TV Report on Autism and Marijuana

Previous posts have discussed the use of marijuana in the treatment of autism. In Oregon, KPTV reports:

 An Oregon family has turned to medical marijuana to manage their son's severe autistic rage.

"It was indescribable, it was horrifying," said Jeremy Echols, father of 11-year-old Alex. "When you've got no other options, are you honestly gonna say no?"

Eleven-year-old Alex Echols is severely autistic, and his doctor said Alex's self-destructive behavior is brought on by Tuberous Sclerosis, a rare, genetic disorder that affects about 50,000 people in the U.S. The disorder causes unregulated growth of non-malignant tissue in organs. In Alex's case, his neurologist said growths in Alex's brain have led to seizures and autism.

"Alex cannot communicate using words and that leads to behavior that is very frustrating for him and for those caring for him," said Dr. Colin Roberts, a pediatric neurologist at Doernbecher Children's Hospital in Portland.

It is unfortunate that the print version of the story uses a loaded phrase such as "autistic rage." It summons up the myths that surfaced in the wake of the Newtown massacre.

  KPTV - FOX 12

Support for ASD Adults

Previous posts have discussed the often-underserved needs of adults on the spectrum, including employment assistance. A release from Advancing Futures for Adults with Autism (AFAA):

Advancing Futures for Adults with Autism (AFAA) has selected the inaugural winners ofAFAA Applauds, a national initiative recognizing innovative, high-quality support programs for adults living with autism spectrum disorders (ASDs).

AFAA will promote the winning programs as cutting-edge models for other organizations across the country to replicate. The goal is to meet the increased demand for effective services, provide accurate information on promising practices and generate awareness about ASDs and adult concerns.

Through a competitive application process, AFAA selected six organizations for exemplary results-oriented employment, residential support and community life programs. Community life includes social skills, transportation, recreational, safety, spirituality or other categories of service that improve life experiences and outcomes for those living with autism.

The winners:

• Autism Services Inc., New York Autism Services Inc. helps individuals with autism become involved in the visual and performing arts and has improved their quality of life.

• Chapel Haven, Connecticut Chapel Haven’s supported living program assists individuals with autism as they obtain jobs, gain a network of friends and participate in a vibrant community life. Chapel Haven’s program sets a high standard for excellence.

• Eden Autism Services, New Jersey Eden Adult Services’ multifaceted adult employment program promotes the meaningful engagement of adults with autism in their communities through paid employment and active volunteer service. The program has created successful employment opportunities for individuals with autism.

• Family Adult and Child Therapies (FACT), California FACT’s Generating All Possibilities 4-year program supports individuals with autism as they make informed decisions about work, college and where to live. The program helps prepare adults with autism for the future.

• Partnerships with Industry (PWI), California  PWI provides adults with autism the opportunity to find employment. PWI has helped individuals with autism reach their potential and experience independence.

• The Friendship Circle, California The Friendship Circle fosters spiritual, social, and educational experiences for individuals with autism. The program has created activities that bring value to the lives of individuals with autism.

Autism Speaks v. Cuomo Administration Rule

Autism Speaks has come out against the a Cuomo Administration rule effectively gutting New York's insurance mandate:

Autism Speaks today issued the following statement in response to new emergency regulations issued by the New York Department of of Financial Services regarding the licensure of ABA practitioners:

"New emergency regulations issued today by the Department of Financial Services (DFS) to implement the 2011 autism insurance law still do not address a prime concern of thousands\ of New York families. These rules continue to ignore the clear direction contained in the statute that behavior analysts, certified by the Behavior Analyst Certification Board (BACB), are qualified to provide applied behavior analysis and be compensated by health insurers under the law.

"The DFS rules continue to require state licensure of behavior analysts despite the fact that state licensure does not yet exist in New York State for this profession. Because of this, Autism Speaks, in working with legislative sponsors to enact the 2011 statute, specifically required that behavior analysts be certified by the BACB. The BACB certification is a national 'gold standard' for behavior analysts, but New York State continues to narrowly interpret the statute to the detriment of those seeking health coverage under the new law.

