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Saturday, April 30, 2011

State Insurance Mandate Legislation

In Rhode Island, the Providence Journal reports:

Nineteen-year-old Eric Duquette, salutatorian at Smithfield High School in 2010 and a freshman at Rhode Island College, personifies the possibilities of early, intensive behavioral treatment for children with autism.

Duquette, who lost all language as a toddler and didn’t speak again until he was 5, took the podium in the House lounge Thursday and urged the General Assembly to pass legislation that would require commercial health-insurance carriers to cover medically validated behavioral treatments for children diagnosed with autism. Twenty-six states have passed similar legislation.

He spoke at an autism-awareness event organized by the Rhode Island Autism Coalition, which honored two legislators who have introduced the autism insurance bills for two consecutive years. They are Sen. Edward J. O’Neill, I-Lincoln, North Providence and Pawtucket; and Rep. Rep Peter G. Palumbo, D-Cranston. Both have children with autism.

While the bills are stalled in committee, O’Neill said, he is still optimistic that the legislation will pass, noting that one of the sponsors this year is Senate President M. Teresa Paiva Weed, D-Newport.

Autism Speaks celebrated AZ Governor Jan Brewer's veto of a bill that would have ended insurance mandates:

Autism Speaks, the nation’s largest autism science and advocacy organization, joined families across Arizona and around the country today in applauding Arizona Governor Jan Brewer for her courageous veto of Senate Bill 1593, misguided legislation that would have essentially reversed enacted autism insurance reform legislation and forced families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments -- even though they already have health insurance coverage.

“Governor Brewer showed remarkable leadership by standing up for the best interest of Arizona’s families and ensuring that Arizonans’ health care plans will continue to be regulated by Arizona law,” said Peter Bell, Autism Speaks executive vice president of programs and services. “We thank Governor Brewer for making this decision, which took incredible courage and will have an enormously positive impact on families affected by autism across the state. We also ask that the autism community at large take the time to thank Governor Brewer personally."

Autism Speaks launched a major traditional media, social media and grassroots campaign to persuade Governor Brewer to veto the bill, including a significant television ad buy. Advocates in Arizona and all across the country worked hard for two weeks contacting Governor Brewer to convince her that signing SB 1593 into law would be detrimental to both Arizona citizens and the autism community at large.

Friday, April 29, 2011

In Arizona, Brewer Vetoes Repeal of Insurance Mandates

The Arizona Republic reports:

Gov. Jan Brewer on Thursday vetoed a bill that would have waived many of Arizona's health-insurance mandates and allowed insurance companies from other states to write policies in Arizona.

Senate Bill 1593, passed in the last week of the legislative session, mobilized the groups and individuals who have benefitted from Arizona's insurance mandates, ranging from parents of children with autism to diabetics.

In her veto letter, Brewer said the state's 32 mandates resulted from careful legislative scrutiny over the years and should not be overturned without the same deliberate debate.

Full text of veto letter is here.

Thursday, April 28, 2011

Early Screening

Previous posts have examined early diagnosis and intervention.

The Los Angeles Times reports:

Autism treatment works best the earlier a child is diagnosed and begins therapy. A new screening test for babies at their 1-year-old check-up may be reliable enough to be used in pediatricians' offices around the world, said the authors of a review of the method.

The screening test was performed on 10,479 1-year-olds in San Diego. The babies were the patients of 137 different pediatricians. Parents or guardians gave their permission for the babies to be screened.


The study, published online Thursday in the Journal of Pediatrics, did not determine how many of the children who passed the screening test went on to receive a diagnosis of autism or developmental delay. Moreover, some of the parents of babies who failed the initial screening test did not choose to proceed with additional screening. Finally, the screening test would not be expected to identify the approximately 25% of children who are diagnosed with a different pattern of autism in which they develop normally in the first year but begin to regress some time after their first birthday.

USA Today interview Geraldine Dawson of Autism Speaks:

Q: How common is early screening for autism today?

A: The current recommendation from the American Academy of Pediatrics is that all children be screened for autism at the 18- and 24-months-old well-baby checkups. However, there are still many pediatricians who are not systematically screening for autism as part of routine well-baby checkups.

Q: At what age are most kids seen for initial suspicions of autism? At what age are they diagnosed?

A: Unfortunately, although it is possible to screen for autism in toddlers and diagnose reliably by 18 to 24 months, the average age of diagnosis in the USA is close to 5 years. Similarly, although interventions now exist for toddlers as young as 12 months, often children don't begin intervention until much later in the preschool period. The fact that the kids in this study began intervention, on average, by 17 months was very positive.

Q: Does age of diagnosis vary by region, race or income?

A: Yes. Studies have shown that children from ethnic minority backgrounds and lower socioeconomic status often receive their autism diagnosis at a much later age and require more visits to the doctor to receive a diagnosis.

Q: Could doctors begin using the new screening checklist right now?

A: Keep in mind that the pediatricians using this screening tool were working closely with a university-based center that specializes in autism. The center staff offered training in its use and were able to evaluate and provide recommendations for children who screened positive on the questionnaire. With appropriate training and support from professionals with expertise in autism, pediatricians could certainly use the questionnaire.

Q: Are enough services available for the babies who will need them?

A: All infants who demonstrate developmental delays are eligible for "Birth to Three" services paid for by the state. Some states offer generic intervention, others autism-specific services. Some autism treatment centers offer interventions for infants as young as 12 months, but this is still a relatively new area of research. There are still only a few published studies on interventions for infants with autism.

Q: About one in 110 kids have an autism-like condition. Will better screening increase the prevalence?

A: The CDC is tracking changes of autism prevalence over time. They study children who are 8 because most children are diagnosed by that age. So, detecting autism very early should not increase the prevalence. If providing intervention at a very young age is very effective in reducing symptoms of autism, it is possible that it could actually decrease prevalence of autism by age 8.

Wednesday, April 27, 2011

Survey Research

Chris Mooney finds no evidence of a relationship between partisanship and attitudes toward the vaccine controversy.

Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
M. J. Carey
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.

