Autism and the DSM

Wired profiles the lead editor of DSM-IV and the fight over DSM-V:

Every so often Al Frances says something that seems to surprise even him. Just now, for instance, in the predawn darkness of his comfortable, rambling home in Carmel, California, he has broken off his exercise routine to declare that “there is no definition of a mental disorder. It’s bullshit. I mean, you just can’t define it.” Then an odd, reflective look crosses his face, as if he’s taking in the strangeness of this scene: Allen Frances, lead editor of the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (universally known as the DSM-IV), the guy who wrote the book on mental illness, confessing that “these concepts are virtually impossible to define precisely with bright lines at the boundaries.” For the first time in two days, the conversation comes to an awkward halt.

...

Frances, who claims he doesn’t care about the royalties (which amount, he says, to just 10 grand a year), also claims not to mind if the APA cites his faults. He just wishes they’d go after the right ones—the serious errors in the DSM-IV. “We made mistakes that had terrible consequences,” he says. Diagnoses of autism, attention-deficit hyperactivity disorder, and bipolar disorder skyrocketed, and Frances thinks his manual inadvertently facilitated these epidemics—and, in the bargain, fostered an increasing tendency to chalk up life’s difficulties to mental illness and then treat them with psychiatric drugs.

The insurgency against the DSM-5 (the APA has decided to shed the Roman numerals) has now spread far beyond just Allen Frances. Psychiatrists at the top of their specialties, clinicians at prominent hospitals, and even some contributors to the new edition have expressed deep reservations about it. Dissidents complain that the revision process is in disarray and that the preliminary results, made public for the first time in February 2010, are filled with potential clinical and public relations nightmares. Although most of the dissenters are squeamish about making their concerns public—especially because of a surprisingly restrictive nondisclosure agreement that all insiders were required to sign—they are becoming increasingly restive, and some are beginning to agree with Frances that public pressure may be the only way to derail a train that he fears will “take psychiatry off a cliff.”

The article contains a chart on how the definition of autism has evolved (though the term "mental illness" is inapt):

(click for larger image)

The Daniel Jordan Fiddle Foundation

KABC-TV in Los Angeles reports on the Daniel Jordan Fiddle Foundation, which helps adults on the spectrum:

California Insurance Law on Pre-Existing Conditions

When the federal health law barred insurers from denying coverage to people with pre-existing conditions, some health insurers stopped writing child-only policies. The San Francisco Chronicle reports on a California law that takes effect on Saturday:

The new state law, authored by Assemblyman Mike Feuer, D-Los Angeles, and signed into law by Gov. Arnold Schwarzenegger on Sept. 30, bars insurers that refuse to sell policies exclusively for children from the broader individual market for five years. It also limits the amount insurers can charge for covering children with serious health conditions to no more than twice what they would charge healthier children.

...

Deborah Gustlin of Morgan Hill feels as if she finally has real health insurance for her 12-year-old son, Benjamin, who has Asperger's syndrome, a form of autism.

After an insurer rejected her son for coverage several years ago, Gustlin chose not to disclose his condition on a subsequent application - a risky move considering that his coverage could have been retroactively canceled if the insurer had discovered she lied about his pre-existing condition.

But Gustlin felt desperate. "I needed insurance in case he got sick or broke his arm," said Gustlin, a self-employed mother of two who runs an art studio.

Over the past four years since he was accepted for coverage, Gustlin has paid for all treatment related to his Asperger's on her own, a cost of more than $20,000.

Since the new federal provision went into effect, Gustlin had to take her son to the hospital for a change in his Asperger's medication. For the first time, she said, her insurer covered the bill.

Asperger and the DSM

From National Public Radio:

In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this," Frances says.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, is the official list of all the mental disorders doctors can use to diagnose mental illness.

"At that point I did an 'oops,' " he says. "This is a complete misunderstanding. It was distressing. Quite distressing."

Kristina Chew responds:

While I do think Dr. Frances has a point about how the DSM criteria can be linked to changes in the rates at which a diagnosis is given, I really think it is inaccurate and, if I may say so, more than a bit insensitive to suggest that anyone seeks a diagnosis of Asperger's for a child with the sole desire to get a child 'into a special program.' As my own son Charlie is on the severer end of the autism spectrum, his diagnosis and the extent of his needs have rarely been in question. But too many of my friends who have a child with Asperger's or with PDD-NOS or 'mild' autism have had to struggle mightily and persistently to get their child the education and services he or she needs simply to get through a school day in one piece.

Autism and Community Service

NBC reports on students at the College of St. Rose who volunteer to work with kids on the spectrum:



The Marion [Ohio] Star reports:

Cataya Thornton, a behavioral technician who works with an autistic student at Elgin Junior High School, was originally seeking a few students who would be willing to interact with the student.

