FDA on Hyperbaric Oxygen Treatment

Some people have tried to use hyperbaric oxygen chambers to treat autism, even though evidence is lacking. An open letter from the Food and Drug Administration:

Over the last year, the FDA has become increasingly aware of hyperbaric oxygen treatment centers promoting hyperbaric oxygen chambers for uses that have not been cleared or approved by the FDA. Even though the FDA does not regulate the practice of medicine, we are concerned that patients may be choosing hyperbaric oxygen therapy (HBOT) over proven medical treatments without realizing that the FDA has only cleared HBOT devices for 13 specific indications, as outlined at the end of this e-mail. The FDA does not have any data supporting the safe and effective use of HBOT for treatment of any indications not included in this list.

The FDA urges patients to discuss this therapy directly with their health care providers to determine if it is an appropriate treatment option. To provide more information, the FDA has published an FDA Consumer Update: Hyperbaric Oxygen Therapy: Don’t Be Misled. We encourage you to share this article with your members. Additionally, if any of your members suspect they have been injured through use of hyperbaric oxygen chambers, we encourage them to submit a report through MedWatch, FDA’s Safety Information and Adverse Event Reporting program.

If you have any questions about this communication, please contact FDA’s Division of Small Manufacturers, International and Consumer Assistance (DSMICA) at DSMICA@FDA.HHS.GOV, or 800-638-2041, or 301-796-7100.

Thank you for your continued support.

Autism is not on the list of 13 indications.

More Risk Factors

Most scientific studies are careful to distinguish correlation and causation, but a casual reader of the news might scan recent stories and conclude that "everything causes autism."

From Time:

More research finds a family-based risk of autism among siblings, which raises the question of what parents can do to lower the risk among potentially at-risk youngsters.

Researchers from Aarhus University in Denmark report in the journal JAMA Pediatrics that children with an older brother or sister diagnosed with an autism spectrum disorder (ASD) are more likely to be on the spectrum themselves.

According to their study of about 1.5 million children born in Denmark between 1980 and 2004, those who had an older sibling diagnosed with autism had close to a seven-fold increased risk of developing autism as well. Siblings who shared the same mother and father had a 7.5 greater risk of having autism, whereas maternal half siblings had a 2.4 greater risk. Paternal half siblings didn’t have a statistically significant increase in risk.

From Healthline:

Expectant mothers should be tested for thyroid issues to reduce their child’s risk of developing autism and other complications, experts say.

New research published in the Annals of Neurology shows that mothers with low levels of the thyroid hormone T4, or throxine, are four times more likely to give birth to a child with autism. The more throxine deficient a mother is, the more pronounced her child’s symptoms can be, researchers said.

Scientists from the Houston Methodist Neurological Institute and Erasmus Medical Centre came to this conclusion after studying 4,000 Dutch mothers and their children. This finding coincides with previous research that shows a mother’s throxine levels influence a child’s neurological development.

“It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics,” lead author Dr. Gustavo Román, a neurologist and neuroepidemiologist who directs the Nantz National Alzheimer Center, said in a press release. “That gives me hope that prevention is possible.”

HealthDayNews reports:

Inducing or helping along labor in pregnant women may raise the risk for having a child with autism, particularly if that child is a boy, a new study suggests.

Experts, including the Duke University researchers, are quick to caution that there are often overriding medical reasons to induce or augment labor that should not be ignored because of any potential risk of autism.

Inducing labor involves stimulating contractions before labor has started through various means, and augmenting labor refers to the practice of helping labor progress more quickly with oxytocin (Pitocin), a drug that stimulates contractions.

... 

The new study, published online Aug. 12 in JAMA Pediatrics, is the largest to date that looks at autism risk and factors affecting labor and delivery. The findings don't prove that labor induction or augmentation cause autism, they just show an association. Exactly how labor induction could affect autism risk is unknown, but the drug oxytocin may play a role.

CBS reports: 

Other conditions during pregnancy have recently been linked to increased autism risk. An August 2012 study showed that mothers who were obese were 67 percent more likely to have children with the disorder compared to those who maintained a normal weight during pregnancy.

Taking the anti-epilepsy drug valproate has been linked to a five-fold higher risk of having a child with an autism spectrum disorder in an April 2013 study published in JAMA. Exposure to air pollution while with child was also significantly connected to higher rates of autism, a June 2013 Environmental Health Perspectives study revealed.

Bullying, FAPE, and the Department of Education

Disability Scoop reports:

In new guidance sent to educators across the country, federal education officials say that schools may be liable if they don’t properly address bullying of students with disabilities.

The guidance issued Tuesday in a four-page “Dear Colleague” letter details the unique obligations that schools have under the Individuals with Disabilities Education Act to ensure that children with disabilities are not victimized.