1. Compare educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder. Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

Tuesday, April 26, 2011

CA Mandate Bill Moves in Committee

Earlier posts dealt with AB 171, the California insurance mandate bill. Marty Omoto writes at CDCAN:

The Assembly Health Committee early this evening gave final approval to AB 171 by Assemblymember Jim Beall, Jr. (Democrat – San Jose) that would require health plans and health insurers to cover screening, diagnosis and treatment of persons with autism spectrum disorders that they currently do not cover. The bill, which received 12 “aye” votes in the Assembly Health Committee, now heads next to the Assembly Appropriations Committee.

The measure could have major impact on California’s budget crisis by requiring insurance companies and health plans to pay for services and therapies currently paid for with state and federal funds through the 21 regional centers that serve children with developmental disabilities that include persons with autism spectrum disorders.

The bill was heard earlier this afternoon, but lacked sufficient votes for passage (as did several other bills) when an initial roll call vote was taken. Final votes were taken just before the committee adjourned early this evening.

MacNeil and Neurodiversity

Many praised the series for taking such a comprehensive look at autism. But not everyone was pleased with MacNeil’s reporting on the issue. In blog posts, comments and e-mails to PBS, self-advocates are chiding the veteran reporter, saying that their perspective was left out. What’s more, they are criticizing MacNeil for comments they say suggest that those with the disorder lack empathy and can be violent.

“There’s always a problem when you talk about autism and do not include autistic people in the discussion,” says Ari Ne’eman, president of the Autistic Self Advocacy Network, who suggests that the series featured “dehumanizing rhetoric” and language insinuating that people with autism are “violent and that we’re a burden on society.”

In a followup interview, Robert MacNeil deals with neurodiversity:


And, finally, a process question also came through on how you chose the guests and the experts that you did.

There's a comment from John Horton, who writes in and says: "I think an adult with autism should have been included on the roundtable. They're talking about them but not to them."

ROBERT MACNEIL: Well, perhaps he's right.

We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.

But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.

Autism Awareness Month Conference at the White House

Senior Adviser to the President Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius spoke to an audience of parents, advocates, and experts at an Autism Awareness Month Conference at the White House. Jarrett spoke of her early involvement with autism as a student at Stanford:

A blog post by Secretary Sebelius:
Helping every American with autism achieve their full potential is one of this administration’s top priorities. At the U.S. Department of Health and Human Services, we continue to strive to meet the complex needs of all people with Autism Spectrum Disorders (ASD) and their families. While there is no cure, early intervention is critical and can greatly improve a child’s development.

Perhaps the biggest step we’ve taken to support those affected by autism and their families happened over a year ago, with the signing of the Affordable Care Act. Now, new insurance plans are required to cover autism screening and developmental assessments for children at no cost to parents. Insurers will also no longer be allowed to deny children coverage for a pre-existing condition such as ASD or to set arbitrary lifetime or annual limits on benefits.

Also, thanks to the new law, young adults are allowed to stay on their family health insurance until they turn 26. For a young adult with autism spectrum disorder and their family, that means peace of mind. It means more flexibility, more options, and more opportunity to reach their full potential.

Ultimately, there is more support for Americans with autism than ever before. This means more promise of new breakthroughs that will help us understand autism even better. But in order to continue meeting the needs of people with autism, the Combating Autism Act must be fully reauthorized. We still have a long way to go. Working collaboratively with important partners, the Affordable Care Act and the Combating Autism Act will allow us to continue important research and develop and refine vital treatments.

There are still many unknowns. However, one thing is certain. We will continue to work harder than ever to find solutions and provide support to individuals with ASD and their families. Together, we can help reduce disparities and allow everyone to actualize their greatest potential.

Monday, April 25, 2011

Disability Rights Bill in Illinois

The Daily Northwestern reports:

House Bill 3010 expands the definition of "disability" to include any mental, psychological or developmental disorder such as autism. This guarantees individuals on the autism spectrum receive equal rights to public facilities like gyms and theaters.

State Rep. Daniel Biss (D-Evanston) passed the bill, his first since being elected in November, through the state House on March 29 to protect autism spectrum disorders as disabilities under the Illinois Human Rights Act.

"The diagnoses have made society grapple with the question of how best to care for, support and include this population," Biss said. "I thought legislation to help work on that would be meaningful."

Biss said the legislation is especially relevant due to the spike in autism diagnoses during the past 10 to 15 years. About one out of 110 children have an autism spectrum disorder, according to the Centers for Disease Control and Prevention's website.

"There have been instances of kids getting thrown out of restaurants, or libraries or public transportation, and it's worth putting this provision legally into the state," he said.

Earlier this year, Biss explained:

“This legislation is about fairness,” Biss said. “Autism is a disability that has become better understood and more frequently diagnosed in recent years. Those who are affected by it deserve the same rights and recognition we give to others with disabilities.”

House Bill 3010 was modeled after a New Jersey law which expands the state’s discrimination laws to include any mental, psychological, or developmental disability, including autism spectrum disorders. The bill ensures that no one diagnosed with these disorders is denied access to libraries, restaurants, gyms, pools, theaters and other public facilities.

Sunday, April 24, 2011

Preliminary Data on Wandering

The Kennedy Krieger Institute reports on some preliminary data:

Based on responses to the IAN Elopement and Wandering Questionnaire, it is clear that roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings. These figures are especially sobering when 35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means.

Saturday, April 23, 2011

New York Times Magazine on Wakefield

In The New York Times Magazine, Susan Dominus profiles Andrew Wakefield. It opens with a talk in Tomball, Texas:

In his presentation, Wakefield sounded impatient but righteous. He used enough scientific terms — “ataxic,” “histopathological review” and “vaccine excipients” — that those parents who did not feel cowed might have been flattered by his assumption of their scientific fluency. He also tried to defend himself against a few of the charges laid out in The British Medical Journal — offering defenses that did not hold up before the journal’s panel of editors but were perhaps enough to assure an audience of his fans that he did, in fact, have defenses. Some part of Wakefield’s cult status is surely because of his personal charisma, and he spoke with great rhetorical flair. He took off his glasses and put them back on like a gifted actor maximizing a prop. “What happens to me doesn’t matter,” he said at one point. “What happens to these children does matter.”

After the talk, a line of visitors snaked down the length of the lobby, his followers waiting to have Wakefield sign a book he wrote about his experience and convictions, “Callous Disregard.” “All right, love?” he said, handing the book back to one mother. “Of course,” he said when asked for a photo. A pregnant woman in the lobby told me she was there trying to educate herself. Another woman, with tears in her eyes, blamed herself for not working harder to obtain a separate measles vaccine for her possibly autistic child.