"Autism Speaks will continue its work and use all available means at its disposal to change this regulation so that it complies with state law."

Vicki Knapp, President of the New York State Association for Behavior Analysis, explained to me in an email:

Our biggest concern is this:

“(h) Certified behavior analyst means a licensed provider who is certified as a behavior analyst pursuant to a behavior analyst certification board.
(i) Licensed provider means a psychiatrist, psychologist or licensed clinical social worker, or an individual licensed or otherwise authorized under Education Law Title VIII to practice a profession for which ABA is within the scope of that profession”

The issue here is that they define a certified behavior analyst as “…a licensed provider who is certified as a behavior analyst…” Behavior analysts often do not hold a license in another profession. The fact that the Department of Financial Services defined a behavior analyst as holding a license in psychology, psychiatry or social work is in direct conflict with the Autism Insurance Law, which lists Behavior Analysts as qualified providers, in their own right. If the DFS regs don’t change, that leaves only about 40 people in New York to fill that role—clearly not enough. If the regs change to allow BCBAs to provide without a supplementary license, that opens the field up for over 400 people to provide that service. 400 is still not quite enough, but better than 40.

More on the New York Rule

The Age of Autism has an action alert on a New York rule that would effectively gut the state's insurance mandate:

Just weeks before the New York autism insurance reform bill went into effect on January 1 the Cuomo administration issued an erroneous interpretation of the law that guts the only real step forward for families dealing with autism.

Governor Cuomo’s Department of Finance has issued an “emergency” rule finding that will not recognize the credentials of Board Certified Behavior Analysts (BCBA) for insurance billing purposes, so unless your behavior analyst also has a New York license as a physician, psychologist or other licensed professional they will not be allowed to bill insurance companies. This interpretation reflects neither the letter nor intent of the law Governor Cuomo signed with much media attention and fanfare at the end of 2011.

Thousands of students in New York schools receive ABA as required in their IEPs provided by BCBAs, and those BCBAs are paid with tax dollars. Yet when it comes to insurance company dollars all of a sudden BCBAs aren’t properly credentialed. This is rank toadying to the insurance companies.

New Yorks, and New Yorkers only please, click on the T alert to send an email to the Governor and ask him to stop delaying therapy for some of New York’s most vulnerable students.

And please call the Governors office and politely ask the staffer to tell the Governor to do the right thing and provide ABA for New York’s students with autism.

Please share this email with friends and family and please post to Facebook and other social networks.

Governor Cuomo will probably run for president. He will have a hard time if the disability community sees him as an opponent.

Shortage of Child Psychiatrists

Apparently in response to Newtown,  the media are reporting on the shortage of child psychiatrists.  Unfortunately, some of the resulting stories refer to autism as a "mental illness."

From The Des Moines Register (via USA Today):

More Iowa children are being diagnosed with mental illness than in past decades, especially autism and attention deficit/hyperactivity disorder. The increase in children needing mental health care and an inadequate system to help them are among an array of challenges facing this generation of Iowa's kids.

"There really isn't a children's mental health system," said Dr. Jennifer McWilliams, a child psychiatrist at the University of Iowa. "So much needs to be improved — I don't even know where to begin."

From The Bangor Daily News:

For at least 30 years, experts have been sounding the alarm about the shortage of child psychiatrists across the country. In 1980, the Graduate Medical Education National Advisory Committee said so many children and teens were projected to need help that the U.S. would require 8,000 to 10,000 child and adolescent psychiatrists by 1990. In 1990,the Council on Graduate Medical Education said the country would need 30,000 by the year 2000.

Neither goal was met.

In 1999, the surgeon general said only about 20 percent of mentally ill children received mental health services and only a fraction of that 20 percent got that help from a child psychiatrist. Today, according to the American Medical Association, there are about 7,600 practicing child and adolescent psychiatrists in the county, less than experts said the U.S. would need 23 years ago.

Urban areas typically have the easiest time finding and keeping psychiatrists. Rural areas struggle the most.

And Maine is very rural.

“I see a huge need,” said Sandra Fritsch, a child psychiatrist and president of the Maine Council of Child Adolescent Psychiatry.

