Angle and Autism: Parents Speak

From KTNV:

KRNV reports:

Parents of children with autism are fighting mad at comments made by Senate candidate Sharron Angle. The parents met at a round table discussion called by Assem. David Bobzien, (D) District 24, Wednesday morning in Reno.

Bobzien was among numerous state lawmakers who sponsored Assembly Bill 162 at last year's session, which provides for insurance coverage for expensive-- but effective-- autism treatments.

...

"I am outraged by Sharron Angle and the comments she has made," said Herah Osborne, whose 7-year-old twins have been diagnosed with autism. "[And] the fact that she didn't educate herself about Assembly Bill 162."

Several parents who attended the meeting took a copy of the 2008 report on autism, compiled by the Autism Coalition of Nevada, to Angle's Reno office. By Wednesday afternoon, Angle's office had released a statement that said in part:

"Sharron Angle believes that Americans deserve the best medical coverage and treatment, and the real issue continues to be about costly unfunded government mandates forced upon Americans by career politicians like Senator Harry Reid through unwanted legislation like Obamacare which will reduce the level of needed care while driving up the cost of health insurance."

Angle Under Fire on Autism

Greg Sargent writes at The Washington Post:

* I wrote earlier that Sharron Angle wasn't mocking autism in that vid that's making the rounds, but Nevada writer Steve Sebelius makes a strong case that she was, in fact, expressing "skepticism that autism is a legitimate disorder."

Sebelius argues the vid reveals "Angle's utter selfishness, and her encouraging that selfishness in others. She doesn't have autism, or autistic kids, so why should she pay for them? And why should you? She's not going to have any more babies, so why should she be forced to pay for other people's? And why should you?"

* And: Eric Kleefeld points out that "it is very clear that Angle was opposing mandated health insurance coverage for various conditions, including autism." Meaning that Angle's plan wouldn't require insurance companies to cover it.

* Angle's response: Her camp puts out a statement that government allows people to "falsely label other symptoms as autism."

Sargent also writes on an attack from HHS Secretary Sebelius:

It isn't every day that a White House cabinet secretary thrusts herself this forcefully into a Senate race, but Health and Human Services secretary Kathleen Sebelius today took a very hard shot at Sharron Angle over that widely-circulated video of Angle belittling mandated coverage for autism treatment.

"It is my understanding that Sharron Angle believes that there is a hoax, under the guise of autism, where you would include requests for treatments that may not even be required," said Sebelius, who was in Nevada promoting health care reform with Harry Reid.

Sebelius pounded Angle's comments as "insulting" to parents and kids, adding: "I don't know if there is anyplace in the country where the differences in the candidates are more stark than here."

The Reno Gazette-Journal reports:

Russ Steele, a parent whose 5-year-old son suffers from autism, said Angle "owes an apology" to parents and their children with autism.

"When she mocked the very existence of autism, she crossed the line," Steele said.

"Sharron Angle owes (my son) Brandon and every other autistic child in Nevada an apology, not only for trying to undermine their insurance coverage but for mocking the very existence of autism," Steele said.

Whooping Cough: WaPo Notices

The Washington Post takes note of the whooping cough outbreak in California:

In California it is legal and quite easy to refuse vaccination, and the discredited theory that vaccines cause autism has created clusters of unvaccinated children. In affluent Marin County north of San Francisco, for example, about 13 percent of parents refused vaccination for their kindergartners in 2009, according to the state's Department of Public Health. Marin has one of the highest rates of infection this year.

Pertussis is more infectious than smallpox, polio or influenza, and it spreads quickly through the unprotected. It often escalates from what seems to be a regular cold into a severe respiratory infection that causes some patients to gasp for air with a distinctive high-pitched whooping sound.

But while shunning vaccine is probably playing a role in the epidemic, particularly in some areas of the state, it isn't the only cause, according to Kathleen Harriman, California's chief epidemiologist for vaccine-preventable diseases. Better detection explains some of the increased reports of pertussis. But Harriman and other experts worry that the epidemic could also point to serious problems with the current vaccines.

Life with Autism

Chicago's WLS reports on one family's struggle:



The Hartford Courant reports on adults on the spectrum:

Things have improved for younger people diagnosed with an autism spectrum disorder.

Today, federal law requires that children with disabilities receive special education services until they graduate with a diploma or turn 21, said George Dowaliby, a manager in the Bureau of Special Education in the state Department of Education. As part of those services, school districts must also identify and provide transitional services, he said.

"This has to begin by the youngster's 16th birthday and can and often does begin earlier," Dowaliby said. This is "to help prepare the student for post-public school education, employment, post secondary goals," he said.

The gap continues, however, Dowaliby said, noting that once a child who has autism but does not have mental retardation graduates or is older than 21, there is a dropoff of available services.

What the state does offer is the program that Patrick Walsh is part of. Serving about 50 people from the New Haven and Hartford areas, the program provides life skills, job coaching, job development and mentoring.

It does not offer supportive housing for adults with autism, a spokeswoman from the department of developomental services said. And, perhaps more unfortunately, there are no plans to expand it beyond its 50 or so clients.

Those not accepted into the Department of Developmental Services' program can apply for employment help through the Bureau of Rehabilitative Services, an arm of the Department of Social Services. "We look at their skills and abilities, their interests and the challenges that they might face," said Torrey Morse.

Going to work is challenging for people on the autism spectrum, she said. "It's a growing population in Connecticut and across the nation, and as an agency we are trying to learn what we can about this population."

Angle Reactions

KVVU reports:

The national Autistic Self Advocacy Network on Friday called for Nevada GOP Senate candidate Sharron Angle to apologize for a statement she made regarding health care and autism treatment.