Michelle Guppy, the coordinator of the Houston Autism Disability Network and the organizer of the Tomball event, said she believed her own autistic son benefited greatly from one aspect of Wakefield’s work: his conviction that untreated gastrointestinal problems could be behind some of autism’s symptoms. It was Guppy, it turned out, who thought to hire the armed guards “to make the statement,” she said, “that this is neutral ground, and it’s going to be civil.” Guppy, a mother of two who was elegantly dressed for the occasion, made no pretense of neutrality herself. She narrowed her eyes when she learned that a writer from The New York Times was there to write about Wakefield.

“Be nice to him,” she said, “or we will hurt you.”

MacNeil and the "National Health Emergency"

The last segment of the MacNeil series is a panel discussion:

DR. THOMAS INSEL: I think people are looking down the road far enough to say this is a mounting problem. Let me put a real clear point on this. We have services, which we can provide. But we don't understand this disorder well enough to know how to cure it, how to prevent it, and even at this point, how to treat the core symptoms medically. Even though we recognize this is a developmental brain disorder, we're not at a point yet where we have the kinds of effective, rapid, powerful treatments that we really are looking for.


ILENE LAINER, New York Center for Autism: Over the last 15, 20 years, we've seen a change in autism education where we have a better understanding of what we can do to help children with autism learn and grow. And that's in the education system not the medical. We have a better understanding of what that is. The problem is it's not available to most of the children out there with autism in this country.


JON SHESTACK: You know, it's not a competitive sport, right? I mean, everybody's suffering is real. No one's suffering is worse or not worse than anyone else. But if you look at it this way, someone has autism from when they're 2 till they're 78. And they cost a bundle of money. Then no, we're not spending enough money on it.

If you -- I mean, the story as with many other diseases, you get a disease, it's tragic. You either get better or you die, at which point, you don't cost anybody any money. But with autism, you keep causing pressure on the family, the community, the school, the state forever. And so, I would say, no, there's not enough money. There's not enough money spent on it.

And it's not a question of taking it away from somebody else, it's a question of putting more toward what society should put its money toward, which is helping the most vulnerable people, who by the way, are your grandson, my son, her son. They are not like some freaks you see in a movie, or six aisles down in the supermarket, if it's one in 150 or one in 110, whatever that number is, it's like the last four aisles in your church. It's everybody. It's all over the place.

Friday, April 22, 2011

Autism Speaks and CA Mandate

A California action alert from Autism Votes, an initiative of Autism Speaks.

There are two hearings on autism insurance reform legislation next week. Tuesday's hearing will take place before the Assembly Health Committee at 1:30pm for AB 171 and Wednesday's hearing will take place before the Senate Committee on SB 166. You can read Autism Speaks letter of support for both bills here.

Today we are asking you to give your advocate support for AB 171. Even if you have already done this action item we need you to do this again to keep the issue fresh in their minds!

Ask your Assemblymember to speak with their colleagues on the Assembly Health Committee to vote YES on AB 171 when it is called for a vote in committee.

Autism Society and Legislation in Congress

From the Autism Society:

Action Needed: Contact Your Representatives this May 4 for the IDEA Fairness Restoration Act

April 21, 2011
By Autism Society

ON WEDNESDAY, MAY 4, 2011, PLEASE CONTACT YOUR SENATORS AND REPRESENTATIVES AND ASK THEM TO COSPONSOR THE IDEA FAIRNESS RESTORATION ACT (S.613 AND H.R. 1208). This bill will allow parents to recover expert witness fees when they prevail in due process hearings and court actions under the IDEA.

IDEA gives parents the right to an impartial due process hearing, but parents must be able to afford expert witnesses to testify at those hearings. Expert witnesses can include psychologists; physicians; speech, occupational, physical, and other therapists; educational experts; positive behavioral support experts, and others. Without expert witnesses, most parents cannot prevail. Sometimes, school districts sue parents and parents must have expert witnesses to adequately defend themselves.

The IDEA Fairness Restoration Act will restore the right to recover expert witness fees for parents and students with disabilities. Congress intended that parents have this right when it amended the IDEA in 1986. But in 2006, the Supreme Court acted contrary to this intent and held that parents could not recover expert witness fees in Arlington Central School District v. Murphy. Plaintiffs in other civil rights cases, like ADA cases, recover fees, and this bill would simply give parents the same right.

ON WEDNESDAY, MAY 4, 2011, PLEASE CONTACT YOUR SENATOR AND REPRESENTATIVE AND ASK THEM TO COSPONSOR S.613 and H.R. 1208. It is crucial that Congress hear from parents of children with disabilities, advocates, attorneys, family, friends, and colleagues that this legislation is very important. If you cannot do this on May 4, please do it the week of May 2-6, 2011.


New Legislation Proposes to Meet Comprehensive Needs of All Affected by Autism

April 15, 2011
By Autism Society


Media Contact:
Amanda Glensky
Media Specialist
Autism Society
301-657-0881 x 9015

Bethesda, MD (April 15, 2011) – As American families affected by autism are struggling now more than ever to provide for their loved ones, the Autism Society thanks five U.S. Senators who today introduced a comprehensive strategy to address the needs of families. U.S. Senators Dick Durbin (D-IL), Bob Casey (D-PA), Robert Menendez (D-NJ), Frank Lautenberg (D-NJ) and Kirsten Gillibrand (D-NY) have cosponsored the Autism Services and Workforce Acceleration Act, which would authorize federal funding for a wide range of service, treatment, support and research initiatives.

“Those of us who have children with autism worry about their futures, particularly the transition from school to adulthood, when families lose those valuable services and supports previously afforded through the school system,” said Jeff Sell, Autism Society Vice President, Public Policy and General Counsel, who has twin 16-year-old boys with autism. “This bill addresses the concerns of parents by providing valuable assistance in vital services for adults, including postsecondary education, employment and residential services, all of the pieces that need to fall into place for a person to reach his or her fullest potential. The Autism Society thanks Senators Durbin, Casey, Menendez, Lautenberg and Gillibrand for their attention to the needs of the families we serve today.”