She started out with two in 2009. By the end of the school year, that had turned into 42. When the school opened it up to volunteers this year, more than 100 students expressed an interest.

Thirty-six students are engaged in the Peer Proximity Program, meant to help Caden Ruth gain academic and social skills. They were chosen after the school turned it into a competition, requiring students who wanted to take part to submit an essay, and received 36 essays in response.

"We were just totally overwhelmed at how many stepped up," said Sherry Ruth, Caden's mom, who said she expected one or two students. "As a parent, I think it's fantastic."

The Corporation for National and Community Service has a website -- http://www.serve.gov -- enabling people to identify service opportunities in their interest and geographic area. The keyword "autism" yields many hits.

Autism in China, Continued

China Daily reports on the Chinese government's inadequate response to autism, citing the example of Yao Yiyi and his mother Liu:

According to the China Disabled Persons' Federation, more than 90 percent of people with autism face difficulties in going to public schools or getting jobs.

China's first case of autism, a disorder characterized by impaired social interaction and communication, as well as restricted and repetitive behavior, was reported in 1983. [emphasis added]

Since then, the autistic population has swelled to about 4 million nationwide. Although there is no official data on the number of child sufferers, a 2004 study by the Beijing Rehabilitation Association for Autistic Children suggested it could be in the region of 450,000.

Yao's parents spend 2,000 yuan ($300) a month for his tuition at Anhua Intelligence Training School, the only State-funded vocational center for children with learning difficulties in the capital's Chaoyang district. They also pay 1,300 yuan a month to rent an apartment near the school.

Money is tight, especially as Liu is on long-term leave from her army unit in Baicheng, Heilongjiang province, and her husband is studying for a PhD at Tsinghua University.

"Financial difficulties can be conquered. We're more worried about what is going to happen to our son after our deaths," explained Liu, 34. "Sometimes we hope he will never grow up or that he will die before us."

Autism is detectable very early in a child's development, yet Liu said doctors in Baicheng took more than three years to confirm Yao's diagnosis, causing serious delays to his treatment.

Autism and Airport Security

Autism overlaps with a wide array of public policy issues, including many that one would not initially expect. Take airport security, for example. Lisa Black writes at The Chicago Tribune:

The TSA has worked with 70 disability-related groups to develop its screening techniques for people with physical and hidden conditions, such as autism, said James Fotenos, agency spokesman. Family members or traveling companions should notify security officers of any disability that may call for special assistance or privacy, he said.

...

Travelers with autism or other hidden disabilities face different challenges.

Experts advise families to arrive at the airport early and inform the TSA agents about a disability. Parents can prepare a child by showing them pictures of the terminal in advance and by bringing along comforting foods or activities.

"Oftentimes, children with autism become quite anxious when faced with new situations, especially around the holiday time. There are already things that are different," said Brian Freedman, clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore.

Sometimes things do not go well. Consider an incident a few weeks ago, via WVEC (Hampton Roads, VA):

Problems predated the recent enhanced security procedures. See a post from January 2010.

IEP Quality

In the Journal of Autism and Developmental Disorders, Lisa Ruble and colleagues discuss a new tool for measuring the quality of IEPs:

Probably the most important finding of the study was that the IEPs of students with autism do not meet the requirements/recommendations of IDEA and NRC indicators and are sorely in need of improvement. Measurability of IEP objectives appeared to be one of the greatest areas of need. In particular, specified criteria for goal measurement and success were lacking. Further, most objectives either did not accurately reflect state standards or, when they did, tended to

be adopted without individualization to the child. Although state academic content standards should be considered in developing plans that allow access to the general curriculum, such standards alone are likely insufficient to become an individual student’s objective without modification. Instead, for standards requiring modification or accommodation, teams should delineate measurable objectives that lead to the standards, so it is possible to monitor the student’s progress towards the broader state academic standards.

Unions v. Insurance Mandate

Supporters of an insurance mandate in Michigan will resume their fight in 2011, but unions stand in their way. The Flint Journal reports:

But divisions remain, even between usual allies, such as Senate Democrats and the UAW.

The measure was opposed by the Michigan AFL-CIO and the UAW, whose leaders said they want to be able to bargain health care coverage options.

“There are things that sound like the right thing to do because of the social reasons, but when you pick it apart, we have legislators trying to dictate to us how we are going to negotiate our agreements,” said Norwood Jewell, director of UAW Region 1C.

“We are not cold to the fact that there is an issue out there with autism, but we have to be responsible about it. We have to figure out a better way than a legislative mandate that is going cost more than people can afford.

