Important New Data

A data brief from the National Center for Health Statistics offers some important new information:

The median age when school-aged children with special health care needs (CSHCN) and autism spectrum disorder (ASD) were first identified as having ASD was 5 years.[Note: other studies have reached different conclusions.]

Percent distribution of child's age when parent or guardian was first told that child had

autism spectrum disorder among children aged 6–17 years with special health care needs and

autism spectrum disorder: United States, 2011

 

School-aged CSHCN identified as having ASD at a younger age (under age 5 years) were identified most often by generalists and psychologists, while those identified later (aged 5 years and over) were identified primarily by psychologists and psychiatrists.

Percent distribution of type of doctor or health care provider who first told parent or guardian that child had autism spectrum disorder, by child's age when parent or guardian was first told, among children aged 6–17 years with special health care needs and autism spectrum disorder: United States, 2011

 

Nine out of 10 school-aged CSHCN with ASD use one or more services to meet their developmental needs. Social skills training and speech or language therapy are the most common, each used by almost three-fifths of these children.

Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who currently use selected health care services, by age: United States, 2011

More than one-half of school-aged CSHCN with ASD use psychotropic medication.

Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who currently use selected medication types: United States, 2011

Takedown of a Vaccine Article

Seth Mnookin writes:

On Tuesday, TLC posted “Why shouldn’t we vaccinate our children,” which was one of the all-time worst pieces written about vaccines. It had outright falsehoods and oodles of misleading information. It was so bad, in fact, that I briefly wondered if it might be a deliberate effort to point out the lunacy of anti-vaccine activists. (It wasn’t.) That afternoon, I posted a sentence-by-sentence breakdown of one of the piece’s six sections, titled “Vaccines May or May Not Have a Link to Autism.”

The following day, the piece was updated — and several of my criticisms were addressed, although not in a manner that made any significant difference. At that point, all of the reader comments that had been added to the piece were disappeared.

Last night, Ken Reibel of Autism News Beat emailed me last night to report that he had heard from someone in the PR department of Discovery Communications, the company that owns TLC, and that the piece was going to be taken down. 

Time reports:

The post — by writer Josh Clark of HowStuffWorks — appeared on the Learning Channel’s (TLC) website; both HowStuffWorks and TLC are owned by Discovery Communications. Riddled with mistruths and flat-out errors, the post prompted a coalition of physicians’ organizations and vaccine activists to collaborate on a sharply worded letter signed by 19 groups, including the American Academy of Pediatrics (AAP) and the American Medical Association, defending immunization as “one of the most important decisions parents make to ensure their children’s health”...

The letter was sent last Thursday to Eileen O’Neill, group president for Discovery Channel and TLC; later that day, the article was removed from the site. A representative from Discovery did not respond to requests for comment.

“Discovery took down the article tonight = good things happen when smart people band together to support science!” e-mailed Amy Pisani, executive director of Every Child by Two, a vaccine-advocacy organization that learned about the article from a group of mothers who practice attachment parenting (the subject of TIME magazine’s übercontroversial cover story earlier this month). The mothers, according to Pisani, were shunned from their online attachment-parenting group because they vaccinated their children.

Protesting Torture

A previous post included video of outright torture at the Judge Rotenberg Center in Massachusetts. The Canton Patch is carrying a press release:

Occupy JRC will hold a peaceful protest against the Judge Rotenberg Center, scheduled for Saturday, June 2 from 12pm to 4pm. Location to be announced.

The Judge Rotenberg Center is the only place in the country to use aversives, including remotely controlled, painful electric skin shocks to change behavior in children with autism, developmental delays and/or psychiatric diagnoses.

The school has survived a move from Rhode Island to Massachusetts, multiple lawsuits, and the forced resignation of its founder and former Director, Matthew Israel. Most recently, the Judge Rotenberg Center hit the airwaves on a national level when the facility was required to release previously suppressed videotapes of former student, Andre McCollins being restrained face down for over seven hours and shocked 31 times after he refused to take off his jacket.