Video of Angle speaking at a 2009 Tea Party rally surfaced this week. In it the former state legislator slams Democratic health care policies.

“You’re paying for things that you don’t even need, they just passed the latest one is every, everything they want to throw at us now is covered under autism, so that's a mandate that you have to pay for,” she said, making air quotes around the word “autism.”

The Nevada Democratic Party posted a video of the speech on YouTube.

“We’re concerned by the Angle campaign’s claim that individuals and families 'falsely label other symptoms as autism' in order to takte advantage of insurance mandates,” the ASAN said in a statement. “Lack of insurance coverage for habilitative services, such as occupational therapy and speech pathology services, is a barrier to the civil rights of autistic Americans both young and old.”

Autism Angle Update

KRNV follows up on Sharron Angle's comments on autism (see yesterday's post):

KRNV News 4 asked Sharron Angle's campaign for comment yesterday, and her spokesperson Jerry Stacy sent us the following in an email just before noon today:

"Sharron believes that anyone affected with autism deserves the best medical coverage and treatment, and she speaks out against these expensive government mandates which falsely label other symptoms as autism because it creates this huge cottage industry that drives up health insurance cost while diluting the needed coverage for those patients affected by autism...and nobody is buying Senator Reid's latest despicable attempt of trying to distract voters from his failed record."

Vice-Chair for the Commission on Autism in Nevada Ralph Toddre released this statement today:

"What Ms. Angle claims about AB 162 is false. The bill is very specific that the coverage is for autism spectrum disorders. It does not create a "cottage industry." It covers medically necessary treatment and evidence-based therapy, as well as the screening and diagnosis. It is autism specific. Legislators and advocates made sure of that. Read the bill! You don't condemn a bill that provides for medical coverage and treatment because you think it will become diluted! One in 110 children in this country is affected by autism. That is more than juvenile diabetes, HIV, and childhood cancers combined. All of those are covered by insurance. Why should autism be discriminated against by insurance companies?"

Senate Candidate Antagonizes Autism Community

KRNV in Reno reports:

Democrats are emphasizing Nevada GOP Senate candidate Sharron Angle's opposition to mandating insurance coverage for autism and pregnancy and are using a video of her at a 2009 tea party rally to hammer home their point.

In the video, released by the Nevada Democratic Party, Angle slams a recently passed Nevada mandate for insurance carriers to cover treatment for autism.

"Take off the mandates for coverage in the state of Nevada and all over the United States," Angle said. "But here you know what I'm talking about. You're paying for things you don't even need. They just passed the latest one, is everything that they want to throw at us now is covered under autism," she said, using her fingers to make quotes in the air while she said the word ‘autism.' "So that's a mandate that you have to pay for. How about maternity leave, I'm not going to have any more babies, but I sure get to pay for it on my insurance. So those are the things we want to get rid of."

North Dakota Mandate Legislation

The Grand Forks Herald reports that a proposed insurance mandate in North Dakota has two features in common with proposals elsewhere: it is named for a person with autism, and it has support from legislators with firsthand experience:

A Dickinson, N.D., father wants kids like his 8-year-old son to be able to get the help they need.

Nick Gates is pushing for “Noah’s Law,” which would require health insurance coverage for autism spectrum disorders. The bill draft applies to those under the Public Employees Retirement System.

Gates, who works for the Dickinson Police Department, testified Tuesday before the legislative Employee Benefits Programs Committee..

Sen. Carolyn Nelson, D-Fargo, who has a grandson with autism, said she and Sen. Rich Wardner, R-Dickinson, are supporting the bipartisan legislation.

The bill draft would require insurance companies, nonprofit health service corporations or health maintenance organizations to provide coverage for the diagnosis and treatment of autism spectrum disorders.

Coverage would be limited to treatment prescribed by a physician in accordance with a treatment plan.

The bill also states coverage could not be terminated or refused solely because the individual is diagnosed with an autism spectrum disorder or has received treatment.

Peter Roverud of Minneapolis-based Deloitte Consulting told lawmakers an estimated 85 Public Employees Retirement System members would receive treatment for autism spectrum disorder at a cost to the plan of $25,000 to $35,000.

This would equate to a per member per month cost of $3.08 to $4.31, or about $2.1 million to $3 million annually, he said.

Autism in Shanghai

CNN reports:

Qing Cong Quan Autism Center (QCQ) is one of seven Shanghai schools dedicated to educating autistic children. There are 10,000 autistic children in Shanghai, according to the Autism Children Foundation. Despite the high numbers, few public Shanghai schools in the city accept children with autism.

Like many educators, Chen Jie knew little about autism. In fact, when QCQ opened its doors in 2004, it was a regular preschool. That year, a father approached Chen Jie asking if she would enroll his autistic son. At the time Shanghai had no autism schools, and no one else would admit the child. Chen Jie agreed, and word spread as more and more parents came with their autistic children. It seemed that Chen Jie’s calling had found her. Within a few months, QCQ officially became a Chinese NGO and school for autistic children.

...

Since the Chinese government recognized the disorder in 2006, knowledge about autism has grown, but public awareness continues to be spotty. Chen Jie and her staff focus on educating not only children, but also parents across China and the local community. “We grab every opportunity to tell people what autism is and invite them to come see,” says Chen Jie.

Families of autistic children do still face social stigmas. Often one parent must quit their job to stay home with their child, adding financial pressures. The QCQ staff helps parents deal with the huge learning curve that come from having a special needs child and teaches parents how to help their kids develop.