The Autism Services and Workforce Acceleration Act aims to meet the comprehensive needs of, and improve the quality of life for, individuals with autism and their families by:

• Creating a demonstration project to provide a full array of services like post-secondary education, vocational skills training, employment, and residential services for adults with autism to improve their quality of life and enable them to live as independently as possible;
• Creating a demonstration project to develop Autism Care Programs. These programs would provide a full array of medical, behavioral, mental health, educational and family care services to individuals and families in a single location. These comprehensive treatment facilities would increase access to quality health care services and communication among health care providers, educator and other providers of services;
• Developing a national multimedia campaign to increase public education and awareness about healthy developmental milestones and autism throughout the lifespan;
• Creating a national training initiative on autism and a technical assistance center to develop and expand interdisciplinary training and continuing education on autism.

“Almost 26,000 families in Illinois struggle with autism,” said Senator Durbin. “Because the cost of autism-related services is so overwhelming for these families, the State of Illinois passed legislation requiring health plans to provide coverage for the diagnosis and treatment of autism. This bill builds on commitments the federal government has already made for people with autism, by enhancing not only access to health care but investing in essential services that will improve the lives of youth and adults with autism.”

This legislation builds on the Combating Autism Act, signed into law in December 2006, which calls on the federal government to increase research into the causes and treatment of autism, and to improve training and support for individuals with autism and their caretakers.

Thursday, April 21, 2011

MacNeil on Autism into Adulthood

Robert MacNeil notes that IDEA does not help adults:

Earlier posts (here and here) have quoted Peter Gerhardt:
ROBERT MACNEIL: Peter Gerhardt is a nationally known expert on adolescents and adults with autism. He directs the program for teenagers at the McCarton School in New York.

Gerhardt considers the disabilities education law basically a civil rights issue for children but not so far for adults.

PETER GERHARDT: After the age of 21, there's very little. It's more a - we're going to provide services if we have the money and if you fit into this service. So more and more we're seeing kids, you know, graduate out of high school to nothing. They go onto waiting lists, they sit at home.

ROBERT MACNEIL: Gerhardt says there is a critical shortage of people who can work with adults with autism.

PETER GERHARDT: First of all, they need -- staff people who understand the needs of adults. They need trained people who can work with them. And in almost every state of the union, the credentials to work with adults with autism: high-school diploma, driver's license and a criminal background check.

ROBERT MACNEIL: And paid what?

PETER GERHARDT: And paid just above minimum wage usually. Maybe $8, $10 an hour. It is not considered a career choice. Nobody goes into the field of adult services looking at it as a career.

ROBERT MACNEIL: Gerhardt wants society to become as comfortable with the needs of adults with autism as it has with the physically disabled.

PETER GERHARDT: Because of the Americans with Disabilities Act, we've seen significant changes in our environment. We see handicapped parking spaces, and we see ramps into buildings, and we see handicapped bathroom stalls. And we see all these things that didn't exist, you know, 10, 15 years ago. As a society, we've gotten very comfortable with the idea of accommodations for people with physical disabilities. We now sort of get that. For people with neurological challenges, however, we're still at a loss about how to accommodate.

MacNeil on Autism and Education

Tonight's segment focuses on educational issues:

MacNeil speaks to Rima Ritholtz, the principal of PS 176, an autism school in the Bronx:

RIMA RITHOLTZ: My educational philosophy is that they're children first before they're children with autism. And they deserve the exact same quality of programming and professionalism that any student would get anywhere else.

ROBERT MACNEIL: Her teacher-to-student ratio begins at one teacher plus a teacher's aide to six students, moving as students progress, to less-restrictive classrooms, with eight to 12 children.

RIMA RITHOLTZ: We're trying to approximate the general education programs and hopefully, eventually, we'd like our students to return to general education.

ROBERT MACNEIL: And what proportion do?

RIMA RITHOLTZ: I would say a very small proportion. Out of 700 students, I would say maybe 10 students return.

He also mentions the state's only charter school for autism:

ROBERT MACNEIL: Then a charter school for autism was announced, with 30 places to be filled by lottery.

JESSE MOJICA: I heard about the charter school, and I said wow, that's fascinating. One on one, you know, teaching. And I said that's what Adam needs. And we put our hat in the lottery. And we found out that Adam just barely missed it. And it was devastating to us, it was devastating. Here was something that I felt would help my son, that I felt powerless to help him. I was heartbroken, I was, but it is the way it should be. I mean it is by lottery, and there is no preference to anybody, no matter where you are from, or who you know, and that's fair.

ROBERT MACNEIL: But another boy from the Bronx did win the lottery to the charter school in Manhattan.

CAROL SANTIAGO: A gift from God. We won the lottery. That's what I like to tell people, because it really was a lottery.

Wednesday, April 20, 2011

MacNeil on Autism Causation

The NewsHour's MacNeil series takes on the issue of causation, including the vaccine controversy:

Watch the full episode. See more PBS NewsHour.

ROBERT MACNEIL: One issue science considered settled for years won't go away: the parental belief that vaccines cause autism. Public health officials have steadily maintained there is no valid, scientific evidence of such a connection; all epidemiological studies have proved negative. But now, bowing to public opinion, the body that sets priorities in autism research, The Inter Agency Coordinating Committee, has recommended studies to determine whether small subgroups might be more susceptible to environmental exposures, including vaccines.

DR. GERALD FISHBACH: Despite many, many, many epidemiological studies, no evidence that current vaccines in their present form have triggered autism. There are two prevalent things going on here: vaccination and autism. But trying to correlate those two have failed to date.

DR. DAVID AMARAL: So I think it's pretty clear that, in general, vaccines are not the culprit. If you look at children that receive the standard childhood vaccines. If anything those children are at are at slightly less risk of having autism than children that aren't immunized. It's not to say, however, that there is a small subset of children who may be particularly vulnerable to vaccines if the child was ill, if the child had a precondition, like a mitochondrial defect. Vaccinations for those children actually may be the environmental factor that tipped them over the edge of autism. And I think it's -- it is incredibly important still to try and figure out what, if any, vulnerabilities in a small subset of children might make them at risk for having certain vaccinations.

DR. MARTHA HERBERT: I think it's possible that you could have a genetic subgroup. You also might have an immune subgroup. There are a variety of subgroups. But the problem with the population studies is they don't they aren't necessarily designed to have the statistical power to find subgroups like that if the subgroups are small.

