somali community arose, David Kirby used the story to promote the idea of vaccines causing autism.Generation Rescue brought in Andrew Wakefield to talk to Somali parents in closed door meetings.

With the discussion of vaccines and autism comes fear and with fear of vaccines comes a reduced uptake. One recent story reports that the MMR uptake in the Minnesota Somali community dropped from 90% to 54% in the past 10 years. Sadly, that same story discusses how the Minnesota Somali community is presently involved in one of the largest measles outbreaks in recent history.

The question is, what are the views of the Somali community on vaccines and autism? To answer that, a new study has just been released: Childhood vaccine beliefs reported by somali and non-somali parents. (note the lack of capitalization of Somali is in the original). The full paper is available online ... To answer the question–yes, Somalis in Minnesota do think that the MMR causes autism more than their non-Somali counterparts. Nearly 5 times more likely. But, the majority do not believe–about 35% of Somali parents and 8% of non-Somali parents believe that autism is caused by vaccines

Autism CARES Passes Senate

A Thursday release from Senator Robert Menendez (D-NJ):

U.S. Senator Robert Menendez (D-NJ) today hailed the Senate's passage of the Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act, which is the identical companion to Menendez’s Senate bill, S. 2449. The unanimous Senate passage was the final Congressional step needed to get the bill to the President’s desk to be signed into law.

“The Senate’s action today ensures these vital autism programs are reauthorized and continue providing research, services and supports individuals with autism and their families have come to rely on,” said Sen. Menendez. “The Autism CARES Act is a model of bipartisan, bicameral cooperation – and I am proud I was able to work on it and look forward to seeing the President sign this critical legislation into law.”

According to a recent report by the CDC, autism rates climbed nearly 30% between 2008 and 2010, to 1 in 68 children with an Autism Spectrum Disorder, from 1 in 88 children. In New Jersey, that prevalence is 1 in 45 children.

Senator Menendez is the leading advocate in Congress for individuals with autism and their families, having secured the passage of the 2011 reauthorization of the Combating Autism Act. Additionally, he authored the Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. Several key policies from this legislation are incorporated in the Autism CARES Act.

Research on Optimal Outcomes

Ruth Padawer writes at The New York Times Magazine:

While subsequent studies did not reproduce Lovaas’s findings, researchers did find that early, intensive behavioral therapy could improve language, cognition and social functioning at least somewhat in most autistic children, and a lot in some. A few studies claimed that occasionally children actually stopped being autistic, but these were waved off: Surely, either the child received a misdiagnosis to begin with or the recovery wasn’t as complete as claimed.

In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism. The first, led by Deborah Fein, a clinical neuropsychologist who teaches at the University of Connecticut, looked at 34 young people, including B. She confirmed that all had early medical records solidly documenting autism and that they now no longer met autism’s criteria, a trajectory she called “optimal outcome.” She compared them with 44 young people who still had autism and were evaluated as “high functioning,” as well as 34 typically developing peers.

In May, another set of researchers published a study that tracked 85 children from their autism diagnosis (at age 2) for nearly two decades and found that about 9 percent of them no longer met the criteria for the disorder. The research, led by Catherine Lord, a renowned leader in the diagnosis and evaluation of autism who directs a large autism center and teaches at Weill Cornell Medical College, referred to those who were no longer autistic as “very positive outcome.”