Occupy JRC will host the protest in Canton, time and place to be announced, and plans to include a march as a part of the day’s events.

Several speakers have been scheduled including Massachusetts Senator Brian A. Joyce, Cheryl McCollins (mother of former student, Andre McCollins), Dan Fisher (National Empowerment Center), Ari Ne’eman (Autistic Self-Advocacy Network), Laurie Ahern (Disability Rights International), Kat Whitehead (Community Alliance for the Ethical Treatment of Youth), Stephen Mark Shore (Adelphi University) and more.

Anderson Cooper recently featured the Center:

 

House Passes TRICARE Amendment

A May 18 release from Rep. John Larson (D-CT):

In a huge victory for military families struggling with autism, the annual defense budget that was passed by the House of Representatives today includes an important provision authored by Congressman John B. Larson (CT-01) that will ensure that TRICARE – the military healthcare program – fully covers the treatments that military kids with autism need.

Larson’s measure, the Caring for Military Kids with Autism Act (H.R. 2288), which had 70 bipartisan cosponsors, was written in response to the appeal of a constituent – Rachel Kenyon, the wife of Sergeant Major William Kenyon of the Connecticut National Guard and mother of two – who spoke out at an event about the many struggles that military families with children with autism face with their TRICARE coverage.

“Today, the House of Representatives affirmed its commitment that just as we leave no soldier behind, we leave no military family behind either,” Larson said. “This would not have happened without the determination and strength of Rachel and the thousands of parents just like her fighting every day for their kids. With this action in the House today, we did right by Rachel and her family, as well as military families across the country by honoring their sacrifices by making sure they do not face barriers in access to care for their children that have an autism diagnosis.”

“I want to thank Representative Walter Jones, who was the lead sponsor on the Caring for Military Kids with Autism Act; Chairman McKeon and Ranking Member Smith, and all of the cosponsors of the Caring for Military Kids with Autism Act on both sides of the aisle for their efforts to make this happen,” Larson added.

Specifically, the language included in the National Defense Authorization Act of 2013 (NDAA) will ensure that the children of Army, Navy, Air Force, and Marine Corps members that have an autism spectrum disorder (ASD) diagnosis will no longer face caps in TRICARE on a behavioral health treatment, known as applied behavior analysis. It would also ensure that the children of military retirees that have an ASD diagnosis would have access to applied behavior analysis treatment. 

Science, Media, and Autism

At the IMFAR conference in Toronto, one panel discussed how scientists should communicate with the media. The Thinking Person's Guide to Autism reports on remarks by freelance Journalist Karen Weintraub:

Remember: you are a specialist, she is a generalist. Her life is not all about your science, she doesn't have the time to become a complete expert on your science. She appreciates your passion for your work but she doesn't have time to consume it all. Don't expect her to have read all of your papers and books.
...Distinctions between media types

TV News

• Hard to find experts, e.g., there are no autism TV specialists.
• Have very little time to come up to speed. Don't expect a lot of thought from TV reporters re: the conversation.
• TV reporters in particular -- "all went into journalism school because they're not good at math" -- if you throw numbers at them, they can't do anything with them. Maybe one pie chart...
• Extremely dependent on what you say. They can't fabricate your comments or fill in the gaps. They need to lift your words and put them right in the story. They especially appreciate visual and metaphoric language.
• Static shots of the lab where you work are not interesting!

Radio

• Also a lot of time pressure. NPR tends to be a bit less stressful re: turnaround, but still high stress. 
• Requires detailed descriptions -- have to create image in peoples' minds.
• They need people do be direct.
• They need pauses in the conversation so they can cut the tape/edit.

