Voice of America Story on Autism

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Schools and Older HFA Students

Schools have a difficult time coping when HFA students reach adolescence. Chantal Lovell reports at the Redlands [CA] Daily Facts:

"Teachers in high school have been fostered to teach independence, but our kids just don't have those organizations skills," said Beth Burt, president of the Autism Society of America, Inland Empire. "A child can do all the work and then forget to turn it in."

The district does not have a classroom or program specifically dedicated to older, higher functioning students with autism, but offers support services based on individual need, said Cheryl Sjostrom, RUSD [Redlands Unified School District} director of special services.

"Special education is not placement," Sjostrom said. "It's supports and services so that a child can access the curriculum. When we start looking at those supports and services, it's so individualized based on individual needs."

She said the district's philosophy, which is based on research and expert advice, is to educate students in general education classrooms when possible and add support as needed. That can include therapy, an aide and other services.

Other area districts share that philosophy and educate in the same way, said East Valley Special Education Local Plan Area administrator Anita Ruesterholtz. Meeting the individual needs of the students is the way most local schools tackle special education because students with autism are very different from one another.

"The least restrictive environment is when they can access the general education curriculum in a general education program with supports and services," Sjostrom said. "From there, you start working into more restrictive (learning environments), if they're not able to do that."

Sjostrom said her department is in the process of visiting other districts to learn from their programs, but autism education for middle and high schoolers is hard to find.

"The school systems really aren't adapted to meet the needs of students with autism," Burt said. "This is kind of a new-age range and they haven't had the time to develop programs for them."

See a 2009 Washington Post article on a related topic.

TRICARE and Retirees

The Los Angeles Times reports on Zachary Berge, an ASD child facing a coverage gap:

A supplemental benefits program available under Tricare offers families of active-duty members as much as $36,000 a year each to cover the cost of the therapy and other autism treatments. But the Berges are not eligible for that program because Zach's father, Kenneth Berge, retired from the Air Force in 2006.

"I thought it was a fluke that it's not covered," said Dawn Bermge, a former college speech instructor whose full-time job now is to take care of Zach. "We believe with our military members serving like they have, this is something they would be covering."

There are nearly 8,800 dependents of retired military personnel who have been diagnosed with autism, according to 2007 Department of Defense figures.

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Tricare representatives told military families that it considers ABA an educational program, not a medical benefit. Because of this, ABA therapy falls under the supplemental benefits program offered by Tricare only to active-duty personnel.

See an earlier post on TRICARE.

Churches and Autism

Tocqueville wrote that religion is the first of America's political institutions. He also said that Americans take on many public problems through voluntary associations. It is appropriate, then, to look at the role of U.S. churches in the autism issue. The Kalamazoo Gazette reports on a Michigan church that holds vacation Bible school for kids on the spectrum.

This year is the first time Southridge is holding a vacation Bible school specifically for children with autism, but it’s not the only church that’s had the idea.

Willoughby said she has talked to people from a church in Florida and a church in Colorado who were planning to do the same thing this summer. An Internet search revealed that churches in Corpus Christi, Texas, and Bloomington, Ill., also have held vacation Bible schools for autistic kids.

A 2008 report by Religion News Service writer Adelle M. Banks illuminated the broader issue of how congregations throughout the country are dealing with people of all ages with special needs. Her report indicated that Christian educators were seeing an increased interest in workshops, books and other materials that help them adapt their Sunday school classrooms for those with autism, attention deficit hyperactivity disorder and other conditions.

But it also revealed that some churches are deciding that worship services are not appropriate settings for some special-needs children. A Catholic church in Bertha, Minn., obtained a restraining order against a teenager accused of urinating on a pew and pushing a parishioner. The boy’s mother found a church in a neighboring town that the entire family can attend, Banks reported.

In Kalamazoo, North Presbyterian Church is known for welcoming those with mental illness and developmental disabilities, both in its worship services and through a social and recreational Togetherness Group, which received an award in 2003 from Community Advocates for Persons with Developmental Disabilities.