“With health care costs going up and people’s wages going down, we need to take more time to look at other options,” he said.

Education, Scarcity, and Philanthropy

Cutbacks in Detroit schools are hitting kids on the spectrum, the Detroit Free Press reports:

Meanwhile, some classes of autistic children -- at schools including Detroit School of Arts West at Langston Hughes and Durfee and Phoenix elementary schools -- were suddenly transferred midsemester because of overcrowding and inadequate planning that left some schools with too many autistic students and other schools with too few.

One parent, Steven Thomas, said a cab showed up at his home in October to take his 12-year-old autistic son, Steven, to new teachers and classmates at Marquette Elementary -- 25 miles east of his current school, Hughes.

Like many children with autism, sudden changes to Steven's routine can set him back. "Autistic children are so vulnerable, why would they do this?" his father asked. Thomas said that after complaining, he was able to keep his son at Hughes.

Bobb said school officials apparently failed to communicate to parents the decision to transfer some autistic students. "These parents' concerns are totally legit," [district official Robert] Bobb said.

At San Jose Inside, Pete Campbell has a suggestion for billionaires who want to give away money:

[P] provide funding for one-on-one tutorial services for kids on the Autism spectrum. Our educational system is woefully unequipped to meet the needs of kids (and families) dealing with this growing epidemic. Autism is this generation’s polio. It will take an incredible amount of money and other resources to meet the challenge. Currently, only the wealthiest among us are able to provide for the care necessary to “mainstream” some of these children.

A comment on the post suggests that an even more effective use of the money would be to support training instead of direct services. This approach makes great sense in the case of autism, given the shortage of highly trained therapists.

Autism and Divorce

An article in The Huffington Post begins:

The divorce rate of parents with an autistic child is said to be over 80%. If there's any validity to this statistic my guess is, in addition to the stress and financial strain, the legal hoops one must jump through to get ones child basic services with the Board of Education, the Board of Public Transportation, insurance companies, the lawyers, the hearings, the paper work and the sheer bureaucracy of advocating for your child must be a factor. It is the workload equivalent to running a small business if not more. When you add the fact many autistic children have disruptive sleep patterns and eating habits causing further complications to a family already struggling to cope, you have a situation that will test the strength of any marriage, no matter how solid.

This story is one case where the online comments section is actually useful. Three readers have already pointed out that the 80-percent figure is bogus. See an earlier post on a study from the Kennedy Krieger Institute. As another post mentioned, however, parents of adults with autism do seem to have a higher divorce rate.

Autism Late in Life

A study from the Netherlands:

It is highly likely that ASD is underdiagnosed in older people. The paucity of literature on the subject suggests that lack of awareness of ASD among mental health professionals working with elderly people may be an important factor. Our hypothesis is further substantiated by our three case series, which showed that the diagnosis of ASD was most likely delayed by a lack of knowledge of and attention to the signs of the disorder. An adequate screening for and proper diagnosis of ASD in elderly patients is important for various reasons. A diagnosis of ASD may offer the patient and his/her family/caregivers some relief because it not only explains the current problems, but also puts the “odd” lifelong behavior into perspective. Educating and coaching the patient and his/her family then is an important therapeutic step – and should be extended to the (nursing) staff if patients live in residential care facilities.

Also see IACC draft strategic plan language on adults with autism.

A Video

The ABLE Act

Last week, the Autism Society of America reported:

The effort to add the ABLE [Achieving a Better Life Experience] Act to the Middle Class Tax Relief Act, legislation that was considered during these last few weeks of the year, was not successful for reasons unrelated to the merits of the proposal. As a result, the ABLE Act was not included in the final tax bill that was passed by both the House and Senate this week. This outcome is disappointing; however the important efforts of advocates have made a difference. The bill was moved to a point in the process in which key members of the congressional leadership and the president’s administration understood that there is tremendous support among advocates across the country for the ABLE Act, which would give individuals with disabilities and their families the ability to save for their child’s future. The Autism Society and a group of 40 national disability organizations that are part of the effort to enact the ABLE legislation will act early and aggressively in the next Congressional session to urge Congress to take up the legislation again. Thank you for your support.

ASA explained:

The ABLE Act would enable families to establish a savings account for specified education, medical and community-based services, including housing, transportation, employment training and supports for their child without disqualifying that child from receipt of funds from entitlement programs which are vital in ensuring their quality of life. ... This legislation would greatly benefit many people affected by autism. The Autism Society recognizes the importance of lifespan planning and sees the Disability Savings Accounts that this bill would create as one measure to help families with adults on the spectrum. Robert Casey (D-PA) sponsored S 493, the Senate version. Ander Crenshaw (R-FL) sponsored HR 1205, the House version.