Chen Jie explains, “We never say the kids lack care, but that they need training.” That is something often lacking outside of QCQ.

See previous posts on autism in China here and here.

HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act

On Wednesday, the US House votes on the HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act, by Representatives Mike Doyle (D-PA) and Chris Smith (R-NJ). Doyle and Smith are c0-chairs of the first-ever Congressional Membership Organization dedicated to autism advocacy on Capitol Hill—The Coalition for Autism Research and Education (CARE). When the House Energy & Commerce Committee approved the measure in July, Representative Doyle issued a release with background information:

Congressman Doyle and Congressman Chris Smith (NJ-4) introduced the TRAIN Act on July 15. This national autism training initiative would establish grants to provide individuals with interdisciplinary training, continuing education, technical assistance, and information in order to improve services to children and adults with autism and their families, as well as to address the existing unmet needs related to autism.

The TRAIN Act is supported by groups like Autism Speaks, the Autism Society of America, self advocates from the Autism Self-Advocacy Network, and the Association of University Centers on Disabilities (AUCD) and many other organizations.

The manager’s amendment made several agreed-upon technical changes to the text of H.R. 5756 as introduced, reflecting technical assistance from the Administration for Children and Families at the Department of Health and Human Services. These changes would make certain that University Centers of Excellence on Developmental Disabilities, also known as UCEDs, seeking grant funds under this section demonstrate that families, in addition to individuals on the autism spectrum, will participate in the planning and design of authorized activities – and that UCEDs seeking capacity-building grants to collaborate with minority-serving institutions provide services and conduct research and education. The amendment and the amended bill were both approved by voice vote.

The bill is on the suspension calendar, generally reserved for non-controversial items likely to pass by more than two-thirds.

Insurance in West Virginia

WTRF reports on a hearing last week in West Virginia:

Insurers took their usual position.

Moving for Insurance

CNN reports on a family that moved from West Virginia to Florida for better autism coverage:

Faced with huge financial pressures and not wanting to miss their treatment window, Radcliff and Finn did what many autism parents do: They moved to a state where autism anti-discrimination legislation had been passed. Finn had a job opportunity in Florida, and they jumped on it.

Although the details of the legislation vary by state, all "autism anti-discrimination legislation," as it is called by advocates, compels insurance companies to cover ABA treatment for children with autism.

Twenty-three states have so far passed such legislation, and a controversial version of the bill is due on New York Gov. David Paterson's desk later this month, according to his office.

See state-by-state analysis of anti-discrimination legislation

Jennifer Saunders of the National Conference of State Legislatures says lawmakers have started to sit up and take notice.

"We've definitely seen an increase in the number of bills that have been introduced in the last few years related to autism [insurance mandates], and so I think it's been a growing issue for states -- or at least they've become more aware of it," Saunders says.

In 2010, Iowa, Kansas, Kentucky, Maine, Massachusetts, Missouri, New Hampshire and Vermont enacted legislation requiring insurance coverage for autism, according to NCSL.

Susannah Poe, an associate professor at West Virginia University's School of Medicine and an expert on autism who advises the West Virginia legislature, says a bill is even gaining momentum in her state.

"This is our fourth year working with the state legislature toward this insurance, and this is the first year I feel hopeful that we will see it through. The legislators on the joint judiciary subcommittee are very well-versed about the need and have welcomed our efforts to provide them with critical information," says Poe, who spoke to the committee on Tuesday.

Inland Regional Center

An earlier post described an audit of California's Regional Centers.

The Inland Valley Daily Bulletin (Ontario, CA) reports on a hearing this week at the Inland Regional Center:

Several vendors speaking at the public hearing spoke about retaliation for questioning decisions or raising concerns about operations.

Laura M. Wiles, an advocate for special education and adult services in Wildomar, said "I am continually frustrated by the lack of programs, especially for adults with autism."

The parent of an 18-year-old son with severe autism, Wiles said IRC was unable to place her son in an appropriate facility in Riverside County. She found one for him in San Diego County.

"They (IRC) have dropped the ball on adult programs. The caseworkers know this is something they should advocate. They are overwhelmed."

"The organization is more about quantity than quality," said Beth Burt, president of the Autism Society of America's Inland Empire Chapter in Corona.

After the meeting, Carol Fitzgibbons, IRC executive director since May, said, "It is the responsibility of myself, our staff and our board to listen and take the information and figure out what we need to do next and try to resolve some of these issues."

"I always feel that an audit is a learning process ... this is part of the learning process."

"At the end of the day consumers are being served and we plan to move forward in positive ways," she said.

Assemblyman Hector de la Torre, D-South Gate, who initially called for the audit, said in an interview Tuesday, "clearly there is not enough oversight of the regional centers which manage nearly $4 billion in taxpayer funds."

On Facebook, Kristie Renee' Sepulveda-Burchit follows up:

An article I read yesterday morning was titled "Angry crowd criticizes Inland Regional Center." Now yes there were people who were notably angry and many were understandably vendors. One parent did verbalize he was angry. It was clear from the other things he said that this parent was more frightened, anxious, and that his trust had been violated by IRC. I don't think those are things most men verbalize about and certainly not at a public meeting. This parent I recognized from going to other board meetings throughout the past year and a half and immediately wondered where his wife was as she normally speaks. He pointed that out saying normally his wife got up and did public comment about the recurrent issue they have of the regional center curbing the independence of their son with a developmental disability. However, as this dad announced, his wife had since passed away. He later talked about how he is pushing 60 and won't be around forever and he thought he could trust the regional center to be there for his son after he passes too and now he's just not so sure. Perhaps he is angry. Or perhaps he's really scared. I know I would be.