She created a map to show the number of child psychiatrists in each county in Maine. In 2011, Cumberland County had the most at 22. Androscoggin County had four.

Oxford, Franklin and three other counties had none.

The New Haven Register quotes  Gregory Fritz, director of child and adolescent psychiatry at the Brown University School of Medicine and academic director for Bradley Hospital in Providence, R.I..  Fritz identifies three reasons for the shortage:

It takes a minimum of five years in medical school to become certified in both adult and child psychiatry and can be longer, similar to some higher-paying specialties. More years in school mean higher student loans.

“The medical students to my eye now pay a little more attention to income … and the reason is their debt is much higher,” Fritz said. He said child psychiatrists earn about the same as general practitioners. So, many students who want to work with children go into pediatrics instead.

Insurance reimbursements are given for the service, not the time spent on evaluations or medication sessions. “The problem is it takes longer to do it for a child,” because parents and teachers must be consulted. “Fundamentally, the payment per hour is less,” Fritz said.

Finally, “there is still significant stigma about mental illness and psychiatric patients, and that stigma also applies to those who treat those stigmatized patients,” Fritz said.

Not surprisingly, the insurance companies screw up:

 The Register called several doctors’ offices listed on Aetna’s website as “Psychiatry, child and adolescent.” Of those who responded, all said they treat adolescents only, despite being listed as treating children as well.

“I will see about age 15 and my partner will see a little bit younger; he’ll see 14,” said Dr. Douglas Berv of Hamden. “I’m not trained or certified with children and that’s where you’re running into a problem.”

He said of the rosters of providers issued by insurance companies, “Their lists are never correct.”

Another on Aetna’s “child and adolescent” list, Dr. Robert Ostroff, head of adult psychiatry at the Yale Psychiatric Hospital, said he does not treat children and has heard of the problems in finding doctors who do.

“It’s been very hard to get my insured patients’ children seen by child psychiatrists,” he said. “I have people who can’t afford to pay out of pocket. … It’s a real problem.

Mandate Problems

Putting a mandate in place is a beginning, not a conclusion.  Problems crop up, as several examples illustrate.

In New York, The Syracuse Post-Standard provides an update on rulemaking by the state’s Department of Financial Services.

The issue comes down to differences between a law and the regulations to implement it, and the differences between certification and licensing.

The law signed by Gov. Andrew Cuomo in 2011 requires insurers to pay up to $45,000 a year for autism services that include a form of extended therapy called applied behavior analysis. That therapy breaks complex skills into small steps to improve skills and address concerns related to eating, feeding sleeping, toileting and challenging behaviors.

New York's law said that the therapy must be provided by or at least supervised by a certified behavior analyst. New York has roughly 750 board certified behavior analysts. The regulation requiring licensing cuts the pool of eligible supervisors to 43. [emphasis added]

The state Department of Financial Services, which oversees the insurance and banking industries, has not yet responded to a request for comment.

During the 2011-12 election cycle, the insurance  industry made $404,150 in campaign contributions to Cuomo, who appointed the head of the department. Judith Ursitti, Director of State Government Affairs for Autism Speaks, says that industry lobbying may have swayed the regulatory decision.

“The reason I say that is because we’ve passed autism insurance laws in other states, and once we pass the law and begin working on implementation , this particular roadblock seems to be popping up. We’ve had similar situations in Rhode Island and Virginia where we have worked through the process and resolved it.”

Autism service providers are encouraging families of children with autism to write the Department of Financial Services’ Superintendent, Ben Lawsky, to encourage him to “implement the law as it was intended” [emphasis added]

 In Michigan, MLive reports:

Michigan’s new program allowing health insurance companies to be reimbursed for paid claims related to autism coverage is off to a slow start.

The reimbursement provision for carriers and third-party administrators was part of a compromise that helped the autism coverage plan win approval in the Michigan Legislature and be signed into law last year. The law mandates that insurance companies provide coverage for autism treatment and diagnosis. The reimbursement is designed to help companies offset those costs.