DR. DAVID AMARAL: I think more importantly what the whole vaccine issue has done is has opened our eyes again to the idea that the immune system is an important component of autism.

Bill to Repeal Arizona Mandate

The legislature has approved a measure to let out-of-state health insurers sell policies in Arizona's small group and individual markets. They wouldn't have to abide by Arizona's benefit mandates, but would have to follow their own states' mandates. In-state insurers would also have the option of selling policies similar to those sold by out-of-state rivals.

Buyers would have far-greater scope to buy the policies that fit their medical needs and wallets.

"This is about expanding markets," said Republican state Sen. Nancy Barto, who introduced the bill. "A lot of Americans are waiting for good, free-market reforms, and this is one that is going to make a big difference."

Insurance is largely state regulated. Each state, lobbied by medical and patient groups, mandates various benefits that all must pay.

The number of state mandates rises each year. In 2004 there were 1,823, according to the Council for Affordable Health Insurance. Now it's 2,156. Unusual mandates include birthmark removal, athletic trainers and massage therapists. Rhode Island has the most with 69, Idaho the least with 13. Arizona has 33.

"It would overturn mandates in Arizona, and one of the most important for us is the health insurance mandate that provides autism coverage for children," said Dr. Doreen Granpeesheh, executive director of the Center for Autism and Related Disorders.

Twenty-four other states also have autism mandates.

"This bill does not repeal any mandate," replied Dr. Eric Novack, a conservative health care activist. "The goal is to give people a choice."

Dr. Doreen Granpeesheh writes at the Center for Autism and Related Disorders:

Dear Friends, I need your help today with an urgent matter. As you may know, a few years ago, the State of Arizona passed a Bill that approved Insurance coverage for the behavioral treatment of Autism. This bill was one of the first passed and it has already changed the lives of numerous families and children. Today, the Arizona House of Reps repealed the Bill. Of course this came as a great shock to our families and we are very concerned that it will also produce a precedent for other States who have or are in the process of passing similar insurance bills.

We are asking everyone we know to contact the Governor of Arizona today (or as soon as possible) to ask that she veto SB 1593.

I know many of you are from other States, but I urge you to help us in this process because I believe this may endanger future bills in other states as well. If you have personal contact with celebrities, government officials or representatives of your state, please ask them for help as well. Your efforts are much appreciated.

The link to the governors website is:

On this website, there is a section where you can submit comments. Please ask the Governor of Arizona to veto SB 1593. There is also a phone number you can call if you would like direct contact with the Governor’s office.

From the Autism Speaks blog:

Autism Speaks has announced a major, intensive two-day TV ad campaign, running April 19-20, that will call on Governor Jan Brewer to veto a misguided bill that would repeal enacted autism insurance reform legislation and force hundreds of Arizona families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments –– even though they already have health insurance coverage.

“Neighbors,” will run nearly 200 times over two days on Phoenix’s network TV affiliate stations – KNXV-TV (ABC), KPHO-TV (CBS), KSAZ-TV (FOX) and KPNX-TV (NBC). The ads juxtapose two families who have a child with autism – one of whom is getting the treatments he needs because his parents’ insurance company covers his therapies, and another who isn’t because his insurer is not required to provide coverage. The ad calls on viewers to call Governor Brewer and urge her to veto the bill.

Nick's Law 2011

KOTV reports on the frustrations facing supporters of an insurance mandate in Oklahoma:

Twenty-six states currently have autism related insurance mandates. Representative Mike Brown wants Oklahoma to become number 27. That's why he wrote Nick's Law.

See map of states and current autism insurance mandates.

"We always want to be like the rest of the nation. Lets be at the forefront here and take care of our kids," said Brown.

Read Brown's bill.

His original version of Nick's Law called for an insurance mandate that voters would have to approve. It would force insurance companies to cover all autism related therapy, including occupational, speech, physical and behavioral, ABA. But, his bill was not heard in committee and when he tried to get the Speaker of the House Kris Steele to allow a vote on the floor, he refused.

"I know there's strong support for it with most legislators, across the aisle, there's strong support for it. But, the powers that be right now, I'm not speaking for why, it's just not happening," said Brown.

By powers that be, he's talking about Speaker of the House Kris Steele.

"I do not favor this particular proposal," said Steele.

Instead, Steele wants to give his autism bill, that passed two years ago, time to work.

"I really believe we ought to give the pilot program an opportunity to work before we do anything that's going to increase the cost of health insurance for all Oklahomans," said Steele.

Read Steele's bill

Tuesday, April 19, 2011

Autism and Abuse

Police are looking for additional victims after a man employed as an in-home caregiver was arrested for allegedly molesting an autistic child.

Jeremy Shawn Stockton is charged with multiple counts of lewd acts against a child under the age of 14.

Stockton was arrested after the boy came forward with details of the alleged molestation.

The 29-year-old is an employee of Wellspring, a local agency that specializes in behavioral intervention for young children with autism.

Since May 2008, Stockton has worked for Wellspring as an in-home caregiver for developmentally disabled children, according to the LAPD.

He has also been a special education trainee at Ulysses S. Grant High School in Van Nuys.

Although not a YMCA employee, in 2009, he worked among developmentally disabled children at the YMCA facility in La Canada.

In Florida, The Sun-Sentinel reports:
The boy was autistic, severely limited in his ability to speak and interact.

The teacher's aide assigned to him said she was in fear one day when he began acting aggressively, a behavior not uncommon in children with autism.

But the boy's parents say the aide was the aggressive one, picking up a chair, acting like a lion tamer as the boy cowered in fear. Finally, the parents say, the aide threw the chair at the boy, striking him in the legs.

The case highlights the challenges faced by those who care for some of the most vulnerable students in public schools. An attorney for then-teacher's aide Talia Sabo said she was acting in self-defense against the teenager, who was a student at Monarch High School in Coconut Creek at the time of the May 2008 incident.

"He was being very aggressive," said the lawyer, Maidenly Macaluso. She said the chair fell out of Sabo's hand and was not thrown.

More than 3,000 children diagnosed with some form of autism are enrolled in Broward's public schools. In Palm Beach, the figure is 1,850. Those who are high-functioning display symptoms that might go unnoticed by a casual observer. Low-functioning students struggle with basic communication and socialization skills.
The lawsuit was settled last year, with the school district agreeing to pay $25,000. But a guardian ad-litem for the boy determined in December that the settlement, which included attorney's fees, was not in the boy's best interest.