Due to the budget cuts from last year in 2009 our regional center decided to cut for all consumers' a service called social recreation. This service gives the IRC clients the ability to go out in the community and socialize. They didn't train the case workers or staff on exemptions to the legislative rules just sent out notices to all consumers that social recreation would be cut. One parent got up to talk about the effect of this on her son and she verbalized that he no longer is going out in the community but staying at home. This mom feared that her son was headed in the direction of having to be institutionalized.

Another parent voiced her concern for her adult son who has been ousted from several day programs. Though she recently found a pilot program that is appropriate for him, she believes IRC does not have ample selection and is not prepared for the tsunami of children with autism that will be adults. This parent has had to become a resource to other parents who have children graduating from high school who have nowhere to turn for their kids.

Vaccinations

Despite possible problems with whooping cough (see earlier post), the overall vaccination picture is largely unchanged. Katherine Hobson reports for the Wall Street Journal:

For the most part, toddlers are getting their recommended vaccinations, the CDC reported today.

A survey finds that for most routine vaccines — those against polio, measles/mumps/rubella, hepatitis B and chicken pox — coverage rates are close to or above the public health goal of 90% among children aged 19-35 months. And fewer than 1% of kids in that age group have received no vaccines at all.

(Here’s the vaccination schedule for kids up to age 6.)

As is customary, coverage rates for more recently recommended vaccines are lower. Coverage for the hepatitis B birth dose rose to 61% from 55% in the previous survey of kids in this age range, while coverage of the hepatitis A vaccine rose to 47% from 40% and coverage for the vaccine protecting against the pneumococcus bacterium held steady at 80%. Coverage for the rotavirus vaccine was 44%.

Data-lovers should dive directly into the CDC’s report; it has coverage rates broken out by state, racial or ethnic group and poverty status.

The First Diagnosis

In The Atlantic, John Donvan and Caren Zucker find the first person who ever received the formal diagnosis of autism:

The authors use the surprisingly happy story of Donald Triplett to make some observations about adults with autism, most of whom do not fare as well:

[Dr. Peter] Gerhardt, who is a former president of the Virginia-based Organization for Autism Research and is now developing a program focused on adolescence to adulthood at the respected McCarton School in New York, is considered among the top experts in the country working with adults who have autism. But he jokes that this is chiefly because he’s never faced much competition. “I have an entire career,” he says, “based on people not wanting my job.” Child development is the hot area in autism research; working with adults, Gerhardt says, “is not a career move.” Adults present greater challenges: they are big enough to do real violence in the event of a tantrum; they are fully capable of sexual desires, and all that those imply; and they’re bored by many of the activities that can distract and entertain children with autism. “People want to treat these adults like little kids in big bodies,” Gerhardt says. “They can’t. They’re adults.” As such, he argues, they’re equipped, as much as any of us, with the recognizable adult aspiration of wanting to “experience life.”

...

This leads to the question of where they will live. As it is, 85 percent of adults with autism still live with parents, siblings, or other relatives. But what happens when that is no longer an option? Large-scale warehousing is gone—and good riddance, most say. An obvious alternative is residential arrangements offering multiple spaces to people with autism, who can share support services under one roof in a setting that really is a home. At present, however, given both start-up costs and resistance from neighbors, the number of spaces in such homes is limited, and landing a spot can be extremely difficult: nationally, more than 88,000 adults are already on waiting lists.

All of which leads to an unsettling answer for those parents asking what happens, after they die, to their children with autism. We don’t really know.

Latest on the Vaccine Controversy

Sanjay Gupta at CNN reports:

Exposing a fetus or young infant to vaccines with the mercury-based preservative called thimerosal does not increase the risk for autism, according to a study published Monday in the journal Pediatrics.

"This study adds to the evidence that thimerosal-containing vaccines do not increase a child's risk of developing autism," lead study author, Dr. Frank DeStefano of the Centers for Disease Control and Prevention (CDC) tells CNN.

Researchers studied the medical records of 256 children diagnosed with autism and 752 typically developed children born between January 1994 and December 1999. The children were between 6 and 13 years old when the medical data was reviewed – 85 percent of them were boys. The research concluded that there was no evidence that children exposed to the mercury in the vaccines were at risk for getting autism.

Sheryl Attkisson reports at CBS:

The debate over any links between vaccines and autism - a behavior problem triggered by brain damage - couldn't be more contentious. The great majority of medical opinion holds that vaccines don't cause autism. However, many of the same experts don't dispute that vaccines can, in rare instances, cause brain damage.

Our examination of federal vaccine court decisions over the years reflects this. Children who end up with autistic symptoms or autism have won vaccine injury claims over the years-as long as they highlighted general, widely-accepted brain damage; not autism specifically. But when autism or autistic symptoms are alleged as the primary brain damage, the cases are lost.

That doesn't make sense to families who see autism as a specific form of encephalopathy. But it makes perfect sense to the University of Pennsylvania's Dr. Brian Strom, who has served on Institute of Medicine panels advising the government on vaccine safety. He says the prevailing medical opinion is that vaccines are scientifically linked to encephalopathy, but not scientifically linked to autism.

"The fact that a person suffers autism and encephalopathy does not mean that the vaccine caused both of them," says Dr. Strom. "Even if it caused the encephalopathy, that may or may not have been the cause of the autism--those are two different questions."

Floortime Final Approval

Earlier posts mentioned a dispute over funding of Floortime in Los Angeles County. Alan Zarembo writes in The Los Angeles Times:

A judge gave final approval Monday to a settlement agreement allowing families of autistic children in eastern Los Angeles County to receive a state-funded therapy for the disorder.