Specifically, officials from the U.S. Department of Education’s Office of Special Education and Rehabilitative Services said that bullying can lead to a denial of a student’s right to a free and appropriate public education, or FAPE, if it “results in the student not receiving meaningful educational benefit.

...

Several studies in recent years have suggested that children with disabilities more frequently encounter bullying. Findings released in 2012 from a nationwide poll indicated that 63 percent of kids with autism have been bullied. Another study published the same year found that about half of adolescents with autism, intellectual disability, speech impairments and learning disabilities were bullied at school..

Education Week reports:

The letter points to research on bullying and students with disabilities, including a 2012 paper in the Journal of School Psychology which found that students with observable disabilities and behavior disabilities reported being bullied more often than their typically-developing peers.

The department also cited a 2010 study in the Journal of Developmental Behavioral Pediatrics that surveyed 221 youth with varying disabilities and compared their experiences to 73 typically developing children. In addition to being at higher risk of bullying, that study noted that students with disabilities were also at risk of being ostracized from their peers.

To that point, the guidance letter also says that schools cannot unilaterally decide to try to fix a bullying problem by moving a student with disabilities to a more-restrictive "protective" environment, or by changing a student's special education services. That decision must be made by an IEP team and give an opportunity for parents to weigh in, the letter said.

Ari Ne'eman, the president of the Autistic Self Advocacy Network, supported that reminder. In a statement, he said that the department deserves credit "for reinforcing that when a child is being bullied, it is inappropriate to 'blame the victim' and remove them from the general education classroom. School districts have an obligation to address the source of the problem—the stigma and prejudice that drives bullying behavior."

Update: Fixing an Affordable Care Act Problem

An earlier post discussed a problem with the Affordable Care Act.  The Oregonian reports on a potential fix:

Federal officials have reversed course on a new provision of the Affordable Care Act that would have largely barred guardians from serving as paid caregivers for adult children with developmental disabilities.

Officials with the state Department of Human Services said Friday that federal officials have agreed to work with the state to develop "the right processes" to allow guardians -- often times relatives -- to continue as paid caregivers. It's unclear yet what those processes will be, said Patrice Botsford, director of developmental disabilities services for the department.

"We'll be working on it next week," she said. "We will do it as rapidly as we possibly can."

The news comes as a relief to parents such as Deana Copeland, who feared the provision could have forced her to place her 22-year-old daughter in foster care. Her daughter, Andrea Hood, suffers from cerebral palsy, spina bifida and autonomic dysreflexia, a potentially life-threatening condition, and requires around-the-clock care. The pair was featured in a story by The Oregonian earlier this week.

Screening Latino Children

A release from Oregon Health & Science University:

Clinicians have long known that early identification of an autism spectrum disorder (ASD) improves a child’s long-term health outcome as well as the family’s ability to cope with disease. But Latino children are diagnosed with ASDs less often and later — an average of 2.5 years later — than white children and have more severe symptoms at the time of diagnosis. The reasons behind these disparities have been poorly understood, and no studies have investigated pediatricians’ perspectives on this inequity — until now.

A new study published online in the journal Pediatrics reveals that multiple factors in the primary care setting may contribute to delayed autism spectrum diagnosis for Latinos, including the perception that Latino parents are less knowledgeable about ASDs than white parents.

The study’s lead investigator, Katherine E. Zuckerman, M.D., M.P.H., an assistant professor of pediatrics at Doernbecher Children’s Hospital, Oregon Health & Science University, surmised that given their regular and early contact with families, primary care pediatricians play a critical role in early ASD identification. To test her theory, Zuckerman and colleagues surveyed 297 California primary care pediatricians — California is home to the highest population of Latino children in the United Sates — and their results were surprising:

• Only 1 in 10 pediatricians surveyed was performing the recommended (American Academy of Pediatrics) developmental screenings in Spanish.
• The majority of pediatricians reported that identifying ASD risk in Spanish-speaking families was difficult.
• 3 in 4 of the pediatricians cited access, communication or cultural barriers as obstacles to early identification of ASDs.
• The most common barrier, according to the surveyed pediatricians, was a lack of access to ASD specialists.

Zuckerman and colleagues concluded that promoting language-appropriate screening, distributing culturally appropriate materials to Latino families, improving the availability of specialists, and providing physicians with support in screening and referral for Latino children could help improve early diagnosis for Latino children.

Note that most screening and diagnostic tools are proprietary, so there is a fee for using them.

Cyrstal Phend writes at MedPage Today:

Overall, 81% offered some kind of developmental screening at any routine visit for their patients. But only 30% did the general screening and 43% did autism spectrum disorder screening on the American Academy of Pediatrics-recommended schedule.