The state’s autism coverage fund is allocated $15 million for the current fiscal year that began in October -- but only two claims had been submitted and paid out to insurance companies as of this week, according to the state’s Department of Licensing and Regulatory Affairs. The total claims paid were a little more than $3,000 combined.

In Ohio, The Toledo Blade reports on a contention that actions by Governor John Kasich may violate the state constitution.

The Ohio Health Care Freedom Amendment was overwhelmingly supported by voters in 2011 and was largely seen at the time as a message to the federal government opposing President Obama’s health-care law. But the amendment also prohibits Ohio from mandating specific types of coverage, according to Maurice Thompson, executive director of the 1851 Center for Constitutional Law.

The last legislative session ended last month without final passage of a bill that had bipartisan support to require health policies issued in the state to include coverage for autism, a broad category of disorders affecting child brain development. The disorders can affect communication, attention, and behavior, among other things.

When the bill did not pass, in part because of opposition from business, Mr. Kasich ordered such coverage to be included in state policies for 39,000 government employees. He also sent the Obama Administration a written “comment” on proposed federal rules for implementation of the new Patient Protection and Affordable Care Act in Ohio that his office said have the effect of including autism spectrum disorder as part of the minimum coverage private insurers would have to provide under the law.

The governor’s action may not have technically violated the language of Ohio’s 21st right under its constitution’s Bill of Rights, but it violates the spirit of the amendment, Mr. Thompson said.
“We want to litigate that if we can,” Mr. Thompson said. “We’d like to get the autism mandate off the books because it can be highly destructive to the health-care market and small business. It precludes freedom of choice and violates the spirit of the health-care amendment.”

Insurance Mandate Action in California and Nebraska

More insurance mandate legislation is under way in the states. Autism Speaks reports on California:

Senate President pro Tem Darrell Steinberg has introduced a bill (S-126) to extend California's autism insurance reform law another five years to July 2019. The current law, which Steinberg also sponsored, stops taking effect July 1, 2014.

The law requires state-regulated health plans to cover behavioral health treatment, such as Applied Behavior Analysis, consistent with other benefits covered under their policies. Insurers are also required to maintain an "adequate" network of ABA providers.

The bill awaits committee assignment.

The organization also supports legislation in Nebraska:

Autism Speaks today endorsed LB-505, a new autism insurance reform bill, which would bar state-regulated health plans in Nebraska from refusing to cover the diagnosis and treatment of treatment of autism. Nebraska is now just one of 18 states that has yet to enact reform through legislation.

Sponsored by state Senator Colby Coash, the bill would require up to $70,000 a year in coverage for behavioral health treatment, such as Applied Behavior Analysis, for the first three years of treatment. The limit would be $20,000 annually thereafter until the age of 21.

Families paying thousands of dollars a year in insurance premiums would gain coverage for the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals up to the age of 21. During the past year, the reported incidence of autism has risen from 1 in every 110 American children to 1 in 88; a more recent South Korea study showed a 1 in 38 prevalence rate.

Insurance, Regulation, and Behavior Analysts

In West Virginia, WHTC reports:

Although the state has seen an increase in registered ABA specialists since legislation passed that helps pay for children’s treatment, across the state there is a shortage. 

According to Bright Future’s records there are only 14 practicing applied behavioral analysts in the state. The number of children diagnosed in West Virginia and across the country is rising.

According to the U.S. Centers for Disease Control and Prevention about one in 88 children are diagnosed to be on the autism spectrum, ten times the amount from forty years ago.

In Massachusetts, Governor Deval Patrick recently signed legislation on licensure. The Lowell Sun reports:

 LICENSE AND REGULATE BEHAVIOR ANALYSTS (S 2379): Establishes a state board to test, license and regulate the state's growing number of mental-health professionals known as behavior analysts. The measure also sets educational requirements that an applicant must fulfill to qualify for a license. Behavior analysis ranges from treatment of individuals with autism and developmental disabilities to behavioral coaching and behavioral psychotherapy.