Print

• More likely to find someone who specializes in autism, at least somewhat.
• Need greater depth and detail, can lift out the parts they need from your interview.
• Not every sentence has to be quotable, but some. Reports quote personal or visual sentences -- the ones that make the story come alive.
• Need more sources, will ask you to point to other people -- it helps the reporter do her job.
• Weintraub interviews differently for USA Today than for Nature, keep this in mind.

France and Autism

In Unstrange Minds, Roy Grinker writes about the way in which psychoanalysis has warped France's approach to autism. Maria Cheng writes at AP:

Last month, a report by France's top health authority concluded there was no agreement among scientists about whether psychotherapy works for autism, and it was not included in the list of recommended treatments.

That provoked an outcry from psychiatrists. Groups including Freudian societies, the World Association of Psychoanalysis and France's Child Institute started a petition calling on the French government to recognize their clinical approach, focused on psychotherapy.

"The situation in France is sort of like the U.S. in the 1950s," said Dr. Fred Volkmar, a U.S. expert who directs the Child Study Center at Yale University. "The French have a very idiosyncratic view of autism and, for some reason, they are not convinced by the evidence."
...

In Spain, for example, autism treatment guidelines published in 2006 lumped psychotherapy together with alternative therapies like chelation, which involves the injection of chemicals into the body to remove heavy metals. Spanish officials ruled there was no evidence such alternative treatments work.

Joaquin Fuentes, a psychiatrist and scientific adviser for a Spanish autism group, said that where he works in the Basque region, autistic children go to regular schools and none are sent to psychiatric hospitals. "To be exposed to psychoanalytic treatment is a painful and unethical way of treating children with autism," he said.

Using Teachers to Screen for Autism

A release from Chidren's Specialized Hospital:

Mountainside, N.J. – In a study with national implications, researchers at Children's Specialized Hospital found that in underserved communities using teachers to screen for autism in preschools and day care centers is more effective than the current system that relies solely on parents and pediatricians to identify the disorder. The research, which could fundamentally change the way disadvantaged children are screened for autism, will be presented this week at the International Meeting for Autism Research, or IMFAR, in Toronto. Studies have long suggested that racial and economic disparities exist in the early diagnosis and treatment of autism and as a result many poor children with the disorder miss out on valuable early intervention.

Researchers at Children's Specialized Hospital, looking for innovative ways to identify these hard-to-reach children, created community-wide screening programs that used teachers as well as parents to help identify at-risk children. The programs also used culturally sensitive materials distributed in places such as health fairs and screening programs in health clinics. Employing these methods, the study found autism rates of nearly three percent in these underserved communities, significantly higher than the overall New Jersey rate of approximately two per cent.
...
The researchers found that in some communities where English is not a first language, for instance, a child who does not make eye contact might be considered deferential and respectful by a parent, even though this behavior potentially may be a sign of autism, Dr. Harris said. The researchers also found that challenging behavior in children may be recognized but not necessarily linked to autism. The second study compared how accurate parents and preschool teachers were at identifying children at risk for autism. Completed MCHAT screens were obtained by both parents and teachers for 190 children. An additional 405 children were screened by both parents and teachers using the Social Communication Questionnaire, or SCQ. “When parents answered the questions you had a much higher failure rate than you would expect,” Dr. Janvier said, adding some parents sought to provide what they perceived to be the “correct” answer.

....

Children’s Specialized Hospital Foundation supports the programs and services of the hospital. The Foundation is ranked among the top six pediatric hospital foundations in the country. To help, or find more information, visit www.childrens-specialized.org.

Pediatricians

US News reports:

Many parents of children with an autism spectrum disorder don't feel they can turn to their pediatricians for advice on treatments, a new study finds.

Likewise, many pediatricians don't think they have the knowledge -- or time -- to devote to children with autism, with some citing reimbursement policies that don't allow for payment for lengthier appointments or for managing complex cases.

The pediatricians interviewed for the study also said they felt especially uncomfortable advising parents on alternative therapies, which are commonly used by families with autistic children.