Other churches — including Third Christian Reformed, Westwood CRC, Haven Reformed, Second Reformed and Pine Island Presbyterian — offer Friendship Groups that pair individuals who have cognitive disabilities with volunteers for worship, socializing and activities. Friendship Ministries, based in Grand Rapids and in Burlington, Ont., provides resources for these groups in more than 60 Protestant denominations and some Catholic churches.

See also items by the Autism Society and Autism Speaks.

Texas Legislation

The Texas Tribune reports:

During the last legislative session, State Sen. Eddie Lucio, D-Brownsville, introduced legislation to expand the availability of special education training to Texas teachers, influenced, in part, by the growing number of students with autism. The bill included a small stipend for participation to encourage additional training, but after passing unanimously in the Senate, it died in the House.

Now some lawmakers are exploring the idea of building charter schools for special ed students and integrating them into existing campuses. They’re looking, in particular, at a New York City charter school for autistic children that is located inside a public school. “I absolutely believe that a charter school system is viable for Texas,” says state Sen. Florence Shapiro, R-Plano. Another “ideal option,” Shapiro says, is putting autism charter schools on state university campuses, where they could draw on university money, staff and expertise.

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The quality of Texas special education programs for autistic students runs the gamut, and the number of autistic students in classrooms decreases as children get older, TEA data shows. Some mental health advocates speculate that the reason for that trend is that parents take their children out of public schools and seek education instead in a private or homeschool setting.

“A lot of parents just get frustrated, and they just don’t see the point in continuing. It’s a lose-lose for everybody,” says Colleen Horton, program officer at the Hogg Foundation for Mental Health.

One of the biggest frustrations for parents, Horton says, is that schools don’t adequately prepare students with autism to transition into adult programs and participate in the community. Districts are required by law to provide special education services for students until they are 22 years old, but that doesn’t mean they’re ready to enter the world. “We can teach them for 12 to 15 years, but if we are not preparing them for something after that, many end up sitting on the couch with nothing to do,” Horton says.

Ole Ivar Lovaas, RIP

The Los Angeles Times reports:

Ole Ivar Lovaas, a University of California-Los Angeles psychology professor who pioneered one of the standard treatments for autism, has died. He was 83.

He had been recovering from surgery for a broken hip and developed an infection, according to a family member. Lovaas died Monday at a hospital in Lancaster, north of Los Angeles. He had been diagnosed with Alzheimer's disease a few years ago.

Lovaas' 1987 paper, "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children," showed for the first time that intensive one-to-one therapy early in life could eliminate symptoms of the disorder in some cases.

He described some of his research subjects as having "recovered," a concept that remains controversial but appealed to parents and helped launch an industry that provides the treatment to the growing numbers of children being diagnosed.

"Before that (paper), people still felt that there was no hope once your child was diagnosed with autism," said Doreen Granpesheeh, one of his former graduate students who went on to open the Center for Autism Research and Treatment, a large therapy company.

An early interview with Lovaas:

Massachusetts Governor Signs Legislation

This week, Massachusetts Governor Deval Patrick signed mandate legislation. From his press release:

"I am proud that Massachusetts now has one of the most comprehensive autism coverage laws in the nation," said Governor Patrick. "This bill offers needed relief for individuals and families struggling to pay for the services they need."

"Parents have long been faced with the difficulty of getting necessary medical care for their autistic children covered by insurance companies. Studies have shown that by receiving services early, those diagnosed with an Autism Spectrum Disorder will need fewer services later in life," said Senate President Therese Murray. "This law will change existing insurance policy so that we will be able to provide early intervention care to more children with autism, teaching them to communicate and learn at an early age. The passage and signing of this legislation signals an increased understanding about autism and its treatment."

• Campaign website here.
• Video here.

On a related topic, the governor signed legislation concerning terminology. From another press release:

In keeping with the Patrick-Murray Administration's commitment to support the Commonwealth's most vulnerable populations, Governor Deval Patrick today signed into law a bill that promotes dignity for individuals with developmental disabilities by replacing the words "mental retardation" with "intellectual disabilities or disability" in the Massachusetts General Laws.

The legislation, "An Act Eliminating the Word 'Retardation' from the General Laws" (H4922), reflects the passionate work of advocates, particularly self-advocates with developmental disabilities, and follows last year's renaming of the Department of Developmental Services, which had previously been called the Department of Mental Retardation. A broad range of stakeholders believed that changing the name of the department was a key step in demonstrating respect for people with developmental disabilities and also better reflected the range of services and supports offered by the state.