According to the Behavior Analyst Certification Board, behavior analysts "help build the skills and achievements of children in school settings; enhance the development, abilities and choices of children and adults with different kinds of disabilities; and augment the performance and satisfaction of employees in organizations and businesses."

Worm Therapy?

There are many "alternative" therapies for autism.  Most lack scientific foundation and some are dangerous.

The latest is -- no kidding -- worm therapy, based on the questionable "inflammatory disease" theory.  Fox News reports:

It’s a medication technique that many may be reluctant to swallow, but it’s slowly proving to be a valuable tool in treating autoimmune disorders – ingesting the eggs of parasitic worms.

The use of this alternative medicine is all part of the hygiene hypothesis – the idea that ‘harmful’ organisms might actually be protecting our immune systems. In the 19th century, people did not bathe as frequently as they do now, and many lived among ‘filth’ – but autoimmune diseases were virtually non-existent. Subsequently, those who currently live in third-world countries also have a lower rate of developing autoimmune diseases.

Dr. Eric Hollander got the idea to study the use of the hygiene hypothesis to treat autism when he noticed one of his patients’ behavior improve while self-medicating with Trichuris suis ova (TSO), the eggs of a whipworm.

Over the past 20 years, doctors have noticed parasitic worms help alleviate symptoms for patients with Crohn’s disease, but other disorders, like multiple sclerosis and type 1 diabetes are also being studied.

Some in the community are a tad skeptical. From The Autcast:

 Five gross things from Jessica Ryen Doyle's article for FoxNews.com about using worms to treat autism.

1. Using worms to treat autism is gross:

Dr. Eric Hollander got the idea to study the use of the hygiene hypothesis to treat autism when he noticed one of his patients’ behavior improve while self-medicating with Trichuris suis ova (TSO), the eggs of a whipworm.

2. Telling people how to access a treatment that has not been approved by the FDA is gross:

The Food and Drug Administration has not yet approved TSO therapy, but there are ways to buy the product – either online or by traveling to another country.

3. Calling an autistic teenager a child is gross. The guy Hollander is talking about is sixteen:

“So based on the fact that this child had substantial improvement – it didn’t cure the autism, but it had a major impact on repetitive and disruptive behaviors,” Hollander said. “So, we designed a study to test this in a more systematic fashion.

4. That doctors are actually planning to put worm eggs in autistic people and study what happens is gross:

Hollander said the trial will focus on 10 adults between the ages of 18 and 35, who are of normal intelligence with good verbal skills – that way the participants can describe the effects. Participants will also have allergies or a family history of autoimmune diseases.

During the first phase of the trial, participants will either get TSO (administered in a clear, odorless liquid) or a placebo for 12 weeks. There is a washout period of four weeks, after which patients will switch to the opposite (if they first received a placebo, they’ll get the TSO product). This way, everyone has the opportunity to get active medicine and a placebo.

5. The Simons Foundation is gross for funding this study.

 

Further Coverage of the Optimal Outcome Study

Time has a misleading headline -- "New Study Suggests Autism Can be ‘Outgrown’" -- but some useful content:

But while the research suggests that some children do extremely well, it’s also important not to give false hope or add to the guilt felt by some parents over their children’s prognosis, the researchers stress. “This is generally a lifelong disability,” says Fein. “I’ve seen thousands of children who had the best possible interventions continue to have significant intellectual disability and severe language deficits and we don’t know how to remediate those things.”

Autism advocates have other serious concerns about the research. “We don’t think the idea that people ‘outgrow’ autism—or can be made through treatment to become non-autistic— is accurate,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. Instead, he says study participants are likely “passing,” or acting non-autistic in order to fit in. Inside, they may be experiencing the same urges to engage in repetitive behavior and endlessly talk about their obsessions, but they have learned to channel their intense drives into repressing this and behaving the way normal people expect.

The Wall Street Journal, while also using the o-word, includes a note of caution:

Based on previous studies, Dr. Fein estimates 10% to 20% of children who were diagnosed with autism may achieve optimal outcomes.

Some experts caution that even people who no longer meet diagnostic criteria for autism may have subtle, residual idiosyncrasies.