Doing both types of screening in Spanish following the guidelines was reported by only 10%.
The survey did not attempt to determine why so many providers didn't offer Spanish-language screening, but 25% of them cited limited availability of screening tools as a barrier to autism spectrum disorder diagnosis in Latino children.

"Although the Modified Checklist for Autism in Toddlers is publicly available in Spanish, most recommended developmental screening tools are not publicly available, and Spanish materials cost more," Zuckerman's group pointed out.

"Developing and promoting free or low-cost screening resources could improve early identification and reduce language-based disparities," they suggested.

A Parent's View of IEPs

At The Daily News Journal in Murfreesboro, Tennessee, Nancy De Gennaro reports:

For children with special needs, including autism, an individualized education plan meeting should be set up explains Jennifer Kates, whose son, Harper, has autism.

“That’s just the plan every special education student has. It’s an individual plan for how that child needs to be educated,” she says. Kates suggests contacting the school’s special education teacher and assistant principal to set up the IEP.

When she first approached the school system regarding Harper’s autism diagnosis, she was armed with information and lots of paperwork, including a copy of the official diagnosis.

She attended orientation for Tennessee’s Support and Training for Exceptional Parents program (tnstep.org), which “basically educates parents of children with special needs.”

“If you’ve never been through the system and don’t know how laws work, you can get eaten alive,” says Kates, an English professor at Middle Tennessee State University. “You just have to know what your rights are, what you can ask for, and it’s your job to advocate. Sometimes people feel like you’re being rude. But really, educators and administrators don’t often know what your kids need… And every single child is different.”
...
Kates urges parents to visit autismspeaks.org and download the 100-day kit, which guides parents in the early stages of diagnosis. The kit includes a section on IEPs, too

Texas School District Bans GPS Device

KTVT-TV in Dallas reports:

An Arlington family says the school district will not allow a six-year-old with autism to take a life-saving device to school. The battle began back in February. The CBS 11 I-Team got involved this week. The little girl heads back to school in one week. A national autism organization and a local lawmaker are also involved.

Coral loves to paint, play, and learn like most six-year-olds.   She also likes to wander like most children with autism.

“When Coral is outside she runs,” says her grandmother Carol Christian.

Coral rode the bus to Pope Elementary last year and her grandmother worried that she would wander from school.  So, the family bought her a GPS tracking device.

“The tracker simply tracks where Coral is at every five minutes throughout the day.”

Christian says the tracker alerts the family if Coral goes outside of a specific zone.  The remote stayed in coral’s backpack until March.

“All of a sudden we get an email at home telling us they had removed the GPS tracker from her backpack…that it was against district policy,” explained Christian.

Habilitative Services

Kaiser Health News reports:

Habilitative services are for people who can benefit from one-on-one time with a therapist to improve daily living skills. But such services can be expensive, and not all insurance plans have covered them.

The Affordable Care Act is changing that, says health economist Lisa Clemans-Cope with the Urban Institute.

"You're much more likely to find these benefits in a plan in the individual market [starting in 2014] than you would be today. Far more likely," says Clemans-Cope.

This is because "habilitative services" are included within the 10 categories of essential health benefits the ACA will require in those new plans. Still, while some categories are straightforward — such as maternity care and preventive care — the category including habilitative services leaves more room for interpretation.

For instance, insurers could choose to cover physical therapy for someone with a broken bone, but not cover long-term support services for chronic conditions, such as speech therapy for kids with developmental delays

Special Ed in California

Tom Chorneau writes at SI&A Cabinet Report on a California group organizing plans to overhaul how special education.

Led by Linda Darling-Hammond, a nationally-recognized education professor from Stanford and chair of the CTC, the group has solicited foundation seed money to hire an executive director and partnered with the San Mateo County Office of Education to provide administrative support.

Darling-Hammond, said in an interview that the crisis has been building for some time, caused, at least in part, by a decision in the late 1990s to relax requirements to deal with a teaching shortage.

“In order to deal with the shortage, the CTC reduced the training – eliminating the requirement that teachers have a basic teaching credential before they learn to teach special education,” she explained. “So many of our special education teachers are not qualified to teach regular education, nor do they have a deep grounding in teaching itself.”
...
California schools serve about 690,000 students with disabilities – about 10 percent of total enrollment and up from 612,000 only 10 years ago. Including federal, state and local contributions, the state’s special education costs totaled about $8.6 billion in 2010-11, according to the non-partisan Legislative Analyst.

According to a 2012 report from the American Institutes for Research, California had one of the lowest identification rates of students with disabilities in the nation in 2009-12 at 6.7 percent– well below the national average of 7.9 percent.

Meanwhile, the state’s students with disabilities ranked 48th in the nation based on 2011 math and reading assessments.