"Most parents are not going to pediatricians with questions about treatments. They looked to them for referrals to specialists or to community resources, but they really weren't going to them for guidance about what sort of treatments they should pursue," said study author Dr. Susan Levy, who directs the Regional Autism Center and the Center for Autism Research at Children's Hospital of Philadelphia.

"And the pediatricians didn't feel informed enough to make those recommendations," she added.

Although the study involves a very small sample, its findings track with firsthand experience as well as conversations with many other autism parents.  Pediatricians often miss early signs of autism: many parents get the diagnosis only after months of false reassurances ("Don't worry: boys are late talkers.")  In turn, this problem may undermine their faith in the medical and scientific establishment.

Louisiana Expands Its Mandate

In Baton Rouge, WAFB reports:

A bill that gives children with autism greater health benefits has received final passage.

The bill, by Rep. Franklin Foil, expands mandatory autism coverage from 14 years of age to 21.

"It's huge," said Foil. "Unfortunately, a lot more children have autism in this state and what this bill does is it's insurance coverage for more children and more children get the services they need at and early age and that gets results. "

There are some caveats to qualifying, but if you're covered by insurance, the bill makes the companies provide coverage to those with autism up to the age of 21.

"It's amazing, Louisiana has been so great on this issue," said Shelly Hendrix, the mother of an autistic child.

The measure also removes a cap on coverage limits.

More on Life After High School

The study by Shattuck et al. on postsecondary outcomes also casts a light on poverty and inequality.  From the study (full text and abstract are currently online for free):

Youth from households with lower incomes also were significantly more likely to be disengaged, even after controlling for measures of impairment severity. This finding highlights the value of using population-based data relative to smaller clinical samples that often lack diversity. It also builds on previous findings in another examination of youth with an ASD after high school that found those with lower socioeconomic status had poorer behavioral outcomes after high school. The association between a lack of financial resources and poorer postsecondary outcomes among youth with an ASD also mirrors previous findings that found African-American individuals and those from poorer households to be at increased risk for disengagement from therapeutic services after leaving high school.

An emerging pattern of findings across a range of outcome measures suggests poorer youth with an ASD have very different life chances after leaving high school than more affluent peers. Income inequality and poverty rates have been increasing nationwide in recent years. In 2009, 20% of US children lived below the federal poverty line. Given current estimates of ASD prevalence and the poverty rate, ∼163 000 children with an ASD were living below the poverty line in 2009. Future research needs to examine how financial resources influence developmental trajectories and what interventions are needed to help poorer youth overcome barriers to accessing services and achieving fuller participation in society.

Life After High School

NPR reports:

Times are tough for young people. Unemployment is high, and college costs are soaring.

For those who've been diagnosed with autism, the challenges of life after high school are even steeper, according to a study just published in the journal Pediatrics.

Within the first six years of getting out of high school, only a little more than one-third of young people previously diagnosed with an autism spectrum disorder, or ASD, had gone to college, and only a slim majority — 55 percent — had held paying jobs.

The first two years after high school are particularly hard, the researchers found, with less than half of the young people with an ASD having had any work.

The researchers compared the experience of the young people with autism to those with mental retardation, learning disabilities and impaired language or speech. Those with autism fared worse than the others when it came to jobs, the researchers found.

On the college front, those with autism were more likely than those with mental retardation to have attended some college but less like to have done so than those in the other two comparison groups.

An interview with Washington University's Paul Shattuck, lead author of the study:

Autism and Schools: Good News and Bad

The Houston Chronicle reports on a Houston school for kids with disabilities:

A generation or more of mainstreaming students with disabilities has increased public acceptance, but employers have been slower to adapt. Options for community housing are still limited, as well. Monarch is trying to change that, one student at a time.

The school’s mission has broadened over the years.

It now serves students from prekindergarten through high school and offers a post-graduate program with internships, help finding jobs and, for some students, the transition to college. It has a small housing program, a cluster of homes near the campus where students ranging from their teens to early 30s live with a house parent.