Fred Volkmar, director of the Child Study Center at the Yale University School of Medicine, who wasn't involved in the recent study, described one former patient who has a master's degree, goes to work and lives on his own, but every night he eats the same meal, canned fish, reads on the computer about software and then goes to bed.

In many ways he could be considered as having an optimal outcome, said Dr. Volkmar. At the same time, the man wants to have a girlfriend but doesn't know how to talk about subjects outside of his one narrow interest, and he serves canned fish to anyone he has over.

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"
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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."
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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.

Nixon and Autism

Today would have been Richard Nixon's 100th birthday.  What did he have to do with autism?  Some have speculated that his verbal precocity, social awkwardness, and physical clumsiness may have been signs of Asperger's -- but that proposition is unprovable.  But what is clear is that he signed several measures that shaped policy for people with autism and other disabilities:

• Objecting to parts of the bill, Nixon reluctantly signed the Elementary and Secondary Education Act Amendments of 1970 (P.L. 91-230), which created a separate Act, the Education of the Handicapped Act (EHA). Part B authorized  grants to states to assist them with programs for the education of children with disabilities.  
• Nixon signed the Developmental Disabilities Services and Facilities Construction Amendments of 1970 (P.L. 91-517), which  contained the first legal definition of "developmental disabilities," includedbroad responsibilities for a state planning and advisory council to plan and implement a comprehensive program of services for persons with developmental disabilities.  The law also authorized grants to support interdisciplinary training in institutions of higher education of personnel providing services to persons with developmental disabilities.
• After vetoing earlier versions, Nixon signed the Rehabilitation Act of 1973 (P.L. 93-112). Sections 501, 503 and 504 prohibited discrimination in federal programs and services and all other programs or services receiving federal funds. Section 504: “No otherwise qualified handicapped individual in the United States, shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

Autism and the Affordable Care Act

Autism Speaks finds that fewer than half the states have planned to include ABA coverage in their new health care exchanges.

"While the picture remains somewhat murky, the unequivocal support needed by families dealing with autism clearly is missing," said Stuart Spielman, Autism Speaks' senior policy advisor and counsel. "We have an autism epidemic. Merely having some form of health insurance available will not address this epidemic."

The analysis was conducted on the "essential health benefits" benchmark plans each state was to submit to the U.S. Department of Health and Human Services (HHS). Autism Speaks reviewed information on the website of the Center for Consumer Information and Insurance Oversight, the part of HHS that wrote the essential health benefit rules, and found that 17 states were including coverage for behavioral health treatments and that coverage was implied by another five states.

In addition, Ohio Governor John Kasich in late December announced that his state would include ABA and other autism therapies as part of its essential health benefits package.

"Failing to categorize behavioral health treatment for autism as a mandatory element of the EHB package is not only bad health policy, but bad statutory construction as well," Autism Speaks told HHS in formal comments. Congress clearly stated when it enacted the ACA in 2010 that coverage for behavioral health treatment had to be one of the 10 essential health benefits each state was required to include as part of their new health care exchanges for the small group and individual markets

The 17 states determined to include behavioral health treatment include:

• Arizona
• Arkansas
• California
• Indiana
• Kentucky
• Louisiana
• Maine
• Massachusetts
• Missouri
• Montana
• Nevada
• New Hampshire
• New York
• Texas
• Vermont
• West Virginia
• Wisconsin

The five states where the coverage may be included, but is unclear, are:

• Colorado
• Connecticut
• Illinois
• New Jersey
• New Mexico

Ava's Law in Georgia

A video in favor of a Ava's Law, a proposed insurance mandate in Georgia:

 

Special Education in California

In California, the Legislative Analyst's Office has issued a report titled Overview of Special Education in California. Over the past decade, the prevalence of specific learning disabilities has dropped 20 percent while the prevalence of autism has increased 241 percent.

As shown in Figure 8, federal IDEA funds typically cover less than 20 percent of overall special education expenditures. This is notably lower than the amount the federal government originally committed to provide in support of special education services. The IDEA expresses intent to appropriate funding for each SWD up to 40 percent of the national average expenditure level per K-12 pupil, which would equate to roughly 40 percent of California’s overall special education expenditures. The federal budget, however, has never come close to providing states with this amount. We estimate that California would receive roughly $2 billion more annually if the federal government were to “fully fund” the intended level articulated in the IDEA.