"I think $25,000 is far too low" to compensate the boy for what he allegedly suffered, said the guardian, Matthew Scott, in a federal court filing.

The case was reopened and is pending in federal court. School officials declined to discuss an open case.

Monday, April 18, 2011

MacNeil on Increasing Numbers

Part 2 of the series

Watch the full episode. See more PBS NewsHour.

RICHARD GRINKER, George Washington University: It's where somebody who previously had the identical symptoms now is conceptualized differently. And so, if you went back 30, 40 years, and you looked at people who were diagnosed with mental retardation or who were diagnosed with what was then called childhood schizophrenia, you would find that those people, 30 years ago, would qualify for the diagnosis of autism today. And I suspect that we may see the prevalence of autism continue to increase, not because there are more cases. They were there all along, perhaps, but because we're getting better at locating them, finding them and delivering services to these children and adults who really need help.

ROBERT MACNEIL: But a majority of the researchers we talked to believe that wider diagnosis explains only part of the increase in autism numbers. The rest remains the object of much scientific speculation. Among others, Dr. Irva Hertz-Picciotto, who heads the Division of Environmental and Occupational Health at UC-Davis, sees many possible environmental factors.

IRVA HERTZ-PICCIOTTO, University of California, Davis: There is a group that did look at the diagnostic substitution explanation. They thought that maybe explained a quarter to a third. But in addition to that, there has probably been an environmental contribution for a long time. We, in fact, know that some of the potential environmental causes do include, for example, infectious agents.

ROBERT MACNEIL: Do you have candidate factors for those factors that may be fresh in the environment?

IRVA HERTZ-PICCOTTO: I have a lot of candidate factors, actually. And they include nutritional factors, infectious agents, chemicals in our environment, including chemicals in the household products that we use every day. There are a variety of factors that could be influencing development, and they may play a role at different points in development. But I think multiple factors contribute not just across the population but within any one individual. So when I say that I think autism is multifactorial in its causation, I think that applies to even at the individual level so that it might take two or three susceptibility genes combined with two or three environmental factors at critical junctures.

ROBERT MACNEIL: Which might explain why individuals with autism are so different, even though they share some obvious symptoms.

IRVA HERTZ -PICCOTTO: Exactly. Exactly.

RICHARD GRINKER: And I say, "OK, there's this big prevalence increase in autism. That's undeniable. There's a prevalence increase." Whether it means that there's an increase in the real number of people with autism or not, there's a prevalence increase. But I see it as progress. I really see it as an achievement to be able to identify these kids who previously were either misdiagnosed or maybe had no diagnosis at all.

Sunday, April 17, 2011

The MacNeil Reports Begin

PBS has started posting the Robert MacNeil NewsHour reports on autism:

Watch the full episode. See more PBS NewsHour.

The segment focuses on his ASD grandson. At one point, he has a heartbreaking conversation with his 10-year-old granddaughter:
NEELY: I just don't like how autism affects the family. It just - it seems like it takes up too much time, and you usually get really bored of autism, because it's in your life all the time.

ROBERT MACNEIL: What things would you do if you didn't have a brother with autism?

NEELY: It just seems that a lot of money is spent on Nick's vitamins and Nick's doctors' appointments and Nick's everything, and it would change if we didn't have to get all that stuff.

ROBERT MACNEIL: I see. Are you worried about Nick?


ROBERT MACNEIL: Tell me what you're worried about, about him.

NEELY: Well, if he's going to stay autistic for the rest of his life.

ROBERT MACNEIL: Yes. And what would that mean, if he were?

NEELY: I don't know. It would get harder when he gets older, and there wouldn't be as much services to help him. Sometimes I worry that he might get lost because he doesn't really know what to do.

ROBERT MACNEIL: When you think about the future with Nick, what do you feel about that?

NEELY: Well, I hope that I -- I hope that he doesn't have to stay with me, kind of, and that I hope that he gets healed soon. Sometimes when other people, they -- their lives seem perfect, and when yours -- when yours -- you have to do something that you don't like, you don't usually want to do it, and though your autistic sibling does, and it seems unfair. And it seems like they get what they want and you don't.

ROBERT MACNEIL: Well, one of the things about life is that we all learn we have to do things we don't want to do, whether there's autism around or not.

NEELY: Yes, but it seems like it happens too much. I mean, there's going to be a few times when that happens, but it seems with an autistic brother or sister, it always happens.

Saturday, April 16, 2011

Autism and Budget Politics

This week, President Obama attacked the House Republican budget proposal:

It’s a vision that says up to 50 million Americans have to lose their health insurance in order for us to reduce the deficit. Who are these 50 million Americans? Many are somebody’s grandparents -- may be one of yours -- who wouldn’t be able to afford nursing home care without Medicaid. Many are poor children. Some are middle-class families who have children with autism or Down’s syndrome. Some of these kids with disabilities are -- the disabilities are so severe that they require 24-hour care. These are the Americans we’d be telling to fend for themselves. says:

It’s anyone’s guess as to how states would react in 10 years to Ryan’s proposal. The same goes for how states will cope with rising health costs. The administration’s 15 million figure is speculation, and so are Obama’s claims that "poor children," "children with autism" or "kids with disabilities" would be left "to fend for themselves." The Ryan plan in no way says that states don’t have to cover such individuals. Instead it says that states would have "freedom and flexibility to tailor a Medicaid program that fits the needs of their unique populations."

Thursday, April 14, 2011

The Autism Baby Boom

Amy Lennard Goehner reports at The New York Times:
"We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”


Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.


Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”

Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

At, OAR President Peter Gerhardt writes on policy responses:

• There exists a significant need to further identify and research potential evidence-based, and socially valid, interventions for adolescents and adults with autism in the community. While interventions based upon the principles of applied behavior analysis have the most research, much more is necessary given the current emphasis on life in the community.

• Adult outcomes indicate that transition plans developed under the Individuals with Disabilities Education Act of 2004 (IDEA) for individuals with ASD fail to comply with the transition requirements contained therein such that individuals with autism are generally not provided with the skills necessary to successfully move from school to post-secondary education, integrated employment (including supported employment), adult services, independent living, or community participation (emphasis added). Not only does this need to change but the fiscal resources necessary to support such change are, potentially, available, under IDEA.