Last year, the Eastern Los Angeles County Regional Center, a nonprofit agency that coordinates state-funded services for the disabled, informed more than 100 families that it was discontinuing the treatment -- known as the DIR model -- as a result of state budget cuts.

Best known as Floortime, the treatment relies on a therapist to follow a child’s lead during play activities to develop communication and social skills.

Poling Update

An earlier post quoted a CBS report on the Poling case. Fox also hyped the story:

The Point of Law blog comments:

With thanks to correspondent Liz Ditz, it now appears to me that CBS News got it wrong when it implied that the federal government had conceded a causal link between vaccines and autism in the suit for which it announced a settlement earlier today (see my POL posting below).

The federal payment does not acknowledge a vaccine-autism link. The payment was made for a mitochondrial disorder and encephalopathy which fall under a category of so-called "Table" injuries for which parents do not need to show proof that the vaccine aggravated the condition as long as it appeared within a certain amount of time after vaccination.

"It's a complicated story...the government hasn't explained to the press or the public exactly what their thinking was in this case," says Paul Offit, a pediatrician and infectious disease researcher at the Children's Hospital of Philadelphia. The symptoms which a doctor later used to diagnose her with autism "were part of a global encephalopathy," he wrote in an opinion piece in the New England Journal of Medicine two years ago (15 May 2008, NEJM) and could have been aggravated by the vaccine or by other naturally-occurring childhood fevers. This child, in other words, did not suffer from autism but from a neurodegenerative disorder with "features of autism."

The Limits of Science

At Intelligent Life, Anthony Gottlieb explains that while science is often wrong, it is the only game in town:

If a claim is ambitious, people should indeed tread warily around it, even if it comes from scientists; it does not follow that they should be sceptical of the scientific method itself. But there is an awkward public-relations challenge for any champion of hard-nosed science. When scientists confront the deniers of evolution, or the devotees of homeopathic medicine, or people who believe that childhood vaccinations cause autism—all of whom are as demonstrably mistaken as anyone can be—they understandably fight shy of revealing just how riddled with error and misleading information the everyday business of science actually is. When you paint yourself as a defender of the truth, it helps to keep quiet about how often you are wrong.

....

In a recent book, “Wrong: Why Experts Keep Failing Us—And How to Know When Not to Trust Them”, David Freedman, an American business and science journalist, does a sobering job of reviewing dozens of studies of ignorance, bias, error and outright fraud in recent academic science. He notes that discredited research is regularly cited in support of other research, even after it has been discredited. Trials of the safety and efficacy of drugs, which are often paid for by pharmaceutical companies, seem to be especially liable to errors of various sorts. That helps to explain why medicines that can do unexpected harm—such as thalidomide, the sedative which was withdrawn in 1961 after causing deformities in babies, and Vioxx, a painkiller that had been used by 84m people before it was pulled in 2004—make it to the market.

It is perhaps the biases of science reporting in the popular press that produce the most misinformation, especially in medicine. The faintest whiff of a breakthrough treatment for a common disease is news, yet the fact that yesterday’s breakthrough didn’t pan out—which ought to be equally interesting to a seeker after truth – rarely is.

In May, Freedman wrote of the Wakefield episode:

Yes, in this case the system worked, because the findings were so inflammatory in terms of the politics of the large autism community, and because they so blatantly contradicted what scientists were already sure they knew about the subject. But it's a real exception to how the system fares, not a general validation. And that's the insight we really ought to take away from this sorry episode.

Service Dogs

The politics of autism involves a broad and diverse array of issues, many of which one might not expect. One such issue is that of service animals. A previous post touched on the issue. WAFF reports on a case in Alabama:

A Shoals school district has once again changed its mind on providing a handler for a service dog for an autistic student. The family of the student is now taking legal action.

The Tuscumbia School Board voted in August, to allow Hudson Kendrick, to bring his service dog to Deshler Middle School. Hudson suffers from autism and the dog helps him with even the simplest tasks. A month into school and the Kendrick family finds themselves in the middle of a fight again.

Joel and Lisa Kendrick say after getting the 'ok' for their service dog "Lorelei" to assist their son in the classroom, the school is now flip flopping on the agreement. They claim the district told them the animal is not a service dog and the only way she'll be allowed on campus is if one of them stays in the classroom.

"It seems to me like they should make some special considerations for this kid," said a fellow parent. "This kid needs help."

"It's not a matter of clear cut law," said Florence attorney Vickie Willard. Willard is a former special education coordinator in Alabama. "Until there's a ruling by an administrative law judge, there may not be a final answer. This may be a case that has to be litigated at some point, not only for this child, but for other children with disabilities as well," said Willard.

The Kendrick's have hired an attorney out of Birmingham to help. They say other parents and students have been fully supportive of Lorelei and that they only have the best intentions for their child at heart.

WAAY reports on another case in the same state:

When you walk through the doors at Somerville Road Elementary School in Decatur, you may see a cardboard cutout of Puah an autism service dog.

For the last three years, Puah has been attending school with 11-year old Brayden Ellis.

"They were very supportive and i'm very grateful for that because they had a choice to make, they could either support the child or they could fight this and they chose Brayden," said Brayden's mom, Wendy Ellis. "It's a tool to work with just like a child has a wheel chair or a child has glasses. Brayden has her dog, and that helps her get through the day. Just like someone needs their glasses to read, Brayden needs her dog to calm her."

Ellis said children with autism have already given up so much and don't get to do many of the things other kids their age enjoy doing.