Florida Appeals Court Order

The Miami Herald reports:

Already facing sharp criticism over policies that have resulted in the rationing of care to severely disabled children, Florida healthcare regulators are challenging a federal judge’s order that the state provide a costly — but potentially life-changing — treatment to children with autism.

Last spring, U.S. District Judge Joan Lenard struck down the state’s refusal to pay for applied behavior analysis (ABA) for autistic children, calling the state’s policy “arbitrary, capricious and unreasonable.”

The court case involved three autistic youngsters — then-5-year-old K.G., 2-year-old I.G. and 4-year-old C.C. — whose efforts to obtain behavioral therapy had been denied by the state’s Medicaid insurance program for needy and disabled people. Lenard ordered that the three children be given the care they sought — and that the state provide such care to other autistic children, as well.

The state Agency for Health Care Administration has appealed the order, and, in a pleading submitted in November, argued that the ruling strips the state of its ability to weigh requests for the therapy on a case-by-case basis to ensure the treatments are “medically necessary.”

“There is no evidentiary support for the district court’s conclusion that [behavior analysis] services are medically necessary for all autistic Medicaid recipients under 21,” the brief said. “In fact, the evidence established that ABA treatment is not medically necessary, or even effective, in all cases. Some children do not respond to ABA treatment at all, and, in all other cases, the efficacy of ABA treatment diminishes rapidly after early age.”

Miss Montana and a Vote

KRTV in Great Falls, Montana, reports:

On Saturday, Cut Bank resident Alexis Wineman will take the stage in the Miss America Pageant, but for now she is hoping to garner enough votes online to become a finalist in the contest.

In the Miss America online video contest, Wineman explained why she feels she should be the next Miss America.

Wineman's platform issue, titled "Normal is Just a Dryer Setting: Living with Autism," focuses on her life since she was diagnosed with a form of it in 7th grade. She said she hopes to bring national awareness to it.

"Most people do not understand what autism is, and one in 88 people having some form of autism, this understanding is becoming more and more necessary," Wineman said in the video.
Wineman is also keeping friends, family and fans up to date on her Facebook page, where she said she has enjoyed walking the runway at the Fashion Show Mall in Las Vegas and making appearances at various events.

She has also been chosen as one of 14 contestants to be featured on the show "20/20."
Click here to see her video and cast your vote.

Problems with Public School

At The Atlantic, Amy Mackin writes of her son's problems with the public school system:

Unfortunately, again, no one was paying attention during the most difficult parts of Henry's day—the unsupervised social settings. Henry suffered a serious breakdown that year. He hadn't told anyone, but, as it turned out, he had been bullied on the school bus for months.
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The autism spectrum is wide and varied, and every autistic person is unique. People like Henry need someone looking out for them, particularly in overwhelming environments like school. The problem is that public schools are mostly worried about academics and test scores. They have to be—their success in those areas dictates the percentage of state and federal funding they get. Few schools have designated psychologists (most often, multiple schools share the same one). Teachers aren't psychologists, and asking them to be is not fair.

This puts kids with Asperger's in a particularly precarious spot. Many of these children are above average academically, even gifted in certain subjects. Special-education departments tend to focus on helping students with learning disabilities. But kids with Asperger's often don't need academic support. They need help navigating social interactions. When typical middle school boys are showing interest in girls and competitive sports, their Asperger's counterparts are often still playing with toys and building with Legos. The Tooth Fairy and Santa Claus are still very real for many of these kids, even as they approach the teen years.

France, Autism, and Psychoanalysis

Previous posts have discussed the dismal state of autism treatment in France.  A film titled "The Wall,"by Sophie Robert, explained the ongoing grip of discredited psychoanalytic theories in that country.  Kristina Chew writes:

Robert’s film has been part of an ongoing effort to change the understanding and treatment of autism in France. After the organization Autism Europe lodged a complaint against France in 2002 for failing to educate autistic children, the European Committee of Social Rights said that “France has failed to achieve sufficient progress” in educating autistic children and had made autistics an “excluded group.”