• Within the developmental disabilities adult system more effective strategies of staff recruitment, training, and retention need to be developed and implemented on a consistent basis to ensure both better-trained staff and more consistent programs and supports for adults with ASD.

• While continuing the necessary focus on biomedical, genetic, and/or etiological research, an addition emphasis on research addressing "quality-of-life" and related intervention variables for adults with ASD needs to be actively implemented and the results disseminated in such a way to accessible to both families and professional staff.

• Efforts need to be undertaken to shift at least some of the focus of current public awareness efforts away from emphasizing the deficits and challenges associated with living with ASD to include attention to the strengths and competencies of individuals on the spectrum and the benefits of their active inclusion in adult life in the community.

The Thorsen Case

Reuters reports:

A scientist in Denmark has been indicted by a federal grand jury in Atlanta for allegedly stealing $1 million in grant money that the Centers for Disease Control and Prevention had earmarked for autism research.

U.S. prosecutors on Wednesday said they are seeking to extradite Poul Thorsen, 49, accused of wire fraud and money laundering.

He used the stolen money to buy a home in Atlanta, a Harley Davidson motorcycle and two cars, prosecutors said.

"Grant money for disease research is a precious commodity," said Sally Yates, U.S. attorney for the Northern District of Georgia, in a news release.

"When grant funds are stolen, we lose not only the money, but also the opportunity to better understand and cure debilitating diseases."

Thorsen, a visiting scientist at the Atlanta-based CDC in the 1990s, helped two government agencies in Denmark obtain $11 million in research grants.

He moved back to Denmark in 2002 to be principal investigator for the program. Prosecutors said he was also in charge of administering the research dollars, earmarked in part to study the relationship between autism and exposure to vaccines.

The Age of Autism has a series of links, arguing that the case undermines research showing no connection between autism and vaccines.

Wednesday, April 13, 2011

Ohio Autism Scholarship Program

A post last fall noted mixed reviews for Ohio's Autism Scholarship Program. Also see comments from the Autism Society of Ohio. For a recent positive view, see a release from School Choice Ohio:

April is Autism Awareness Month, and Ohio's Autism Scholarship Program has become a vital tool for families with a child who has been diagnosed with the disorder. The program allows parents who are not satisfied in their child's traditional educational setting to gain access to private educational options.

"The Autism Scholarship Program provides great resources for families of students with autism," said School Choice Ohio Executive Director Chad Aldis. "It is a life saver for parents struggling with the challenges of their autistic children in Ohio's educational system."

"The Autism Scholarship improved my life by helping me to communicate more, express my emotions, have better confidence in myself, and be a more active person in my job and community," said Kevin Carr, an Autism Scholarship recipient.

Currently, more than 1,600 students participate in the scholarship program, and there is no limit to the number of students who can apply.

The Autism Scholarship Program was created in 2003 to provide parents an opportunity to enroll their child with Autism in private education programs that provide specialized instruction from certified teachers and focus on the child's social and academic needs. Scholarships are worth up to $20,000 per student per year.

The Autism Scholarship is often used by parents to gain access to early intervention services and can be used for individualized programs that may include several components, such as speech therapy, social skill development, and behavioral therapy.

Autism is a complex neurobiological disorder that involves impairments in communication, social and behavioral domains, and these symptoms can range from very mild to severe. It is a lifelong disease that crosses all racial, ethnic, and social lines.

While the Autism Scholarship Program is a great resource for students living with the disorder, no such program currently exists to give children with other disabilities in the state the same educational choices. A program is being debated now in the Ohio General Assembly that would provide improved educational opportunities for children with special needs. Contact School Choice Ohio at 614-223-1555 to find out what this proposed legislation could mean for children with disabilities in our communities.

For more information about the Autism Scholarship Program and a list of participating private providers, visit

Tuesday, April 12, 2011

ABA: The Good, the Bad, the Contentious

Today, autism in children has become more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined, according to a national autism organization, and TRICARE now covers Applied Behavior Analysis therapy to treat eligible beneficiaries.

Autism Speaks, a national autism science and advocacy organization, defines autism as "a group of complex developmental brain disorders." Today, about one in every 110 children is diagnosed with autism.

April is Autism Awareness Month, a month that's been observed by the Autism Society since the 1970s, according to their website. Autism Awareness Month highlights the growing need for concern about autism and its potential treatments.

Many different types of treatment exist for an autistic individual. However, one of the more prominent techniques that has gained status recently is ABA therapy. According to the National Institute of Child Health and Human Development, ABA may help reduce problem behaviors associated with autism and teach vital new skills.

As part of the growing recognition of ABA therapy, TRICARE now covers this type of treatment for eligible beneficiaries. It's part of TRICARE's Autism Services Demonstration, an enhanced benefit under the ECHO program. ECHO - or Extended Care Health Option - is TRICARE's benefit for individuals with disabilities.
With autism legislation blocked three years in a row at the state Capital, Eric Littleton said he is interviewing for jobs out of state and will be leaving Oklahoma as soon as he can find work.

“The policies that are currently being promoted do not reflect the values or the faith that the people of Oklahoma embrace, and I continue to cry out to my brothers and sisters to speak out on this unbiblical status quo,” Littleton said.

A series of reforms were passed in 2009 geared to help children with autism. Sooner Success is a program that trains primary care physicians and pediatricians to be specialists in diagnosing autism from birth to age 3. Twenty Oklahoma doctors are specialized in diagnosing autism, he said.

Solomon Littleton was 5 years old in 2008 when he contracted the rare neurological disease Landau-Kleffner syndrome. Eric and Marci Littleton saw their son’s normal life deteriorate with a loss of motor skills. Soon Solomon could no longer feed himself, toilet or dress himself. His behavior became erratic as he would slam his body into walls at home.

House Bill 1248 by state Rep. Randy Grau, R-Edmond, was intended to include children with autism spectrum disorders in the state’s high risk insurance pool. The bill was killed in March by the Appropriations and Budget Committee. The high risk pool was created by the Legislature in 1995 to serve those who have been denied health insurance due to a serious health condition.