"For example, Brayden has never gone to a slumber party and the other day she called me in and said she wanted to have a slumber party. So I went in, and she had her toys and sleeping bags and she had a sleeping bag laid out for Puah because Puah is her friend," said Ellis.

The Ellis' have never been told they couldn't bring Puah anywhere. The dog has been in doctor's offices, restaurants, even Disney World with the family!

See also:

• Autism Service Dogs of America
• Neurodiversity links on service animals
• Easter seals links on service animals

Criticisms of Autism Speaks

The Association for Science in Autism Treatment and the Autism Science Foundation are criticizing Autism Speaks:

(September 10, 2010—New York, NY) —The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it has signed on to an open letter written by the Association for Science in Autism Treatment (ASAT) to Autism Speaks, calling for Autism Speaks to revise statements posted on its website regarding autism and vaccines to bring them more in line with current science.

On its website, Autism Speaks writes, “Several epidemiological studies have explored whether either the MMR vaccine or thimerosal, a preservative previously used in vaccines, are linked to autism, and these studies have not supported a link. But these studies were not designed to identify effects in a small population of potentially vulnerable children due to rare genetic and/or medical conditions.”

The letter from ASAT asks Autism Speaks to correct its website, specifically where Autism Speaks suggests there is a credible scientific rationale for a “vulnerable population” hypothesis, the implication being that there is a group of children for whom vaccines may cause autism. No data yet exist that support a “vulnerable population” hypothesis; it is entirely theoretical. Moreover, because no criteria are offered by which a parent can determine whether his/her child is in this supposed “vulnerable population”, some parents may assume his/her child is in the risk group, and may then choose to withhold potentially life-saving vaccinations.

At The Age of Autism, Katie Wright criticizes an Autism Speaks adviser for endorsing Paul Offit's book:

So imagine my surprise when I read a glowing endorsement from Dr. Daniel Geschwind, well know genetics researcher who serves on the NIMH Scientific Advisory Panel, is a member of the six-person Autism Speaks scientific review panel and won the AS’ Scientific Service Award in 2008. Dr. Geschwind describes Paul Offit as a “brave and articulate champion of the truth” in Offit’s book advertisements. If Offit is the “champion of truth” does that mean that children who experienced severe adverse vaccine reactions and subsequent regressions are fakers or hypochondriacs? Do their parents have Munchansens by proxy?

Poling Case Award

CBS reports:

The first court award in a vaccine-autism claim is a big one. CBS News has learned the family of Hannah Poling will receive more than $1.5 million dollars for her life care; lost earnings; and pain and suffering.

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Time Magazine summed up the relevance of the Poling case in 2008: ...(T)here's no denying that the court's decision to award damages to the Poling family puts a chink -- a question mark -- in what had been an unqualified defense of vaccine safety with regard to autism. If Hannah Poling had an underlying condition that made her vulnerable to being harmed by vaccines, it stands to reason that other children might also have such vulnerabilities."

Then-director of the Centers for Disease Control Julie Gerberding (who is now President of Merck Vaccines) stated: "The government has made absolutely no statement indicating that vaccines are a cause of autism. This does not represent anything other than a very specific situation and a very sad situation as far as the family of the affected child."

Read the newly-released decision on Hannah Poling's compensation.

Learning Disabled Enrollment

Education Week reports:

After decades of what seemed to be an inexorable upward path, the number of students classified as learning-disabled declined from year to year over much of the past decade­—a change in direction that is spurring debates among experts about the reasons why.

The percentage of 3- to 21-year-old students nationwide classified as having a “specific learning disability” dropped steadily from 6.1 percent in the 2000-01 school year to 5.2 percent in 2007-08, according to the most recent data available, which comes from the U.S Department of Education’s 2009 Digest of Education Statistics. In numbers, that’s a drop from about 2.9 million students to 2.6 million students.

In this light, the data on autism are all the more remarkable. While other categories of "specific learning disability" are going down, autism is going up. See numbers in thousands:

• 1995-96 ..... 28
• 1997-98 ..... 42
• 1998-99 ..... 53
• 1999-00 .... 65
• 2000-01 .... 94
• 2001-02 ... 114
• 2002-03 ... 137
• 2003-04 ... 163
• 2004-05 ... 191
• 2005-06 ... 223
• 2006-07 ... 258
• 2007-08 ... 296

Here is another way to look at it: in 1995-96, kids with autism accounted for 0.5 percent of children served. In 2007-2008, that figure had increased ninefold, to 4.5 percent.

An End to the Vaccine Debate?

CNN.com is carrying a story from Parenting:

On playgrounds and at playdates, it's hard to have a conversation about childhood immunizations without the word autism popping up. In fact, a recent study published in the journal Pediatrics showed that one in four parents is concerned that vaccines can cause autism.

It's no wonder when the Internet and television airwaves are full of personal stories that raise a question about the link. But the study that started the autism vaccine scare was recently retracted by the prestigious journal that published it 12 years ago, and the lead researcher had his medical license pulled.

Given these developments, some experts hope we have finally reached the end of the debate.

This hope is not likely to become reality anytime soon. Journalist Amy Wallace reports that her Wired story on the controversy triggered a lawsuit (later dismissed) and many harsh comments:

I’ve been called stupid, greedy, a whore. (You can read reader comments here.) I’ve been called the author of “heinous tripe.” J.B. Handley, the founder of Generation Rescue, the anti-vaccine group that actress Jenny McCarthy helps promote, sent me an essay titled, “Paul Offit Rapes (intellectually) Amy Wallace and Wired Magazine.” In it, he implied that Offit had slipped me a date rape drug. Later, he sent me a revised version that omitted rape and replaced it with the image of me drinking Offit’s Kool-Aid. That one was later posted at the anti-vaccine blog Age of Autism.