An apartment program for more independent living could start next year.

Monarch serves students with attention deficit disorder, Tourette syndrome, traumatic brain injury, and mood, anxiety and seizure disorders. The number with autism spectrum disorders has risen dramatically over the past 15 years and now accounts for almost two-thirds of the school’s enrollment, executive director Marty Webb said.

In Florida, The Orlando Sentinel reports:

Parents of autistic Lake students are upset about a plan to cease out-of-county busing for their children to attend a specialized Orlando charter school.

The school district is hoping to save $400,000 of transportation expenses it pays to bus 32 autistic students to Princeton House Charter School in Orlando. The district began footing the bill for busing about 10 years ago when officials said the district could not provide the autistic students with proper services.

Now, district officials are saying the students can get a proper education within Lake schools and want to cut the out-of-county busing during a tight budget year. The School Board still needs to figure out how to come up with about $1.3 million to meet next year's budget needs.

In Georgia, WSB in Atlanta reports:

The family of an autistic high school student is outraged the state Board of Education won't let him graduate next week.

Sinclaire Coffer, 17, is a senior at North Springs Charter High School in Sandy Springs.
"He's a model student," his sister Capri told Channel 2's Mike Petchenik. "Not being able to graduate is an impediment to his dream.”

Coffer showed Petchenik paperwork that shows school officials are well aware of his difficulties with math. His transcripts show he excels in other subjects, including English and history.

"We’ve gotten a private tutor," his mother said. "He’s taken classes that are offered by the school in summer and throughout the school year.”

Still, Coffer has failed the state's required math graduation exam five times. 

I’ve been trying really hard," Coffer told Petchenik. "I passed all of the art ones on the first try, but it’s just math that gets me.”

Because of his diagnosis, the Coffers requested a special waiver from the Board of Education that would have allowed him to graduate. On Thursday, the board voted to deny his request.

"I’ve been trying really hard," Coffer told Petchenik. "I passed all of the art ones on the first try, but it’s just math that gets me.”

The Diagnostic System

In The New York Times, Dr. Allen Frances criticizes psychiatry's monopoly over diagnosis:

Until now, the American Psychiatric Association seemed the entity best equipped to monitor the diagnostic system. Unfortunately, this is no longer true. D.S.M.-5 promises to be a disaster — even after the changes approved this week, it will introduce many new and unproven diagnoses that will medicalize normality and result in a glut of unnecessary and harmful drug prescription. The association has been largely deaf to the widespread criticism of D.S.M.-5, stubbornly refusing to subject the proposals to independent scientific review.

Many critics assume unfairly that D.S.M.-5 is shilling for drug companies. This is not true. The mistakes are rather the result of an intellectual conflict of interest; experts always overvalue their pet area and want to expand its purview, until the point that everyday problems come to be mislabeled as mental disorders. Arrogance, secretiveness, passive governance and administrative disorganization have also played a role.

New diagnoses in psychiatry can be far more dangerous than new drugs. We need some equivalent of the Food and Drug Administration to mind the store and control diagnostic exuberance. No existing organization is ready to replace the American Psychiatric Association. The most obvious candidate, the National Institute of Mental Health, is too research-oriented and insensitive to the vicissitudes of clinical practice. A new structure will be needed, probably best placed under the auspices of the Department of Health and Human Services, the Institute of Medicine or the World Health Organization.

All mental-health disciplines need representation — not just psychiatrists but also psychologists, counselors, social workers and nurses. The broader consequences of changes should be vetted by epidemiologists, health economists and public-policy and forensic experts. Primary care doctors prescribe the majority of psychotropic medication, often carelessly, and need to contribute to the diagnostic system if they are to use it correctly. Consumers should play an important role in the review process, and field testing should occur in real life settings, not just academic centers.

Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will always be an essential part of the mix but should no longer be permitted to call all the shots.