House Speaker Kris Steele, R-Shawnee, said he wants to delay consideration of Grau’s bill pending evaluation of a new Sooner Start program that is based on Senate Bill 135. SB 135 went into effect in January. It was authored by Steele and state Sen. Ron Justice.
Maura Lerner reports at The Minneapolis Star-Tribune:

Eric Larsson, a Minneapolis psychologist and leading advocate, says ABA is more than just a treatment -- it's a way to rescue children "from the ravages of autism." He tells parents that nearly half of children can recover if they start ABA soon enough. "They're coming to us because they want to cure their child," he said. "Just like you or I would do if we had cancer."

But other autism experts say the benefits of ABA treatment have been blown out of proportion. They say there is scarce evidence that it's really better than less costly alternatives.

"A lot of claims out there are inflated," said Barbara Luskin, a psychologist with the Autism Society of Minnesota. "Autism is a difference in the way your brain is. You're not going to cure it."

This year, for the third year in a row, the Minnesota Legislature is debating whether to require the state's health insurance plans to cover ABA treatment for autism, a speech and behavior disorder that is said to affect 1 in 110 children nationally.

More than 20 states have adopted such mandates since 2007, says Lorri Unumb of Autism Speaks, a national advocacy group. Ultimately, she hopes it will become the law of the land as part of national health reform.

"There is no controversy at all about whether ABA is the gold-standard treatment," says Unumb, a lawyer and senior policy adviser. "The only discussion is whether we can afford it."

But among medical experts, there is no consensus that ABA is necessarily the best, says Dr. James Moore, an autism specialist at Children's Hospitals and Clinics of Minnesota.

"If we all believed it, then we wouldn't recommend anything else," Moore said.

In Minnesota, health plans typically pay for certain types of autism treatment, such as speech and occupational therapy. But most draw the line at ABA, calling it costly and unproven.

"The concern is that you've got desperate parents," said Glenn Andis, a psychologist and senior vice president of Medica Health Plans, which opposes the mandate. "You've got a provider who says they've got all the answers, and they're going to cure their kids? Need I say more?"

Monday, April 11, 2011

Diagnosis Gap Narrow -- But Does Not Close

A press release from the American Sociological Association:

Study: Socioeconomics Playing Reduced Role in Autism Diagnoses
But Poor Children From Low-Income Neighborhoods are Still Underdiagnosed

WASHINGTON, DC, April 6, 2011 — While there is an increasing equality in terms of the likelihood that children from communities and families across the socioeconomic spectrum will be diagnosed with autism, a new study finds that such factors still influence the chance of an autism diagnosis, though to a much lesser extent than they did at the height of rising prevalence.

“As knowledge has spread about autism, information is now more evenly distributed across different kinds of communities,” said Peter S. Bearman, the Cole Professor of the Social Sciences at Columbia University and the Director of the Paul F. Lazarsfeld Center for the Social Sciences, who coauthored the study, which appears in the April issue of the American Sociological Review. “It is also easier to find someone who can diagnose autism, so we no longer see these huge differences in rates of diagnosis. However, it appears that poor kids living in poor neighborhoods still are not being diagnosed.”

The study examines birth and diagnostic records for all children born in California between 1992 and 2000 in conjunction with individual and community-level data such as parental wealth, parental education, and neighborhood property value. All children were followed from the time of birth until June 2006 to allow ample time for diagnosis. As the disorder became increasingly well-known, the average age of autism diagnosis fell from 5.9 among those children born in 1992 to 3.8 for those born in 2000.

“At the height of rising prevalence, which involved children born between 1992 and 1995, kids whose parents had fewer economic resources simply weren’t diagnosed as often as wealthier children— wealthier kids were 20 to 40% more likely than poorer children to be diagnosed,” said study coauthor Marissa D. King, an assistant professor of Organizational Behavior at Yale University’s School of Management “Among children born in 2000, however, parental wealth alone had no effect on the likelihood that a child would be diagnosed.”

Overall, of the 4,906,926 million children born in California between 1992 and 2000, 18,731 or .38% were diagnosed with autism. The prevalence of autism among the 1992 through 2000 California birth cohorts increased significantly, from 29 per 10,000 in 1992 to 49 per 10,000 in 2000.

“I think what has happened in California is that the ascertainment machinery—a combination of diffusion of information, awareness, conversations, and the capacity of physicians, teachers, nursery school providers, nurses, and so on—has become more established,” Bearman said. “And, as more and more people are diagnosed with autism and the disorder becomes more central to thinking about child development in everyday discourse, the information about who might have autism is more evenly distributed across the whole state no matter where people live. So, the differences across communities and by social class are less than they used to be.”

But, Bearman said, it is still the case that children from low-income families who live in poor neighborhoods are less likely to be diagnosed with autism. “We know that parents talking to each other about navigating the service system and talking to each other about how to understand developmental dynamics are really strongly associated with increased autism diagnoses,” Bearman said. “The guess is that in wealthier neighborhoods, there are more opportunities for parents to be talking to each other at parks, schools, and other focal points.”

According to the study, on average among children born between 1992 and 2000, a child from a poor family that lived in a more affluent neighborhood was close to 250% more likely than a child from an equally disadvantaged family living in a poorer neighborhood to be diagnosed with autism.

The study also found that when autism cases were split by severity, a striking pattern was revealed—less severe cases were disproportionately found in wealthier and more educated neighborhoods. Among kids born in 1992, the odds of children with less-severe symptoms being diagnosed was 90% higher if they lived in a wealthy neighborhood. By the end of the study, that percentage had decreased by half, to 45%.

“Less severe cases, the kids who are the highest functioning, can often slip underneath the diagnostic radar in less affluent communities where the diagnostic resources are not as established,” Bearman said. “If you’re less severe, you might not be diagnosed because you don’t seem to have a profound disability—so you’re just thought to be a weird kid.”

As for policy implications of the study, Bearman said it is very simple. “I think you would like to reduce health disparities,” he said. “So, in order to reduce the health disparity—or really the service disparity—we would need to allocate more resources to increase ascertainment to get children into treatment.”

While the study focuses on children from California, the authors expect somewhat more amplified socioeconomic effects on autism diagnoses in other parts of the United States. “Since California has a state-wide program dedicated to serving kids with developmental disorders, it is likely that the inequalities in autism diagnoses are greater in other states,” King said.