From the AIR study:

Wandering and Autism

AP reports:

[A]t least 14 children with autism known to have died this year after slipping away from their caregivers. All but one of them drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, 11-year-old Anthony Kuznia, was found Thursday in the Red River after a 24-hour search near his home in East Grand Forks, Minn.

...

Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents.

...
The study in Pediatrics found that half of parents with autistic children had never received advice or guidance from a professional on how to cope with wandering.

...

[Bob Lowery, executive director of the missing children division of the National Center for Missing and Exploited Children], as well as many advocates for autism-affected families, have been exploring ways of developing a national alert system tailored to deal with wandering incidents. He said the existing Amber Alert system is not an option — it's limited to cases where a child is believed to have been abducted by someone who poses a danger to them.

One option being looked at is Project Lifesaver, launched in 1998 to help search-and-rescue teams find missing people with Alzheimer's disease, dementia, autism and Down syndrome. Funding is an issue, however: For the program to function, the people at risk of wandering must wear transmitter bracelets and emergency services must have appropriate tracking equipment.

The driving force behind the recently published research on wandering was the Interactive Autism Network, a program headed by Dr. Paul Law at the Kennedy Krieger Institute in Baltimore.

In Eugene, Oregon, KVAL reports:

Another Problem with the Affordable Care Act

Previous posts have discussed implementation problems with the Affordable Care Act. The Oregonian reports on a single mom who may have to put her severely disabled daughter -- for whom she serves as paid caregiver -- into foster care.

That's because a new provision of the Affordable Care Act set to go into effect Jan. 1, 2014, would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities. Disability rights advocates and state officials are fighting the provision and say it could restrict family flexibility and choice, especially for single parents who serve as guardians and use the caregiving allowance to stay at home.

Hood's individual service plan allows only her parents or nurses to care for her, meaning that taxpayers would likely foot additional costs should she move to foster care and require 24-hour care from nurses.

The new federal provision aims to resolve a conflict of interest that arises when the guardian who helps develop an individual service plan hires herself or himself as the paid caregiver, which could lead to financial fraud. Oregon has allowed guardians to be paid caregivers for more than 10 years under various federal waivers, and a state official says she can't recall a case where that arrangement was problematic.

The new provision is part of the K Plan, a Medicaid state plan option under the Affordable Care Act. Oregon is the first state in the nation to implement the plan, which emphasizes home- and community-based services.

But the provision will likely cause hardships for the 455 Oregon families where the guardian and the caregiver are the same person. Some families might need to go through a pricey and time-consuming process to transfer guardianship.

Kaiser Settlement in California

Autism Speaks reports:

California families denied coverage by Kaiser Permanente for applied behavior analysis (ABA) and speech therapy for their children with autism between 2004 and 2012 can apply for up to $9.3 million reimbursement for their out-of-pocket expenses and debts, under a class action lawsuit settlement.

Kaiser agreed to set up the fund to settle the lawsuit, which was brought in state Superior Court on behalf of Andrew Arce of Los Angeles who was 2 years old when Kaiser denied claims for his ABA treatment. The settlement covers out-of-pocket expenses and debts incurred between April 8, 2004 and June 30, 2012 for children diagnosed with autism.

The lawsuit alleged that Kaiser improperly denied coverage for ABA and speech therapy for children with autism under the terms of its contracts and the California Mental Health Parity Act. The class action is one of several filed around the nation charging health plans with violating state mental health parity laws by denying claims on the basis of an autism diagnosis.

An explanation of the settlement is here

A copy of the claim form is here

Bad Reporting in The New York Times

A number of posts have discussed autism and the news media. At Forbes, Emily Willingham knocks down a shoddy story in The New York Times:

Perhaps you saw the headline. God knows, it was eye catching enough: “Autism’s Unexpected Link to Cancer Gene.”

That headline and the utterly confusing story that follows it both fail to emphasize two very important clarifications: First, the gene in question isn’t just a “cancer gene.” It’s a gene that regulates the cell cycle, and changes in these genes can and do have effects that aren’t confined to cancer. Calling it a “cancer” gene in this context is inflammatory, at best.

Second, and more important, the autism in question, according to all of the research involving this gene and other similar genes, is part of a syndrome of traits that includes a head circumference that is either significantly small (microcephaly) or significantly larger (macrocephaly) than typical. It comes with clinical signs other than autism, and that’s important, particularly for parents looking at their children after reading this article and thinking, “Cancer?”

She predicts that the article will have two effects:

It will conflate autism and cancer yet again in people’s minds and lead parents of autistic children to worry that now, they must also angst about a predisposition to cancer, and it will anger autistic advocates and those who care about them because of its careless comparison of autism and a fatal disease. Autistic people and their families deserve more care than this, and readers of the New York Times deserve careful, accurate science writing placed in an appropriate context.