Crenshaw sponsored an earlier version of the measure in the 110th Congress. In July, he wrote in The Washington Times:

The average cost of raising a child with a significant medical disability is more than $1 million over the course of the child's lifetime. Continuing education, transportation, housing and medical care make up some of the predictable costs on that staggering bill.

ABLE accounts would relieve some of that burden by allowing parents with disabled children or family members of disabled individuals to invest through a tax-deferred savings account that could be drawn from for these future expenses. No longer would parents have to stand aside and watch as others use IRS-sanctioned tools like 529 education savings accounts to lay the groundwork for a brighter future. They would be able to do so for their children as well.

Creating an ABLE account would be as simple as opening an account at the local bank. Anyone currently receiving Supplemental Security Income (SSI) benefits would be eligible, and qualified expenses would include education and transportation expenses, medical and dental care, and employment and training support.

Anyone would be allowed to contribute to an ABLE account, and rollovers would be allowed without penalty; however, contributions to these accounts would be capped at $500,000. Under the proposal, the principal in the account would accrue interest-tax-free during the life of the beneficiary. When distributions were made to the beneficiary for qualified expenses, the distributions would be excluded from the gross income of the beneficiary.

Combating Autism Act Reauthorization

In one of his last acts in the Senate, Christopher Dodd (D-CT) has introduced a bill reauthorizing the Combating Autism Act. (Another member must reintroduce it during the next Congress.)

• See Autism Speaks blog post.
• See Autism Votes writeup.
• See earlier post on the CAA Reauthorization Coalition

From Dodd's remarks on December 17:

Mr. President, I rise today to introduce the Combating Autism Act, CAA, Reauthorization. Six years ago, my former colleague Senator Rick Santorum and I introduced the original CAA to expand Federal investment for autism research, services, treatment, and awareness efforts. The bill was signed into law by President Bush following a nearly unanimous Congressional vote. The original CAA made great strides in addressing the growing public health problem. However, our work remains unfinished and essential programs are set to expire in 2011. For this reason, joined by my colleague Senator Robert Menendez, I am introducing a reauthorization bill to strengthen the existing federal, state, and local efforts.

Autism is one form of Autism Spectrum Disorder, ASD, a group of developmental disabilities caused by atypical brain development. It is a severe neurological disorder that affects language, cognition, emotional development, and the ability to relate and interact with others. Current estimates suggest that over 1 million Americans suffer from some form of autism.

Individuals with ASD tend to have challenges and difficulties with social and communication skills. Many people with ASD also have unique ways of learning, paying attention, or reacting to different sensations. ASD begins during early childhood and lasts throughout a person's life. As the name ``autism spectrum disorder'' implies, ASD covers a continuum of behaviors and abilities.

Autism is a profound condition that can have a devastating effect on children and their families. We as a nation must devote significantly increased resources to finding answers to the many questions surrounding autism. Families struggling to raise a child with autism deserve our support, and they deserve answers. The legislation we are working to reauthorize will help us continue the journey towards a better understanding of autism and better supporting those living with this difficult condition.

The original CAA represented the largest Federal investment of funding and programs for children and families with autism . The law expanded Federal investment for autism research through NIH; services, diagnosis and treatment through HRSA; and surveillance and awareness efforts through the CDC. As a result of these efforts, we made significant advances in the understanding of autism. For example, we identified several autism susceptibility genes that are leading to drug discovery and earlier detection of infants at risk for ASD. Our Nation's researchers are now investigating the links between environmental exposures and autism . We improved methods for autism screening and recommendation for universal autism screening at well baby check-ups. We even developed effective early intervention methods for toddlers with autism .

Unfortunately, major provisions of CAA are set to sunset in 2011. Although some Federal efforts on autism would undoubtedly continue without a reauthorization, the autism community would experience a disastrous loss of momentum. Autism is the fastest growing developmental disability in the Nation. For unknown reasons, the number of children diagnosed with autism has skyrocketed in recent years, from one in 10,000 children born 15 years ago to approximately one in 110 children born today. Although it is more common than Down syndrome, childhood cancer, and cystic fibrosis, autism research currently receives less funding than these other childhood diseases.

Our reauthorization bill would ensure that these critical programs continue, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee, IACC. We are building upon the success of the original CAA by making additional investments in an array of service related activities. We create a one-time, single year planning and multiyear service provision demonstration grant programs to States, public, or private nonprofit entities. We establish a national technical assistance center to gather and disseminate information on evidence-based treatments, interventions, and services; and, we authorize multiyear grants to provide interdisciplinary training, continuing education, technical assistance, and information to improve services rendered to individuals with ASD and their families.