Seeking to help their children, more parents in France have been taking action, lobbying politicians like Daniel Fasquelle, a member of France’s parliament who says in the BBC that it is an “an out-and-out disgrace” that France’s medical community should continue to swear by psychoanalysis as the treatment for autism. David Heurtevent’s Support the Wall project continues the fight for the rights of autistics in France to education and services.

It is perhaps not surprising that the use of psychoanalysis to treat autism should be making its last stand in France, where Freudianism has long been applied not only to the treatment of mental illness but also to the study of literature, philosophy and radical politics. In a new year, it is more than time for the French medical community to acknowledge that it is decades behind the rest of the world in understanding what autism is and in treating and educating autistic individuals in ways that will actually help them achieve all they can.

Obama Signs Bill with TRICARE Provision

Previous posts have discussed a measure enabling retired TRICARE enrolees to get coverage of ABA.  Autism Speaks reports:

President Obama has signed bipartisan legislation creating a one-year pilot program expanding ABA care to all military families through TRICARE, the Pentagon's healthcare program, a critical first step in improving services for military families raising children with autism.

"Autism Speaks thanks President Obama for taking this sensible step for military families, along with our Congressional champions Rep. John Larson of Connecticut and Sen. Kirsten Gillibrand of New York," said Peter Bell, Autism Speaks executive vice president for programs and services. "At the same time, we restate our intention to make these medical services permanent. Military families who sacrifice so much deserve access to the benefits they have earned."

The TRICARE provision was included as an amendment to the National Defense Authorization Act voted out of Congress in December. Both the House and Senate had approved a permanent expansion of ABA benefits providing for prescribed levels of care, but the measure was whittled down to a one-year pilot program when the bill was finalized in conference committee.

The Department of Defense (DoD) currently restricts ABA coverage to active duty members through the supplementary ECHO program which limits annual benefits to $36,000, covering just 6 to 11 hours of therapy a week, well below the recommended level of care. Because of specific policy shortfalls, ABA care terminates upon retirement, including services for children of wounded warriors retired due to injuries sustained in combat.

Service members have said they have re-enlisted for additional tours of duty simply to maintain coverage for their children with autism.

The one-year pilot program, which is for all TRICARE eligible beneficiaries with autism, is to start within 90 days. Within 270 days, DoD will then be required to report to Congress on costs, a comparison of the pilot program with ECHO and any recommended legislative remedies. The legislation offers no guidance on coverage limits or parameters of the program.

"Autism Speaks will closely monitor the DoD’s implementation of the pilot program on a variety of fronts, including its coverage of ABA Technicians and BCaBA’s," said Karen Driscoll, Autism Speaks’ associate director for federal government affairs and military relations, and a Marine Corps spouse.

"Development of effective policy is essential," she said. "It is critical that TRICARE work with stakeholders, including military families and subject matter experts, to ensure the final policies regarding coverage and delivery of ABA care are consistent with best practices."

OPM, ABA, and Maryland

Previous posts have discussed the decision by the federal Office of Personnel Management to allow (but not require) coverage of ABA under the Federal Employee Health Benefits Program.

The Baltimore Sun reports:

Autistic children of federal workers in 22 states begin receiving insurance coverage this month for a key behavioral treatment, under a decision by the Office of Personnel Management.

Maryland, home to the third-largest population of federal workers in the nation, is not one of them.

"These families desperately need the best coverage for their kids," said Stuart Spielman, senior policy adviser and counsel for Autism Speaks. He said the advocacy group would petition the OPM to expand its coverage as quickly as possible.

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But Jacque Simon, policy director at the American Federation of Government Employees, said the mix of therapies and medication is not a substitute for applied behavior analysis. Simon said the union has fought for decades for coverage. 

"It's long been recognized as the most effective treatment," she said. "It's been absolutely horrible on the part of OPM to delay coverage for this long. It's really a half-measure, but it's better than nothing."