On Thanksgiving of last year, as the furor seemed to be dying down a bit, the website Age of Autism — the same site that published Handley’s “Kool-Aid” screed — posted a Photo-shopped portrait of me, Dr. Offit and several others who have written or reported on the vaccine issue (and not blamed vaccines for autism or numerous other maladies) sitting around a table, about to dig in to a holiday feast. The greeting on the card said, “Happy Thanksgiving from The Hotel California.” Instead of a turkey, the main course we were about to dine on was a baby.

Still, until Dec. 23, I had this to be thankful for: no one had sued me. Then came the rapping at the door. Here is what Barbara Loe Fisher, who I’d described in my story as “the brain” of the anti-vaccine movement and as “a skilled debater who often faces down articulate, well-informed scientists on live TV,” alleged in her suit: That a two-word quotation (Dr. Offit says of Fisher, “She lies.”) constituted a false statement of fact about her that would cause people to conclude that she is not a person of honesty or integrity. In this way, she alleged, I (along with Dr. Offit, and Conde Nast) had defamed her and caused her to appear “odious, infamous and ridiculous.”

IEPs

In The Brownsville Herald, special ed teacher Pam G. Downing continues her excellent discussion of IEPs. She tells of a discussion with a mother named Abby. An excerpt:

"Well, Abby, let’s look at this together. For example, this section tells us that Ian will be taking the TAKS-Alt. All students will receive a state test, but ones that they can succeed at. Your daughter is taking the TAKS-A, which means we need to look at the accommodations section. "Cindy" is allowed to read out loud to herself during the TAKS-A test. Plus, she is allowed the oral administration of the exam for words or phrases that Cindy asks for."

"Now Ian, when he goes out to PE, is allowed to have foods of minimal nutritional value (FMNV). This way, he has a reward for completing an activity. Ian will always work for a red gummy bear." Abby laughed. She knew her son would do almost anything for those bears. Abby then pulled out a bunch of papers, one called the Functional Behavioral Assessment (FBA). "What’s this about?"

"Well, that paper helps us figure out if Ian needs a BIP. I know it’s a lot. The BIP is a behavioral intervention plan. The nice thing is Ian no longer needs that. The FBA shows that he still needs to be working on issues. For this year it will be that constant "eeeee" he makes when he doesn’t understand the work in front of him. The classroom management plan is fine to take care of that behavior. That means one less document to do."

See earlier post here.

Autism and Stem Cells

As an earlier post explained, there is legitimate research into stem cells and autism. But it will be many years before this research actually does something for people on the spectrum. Meanwhile, as Time reports some are still trying to make a buck:

Stem cell research is on the tip of everyone's tongue and regularly in the news, but a panel of British health officials warns that a global crop of unlicensed clinics is taking advantage of all the publicity.

Clinics in places as varied as Mexico, Thailand, Germany, Russia and China offer stem cell therapies with high price tags and little clinical evidence to back them up. Because such clinics are not illegal, experts in the emerging field of regenerative medicine are combating the misinformation with a guide to good quality treatment.

If you are thinking about trying stem cell therapy for anything from autism to diabetes to lupus, it might be worth your while to peruse the Task Force on Unproven Stem Cell Treatments' website, part of The International Society for Stem Cell Research.

The Guardian adds:

"I've made some very strong comments which could potentially land me in court, but people still go to these clinics," said Professor Peter Coffey, director of the London Project to Cure Blindness at University College London. There are now several hundred clinics around the world which claim to have turned the potential of stem cells into effective treatments. They lure those suffering from diabetes, multiple sclerosis, heart failure, Parkinson's disease, autism, HIV, eye problems, spinal cord injuries and much else besides.

Several thousand people from around the world so far are estimated to have spent up to £20,000 or more in such places. Yet while stem cells could transform medicine, there is as yet scant actual proof of their efficacy. But still the tourists come.

The fact that scientists believe it is likely to be 15 to 20 years before the continuing worldwide flurry of trials and tests results in reliable treatments has not stopped clinics from offering exactly that already. Strong regulation means there are no such places in the UK or America. But the experts did single out the XCell Centre in Düsseldorf, Germany, and Beike Technology, which runs one in Shenzhen in China.

TRICARE Legal Action

Crain's Detroit Business reports:

The Troy law firm that reached a six-figure settlement with Blue Cross Blue Shield of Michigan over coverage for treatment of autistic children wants a federal judge to compel the U.S. Department of Defense to offer the same coverage for military families.

Mantese, Honigman, Rossman and Williamson PC filed an emergency motion for a preliminary injunction this week in its March lawsuit at U.S. District Court for the District of Columbia against the department, defense secretary Robert Gates and Tricare Management Activity, the federal managed care benefit program for families of active duty service members.

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At issue is an alleged defense policy that classifies Applied Behavioral Analysis or ABA therapy for early childhood autism patients to be a form of special education rather than health care, subject to reimbursement from Tricare, according to court records.

See here for a press release about the motion.

For earlier posts on TRICARE, see here and here.

Federal Help with Training

The Rutland Herald reports:

Education officials say a federal grant will help Vermont schools better serve the rapidly growing number of students with autism.

Officials learned Wednesday that Vermont is one of three states selected to take part in a professional-development project headed by the National Professional Development Center on Autism Spectrum Disorders.

Though the grant offers no financial resources, it will bring federally funded experts into Vermont schools to train educators.