Hearing on Autism and the Environment

ABC News reports:

Mary and Steve Moen fought for years to get their son Max, now 10, the help he needed to deal with the behavioral and social problems he exhibited as a child with autism.

They went for numerous evaluations and sought out some of the best specialists in the field, enduring sometimes year-long waits for consultations. Their persistence paid off; Max attended a special autism program to help him function better socially and control his behavior better, and now he attends a mainstream school and performs well academically, behaviorally and socially.

Still, the underlying cause of Max's autism remains a mystery -- a situation his parents hope to change.

Moen shared her son's story in front of the Senate Environment and Public Works Children's Health subcommittee today. The subcommittee met to get a status report on research into the links between environmental factors and developmental disorders like autism and attention-deficit hyperactivity disorder.

• Video of hearing here.
• Witness statements here.
• ABC story on GFCF diet:
  
  

Terminology

Should we write "autistic person" or "person with autism"? At The Washington Times, Jean Winegardner writes:

The theory behind person first language ("person with autism") is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my twitter followers which they preferred and the majority, mostly parents of children with autism, reported that they prefer the person first terminology.

Person first language is an easy philosophy to accept. It makes complete sense, and I find it to be a perfectly reasonable way of thought. However, I tend not to prefer it. The reasons for rejecting person first are more complicated, but, I believe, equally valid.

I use the adjective "autistic" for several reasons. I have taken my cues from many autistic adults who self-identify as autistic. For these individuals, autism is simply a part of them that cannot be separated from who they are. Autism is, in a way, a description of how their brains work, not something that has been added to their being. Without autism, they would not be the same person, therefore it is not something they have, but rather something they are.

Autistic adult and autism activist Jim Sinclair wrote a very clear, articulate essay about why he dislikes person first language. This essay lays out why he identifies as an autistic person, and his reasons are very similar to mine.

Lupron

The Palm Beach Sun-Sentinel reports:

A Maryland medical group has started treating autistic children in South Florida with shots of a drug used for chemical castration, a therapy widely panned by mainstream experts.

The group gives children the cancer drug Lupron to stop their bodies from making testosterone, saying the drug helps expel toxic mercury and quells aggressive or sexually explicit behavior by kids with excessive levels of the male hormone.

A Boca Raton mother who just put her 18-year-old son on the drug said it seems to help.

But numerous physicians, researchers and therapists insist there's no proof mercury causes autism, that Lupron removes mercury or that autistic kids have excessive testosterone. What's more, the drug carries a risk of bone damage, stunted growth and heart trouble, and can render children impotent.

These experts contend that Lupron, costing about $5,000 a month but seldom covered by insurance, is one of many treatments that cash in on the desperation of parents trying to cope with an incurable condition for which medicine has few good answers outside of painstaking behavioral therapy.

"Not only is there no scientific backing whatsoever for Lupron treatments, there are several major concerns for the children's health," said neurologist BethAnn McLaughlin, an adviser to the Dan Marino Foundation autism group in Weston and the mother of two developmentally disabled children.

• See a sidebar on controversial treatments.
• See a 2009 Chicago Tribune piece on lupron.

Divorce, Families, and Older People with ASD

An earlier post dealt with the "divorce myth," the notion that parents of autistic children are more likely than others to break up. Unfortunately, one study suggests, it becomes less of a myth as the children grow up. From the University of Wisconsin:

The parents of grown children with autism are more likely to divorce than couples with typically developing children, according to new data from a large longitudinal study of families of adolescents and adults with autism.

The study, published in the August issue of the Journal of Family Psychology by researchers from the University of Wisconsin-Madison's Waisman Center, paints a new picture of the prospects of long-term marital success for parents raising a child with autism.

The study is the first to track marital history of parents of adult children with autism. It reveals that, in contrast to previous assumptions, parents do not have a greater risk of divorce when their son or daughter with autism is young. However, as the child with autism grows into adolescence and adulthood, parents are more likely to divorce than are parents of typically developing children. Although findings reveal diminished prospects for a lasting marriage for parents raising a child with autism, the majority of marriages in this study survived.

The study compared the marital fates of 391 couples — the parents of adolescent and adult children with autism — to a sample drawn from another large longitudinal study, the National Survey of Midlife in the United States (MIDUS). The goal of the study was to document the rate and timing of divorce of parents of children with autism, explains Sigan Hartley, a UW-Madison assistant professor of human development and family studies and lead author of the report.

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There is a lifelong profile of challenging behaviors and symptoms associated with autism," Hartley notes. "Few developmental disabilities appear to be more taxing on parents and there is a great need for support services for families when the child is an adolescent and adult. Providing support for couples to help them work on their marriages is an obvious step. If we can get information and support to these families, we hope to be able to support lasting marriages."

The new study compares data from two large longitudinal studies, the Adolescents and Adults with Autism Study, directed by Marsha Mailick Seltzer, a UW-Madison professor of social work and director of the Waisman Center, and MIDUS, directed by UW-Madison psychology professor Carol Ryff. Both studies are funded by the U.S. National Institutes of Health.

Madison, Wisconsin

The New York Times reports:

Families with children with autism and developmental disabilities move from all over the country for the Madison schools. Kristi Jacobsen, whose son Jonathan has autism, moved from Omaha several years ago. She and her three children live here full time, while her husband, who has a financial business in Omaha, commutes back and forth.

“It’s a sacrifice,” Ms. Jacobsen said. “But Jonathan’s made such progress. They give him every opportunity to be part of the community.”

Lisa Pugh’s family moved from Wichita, Kan., for their daughter Erika, 11. A year and half ago Ms. Pugh took a job in Washington, but last month the family returned because, Ms. Pugh said, they missed Madison’s schools.

Build it and they will come. Nationally, about 12 percent of students are identified as disabled, but in Madison 17.5 percent are, according to John Harper, who oversees special education. Mr. Harper said that 88 percent of elementary students with disabilities were fully included in classes, along with 81 percent of middle school students and 63 percent of high school students. Most of the rest have a mix of general and special education classes; fewer than 5 percent are separate.

David Riley of the Urban Special Education Leadership Collaborative said Madison was one of the “big three” leaders in successfully implementing inclusion, along with the schools in Charlotte-Mecklenburg, N.C., and Clark County, Nev.

While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students.

Diagnosis Disparities

In Psychiatric Services (subscription required), David Mandell and colleagues look at autism diagnoses among children on Medicaid. Here is the abstract:

This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time. METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis and characteristics of children younger than ten years old with a diagnosis of autism (ICD-9 codes 299, 299.0x, or 299.8x). These data were linked to county-level education and health care variables. Linear regression with random effects for state and county was used to examine associations between these variables and age of diagnosis. RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months. Adjusted average age of diagnosis dropped 5.0 months for autistic disorder and 1.8 months for other spectrum disorders during the study period. Asian children were diagnosed earlier than children in other racial or ethnic groups, although these differences were much more pronounced for other spectrum disorders than for autistic disorder. Children eligible for Medicaid through the poverty category were diagnosed earlier, on average, than children who were eligible through disability, foster care, or other reasons, although this difference decreased over time. Children in large urban or rural counties were diagnosed later than children in small urban or suburban counties. CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children, although timeliness is improving over time. Analyses suggest that most of the observed variation is accounted for by child-level variables, rather than county-level resources or state policies.

In an earlier study, Mandell and colleagues found racial disparities:

This study estimated differences by ethnicity in the diagnoses assigned prior to the diagnosis of autism. In this sample of 406 Medicaid-eligible children, African-Americans were 2.6 times less likely than white children to receive an autism diagnosis on their first specialty care visit. Among children who did not receive an autism diagnosis on their first visit, ADHD was the most common diagnosis. African-American children were 5.1 times more likely than white children to receive a diagnosis of adjustment disorder than of ADHD, and 2.4 times more likely to receive a diagnosis of conduct disorder than of ADHD. Differences in diagnostic patterns by ethnicity suggest possible variations in parents’ descriptions of symptoms, clinician interpretations and expectations, or symptom presentation.