“Individuals with autism may need specific types of interventions. And if educators don’t have the type of training needed in order to provide those type of services, then kids are not getting what they need,” says Claire Bruno, autism consultant at the Vermont Department of Education. “I look at Vermont receiving this grant as a terrific opportunity to really increase our capacity here to provide these youngsters the assistance they need.”

A description from the center's website:

The National Professional Development Center on Autism Spectrum Disorders is a multi-university center to promote the use of evidence-based practice for children and adolescents with autism spectrum disorders. The Center operates through three sites that include the FPG Child Development Institute at the University of North Carolina at Chapel Hill, the M.I.N.D. Institute at University of California at Davis Medical School, and the Waisman Center at the University of Wisconsin at Madison. Each year, three states are selected through a competitive application process for a two-year partnership with the Professional Development Center. The Center works in coordination with each state’s Department of Education, Part C agency, and University Center for Excellence in Developmental Disabilities to provide professional development to teachers and practitioners who serve individuals from birth through twenty-two years with autism spectrum disorders.

Special Ed in Milwaukee

The Milwaukee Journal-Sentinel reports (h/t Disability Scoop):

Special education has been a critical shortage area in MPS for years, exemplified by the fact that not one special-education teacher was included in the 482 layoff notices that went out in June. In fact, the district has hired 52 new fully certified special education teachers, said Karen Jackson, MPS director of human resources.

There aren't enough fully licensed special education teachers to go around, so the district leans on alternative-route teacher certification programs that allow teachers to work toward full licensure while teaching with "emergency" credentials.

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All told, a quarter of Milwaukee's 1,100 special-education teachers last year held emergency licenses, reflecting a large national problem in finding, training and retaining such teachers.

According to the U.S. Department of Education, there's a national shortage of 45,000 highly qualified special-education teachers, although determining who counts as highly qualified isn't straightforward.

About 11% of special-education classrooms in the U.S. aren't led by a highly qualified teacher, the department noted in 2008.

Attrition in these positions is high, with one out of seven special-education teachers quitting each year. Nearly one in five Milwaukee students receives special-education services. Yet the city's special-education students lag behind their counterparts elsewhere in the state. In 2009, only 17% of Milwaukee's sixth-graders receiving special education were proficient or advanced in math, and only 15% achieved those levels in reading. Statewide, 37% of students with disabilities were proficient or advanced in math and 44% were at those levels in reading.

"There's no doubt that there's a challenge filling special-education positions," said Pat Yahle, director of special education for Milwaukee Public Schools. "The more challenged the students are, the more challenged the teacher is."

The same is true nationally. Massachusetts granted almost 1,000 teaching waivers last year to allow districts to hire teachers who weren't formally licensed to work with special-education students. At least 22 states have some sort of alternative-certification program for individuals with no previous teaching experience to enter special-education teaching, many of which require no more than a bachelor's degree and a background check.

"Another one of Hollywood's chosen causes"

Newsweek puts a snarky spin on autism and popular culture:

Autism is another one of Hollywood’s chosen causes. The condition has inspired exceptional acting (Dustin Hoffman in Rain Man) and persistent debates (Jenny McCarthy’s stance on vaccines). At its best, Hollywood tells stories that captivate, educate, and illuminate. And this month, Los Angeles magazine, attempts to do just that with a special package of pieces about autism, which you can read here for $3 if you can’t find the magazine on a newsstand or in a bookstore near you.

Inclusion

In Tablet, Marjorie Ingall writes about inclusion in Jewish schools:

I recently chatted with Dori Frumin Kirshner, the executive director of Matan (the name means “gift”), an organization that supports Jewish communities in educating children with special learning needs.

“The Orthodox have always taken on responsibility for educating all Jews,” she told me. “But Conservative, Reform, unaffiliated, and non-denominational institutions—well, the going attitude was, ‘Sorry, we can’t handle that. Bye. It’s not you; it’s us.’ The latent message, of course, was, ‘It’s you.’ ”

Things are slowly changing. More Jewish organizations are calling Matan for help, and a number of Jewish day schools are trying to be more embracing of kids with learning differences. “There’s a big difference from 10 years ago,” Kirshner said. “But it still takes time, attitude change, and advocacy. Clergy, early-childhood, and educational directors, the president of the shul, they need to step up more and take the full responsibility off parents’ shoulders. This is everyone’s bag. It’s a health and human services issue, an educational issue, and a cultural issue—because there are so many kids out there with no entry points to the beauty of Jewish culture.”

Inclusion, Kirshner said, was a policy equal in importance to the civil rights movement. “You don’t have to be from the South or African-American to feel in your kishkes that it’s wrong to leave children separate,” she said. “I feel strongly—just as my mom, a white Jew who grew up in Shreveport and marched and got arrested for civil rights felt—this is wrong. It’s wrong to tell people there’s no room for them at the Jewish communal table. They have to start adding other chairs.”

NorthJersey.com has a piece on inclusion:

Certainly, the subject of inclusion has been receiving a great deal of attention recently. New Jersey’s Statewide Parent Advocacy Network created the New Jersey Inclusive Child Care Project, a project funded by the New Jersey Department of Human Services. The project’s goals include providing information, training and technical assistance on the inclusion of children from birth through age eight in typical preschool, childcare and after-school programs. Their resources include a comprehensive program called Finding Our Way Together, a resource guide available on the website that provides information on inclusion of children at child-care centers, family child care, and after-school care. NJ SPAN is also piloting a collaborative project with the NJ School-Age Child Care Coalition to promote inclusion in high poverty, high immigrant communities. They are providing free resources on the laws dealing with inclusion in programs before and after school.

Also see a related article on parent perspectives.