Finally, we create a new National Institute of Autism Spectrum Disorders within NIH, to consolidate CCA funding and accelerate research focused on prevention, treatment, services, and cures. A cross-agency institute with an aggressive, coordinated, and targeted research agenda aimed at improving the lives of individuals with autism is needed to address the challenges posed by a complex condition that involves many areas of science and services research. It also will provide our research community with a more predictable and accountable budget environment for disorder affecting individuals on this scale.

Over the course of my career I have had the opportunity to meet with several families who are affected by autism. The parents of children with this disorder are some of the most dedicated and perseverant I have ever worked with. They do more than simply rise to the challenge they have been presented with. They stand up and fight. They fight for themselves, they fight for their community, and they fight for generations to come, but most of all, they fight for their children. I want to thank these families and their children for sharing their stories and their strength with me. Their stories, anecdotes and struggles give a face to the people all across the country whose lives are touched by this important research, and hearing about them help us to do our jobs better. The CAA would be nothing without them.

Last but certainly not least, I would like to take this opportunity to thank the disability, and more specifically, the autism community and advocacy organizations who have worked tirelessly on this bill. The magnitude and importance of their work on this legislation and other related initiatives will never be properly recognized. There are few advocacy groups that pursue their goals and priorities with as much fervor and fortitude as this community. They have an incredibly challenging but critically important job, and I would like to thank them for their hard work and support throughout the years. None of this progress could have been made without them.

It is my hope that introducing this reauthorization bill will build momentum for the efforts of my colleagues during the 112th Congress, and I would like to thank Senator Menendez for his willingness to lead the charge into next Congress. Senator Menendez has been a great partner on so many issues over the years and I am happy that he will be here next Congress to lead the efforts on this reauthorization.

The CAA was a bipartisan, bicameral bill. That must continue next Congress. I hope that my colleagues will support this important legislation. We must continue to build upon these successes and ensure more communities are better equipped to address this complex public health issue.

Autism Puzzles

Susan Nielsen writes at The Oregonian:

Every few days, a new story pops up on Google News about a novel treatment for autism. Or an unexpected correlation, like living near a freeway. Or a new study that contradicts the last three autism studies.

This is maddening, even for people like me who lack a direct family connection to this increasingly common brain disorder. As 2011 draws near, the questions surrounding autism are still more plentiful than the answers -- and the field remains a study in money troubles, personal struggles and late-night Internet searches.

"It is quite the roller coaster," said Genevieve Athens, who has an autistic daughter and works as executive director of the Autism Society of Oregon. "When you have a kid with autism, you spend your whole life wondering what you should have done."

...

Despite the frustrations, reasons for optimism abound. Funding for autism research continues to grow. More scientists are pooling their expertise across specialties. In Oregon, a new statewide autism commission is intended to improve coordination among researchers, educators, therapists, parents and other players.

Also, more people in Oregon and nationally are framing autism as a long-term health challenge rather than a children's issue. This longer view provides an invaluable perspective for legislators and others who make funding decisions: The cost of living with autism, in health care and lost productivity, averages $3.2 million per person, according to medical estimates used by the CDC.

By comparison, early intervention -- even the intensive kind -- is a lot cheaper.

Autism in Scotland

The Scotsman reports:

A BILL aimed at improving services for people with autism has been rejected by a Holyrood committee.

The Autism (Scotland) Bill was introduced earlier this year by Hugh O'Donnell, a Liberal Democrat MSP for Central Scotland who used to be a support worker for people with autism.

A key requirement of his bill was that ministers would have to publish an "autism strategy" aimed at improving the current entitlement of people with the condition.

It stipulated that NHS bodies and local authorities should "have regard to" any guidance issued in the strategy.

However, the education committee published a report yesterday expressing concerns over the ability of the bill to deliver the required improvements, saying the proposed obligations were not "robust enough".

O'Donnell earlier wrote:

At present 50,000 Scots – that’s one in every hundred – lives on the autism spectrum, known as Autism Spectrum Disorder, or ASD, and has undergone many of the experiences I describe. But perhaps the worst of these is the crushing sense of invisibility. However, it categorically does not have to be like this. Some people with autism require a lifetime of care but many on the “spectrum” are able to study, work and take part in the community; they just need help and support at certain points.

That’s why I have proposed the Autism Bill (Scotland). The bill will make people with autism visible, especially to those agencies that should be helping them. Currently those expected to help, such as local authorities, health, welfare and education services often fail to do so, because they don’t recognise autism, or understand its impact.

People with autism can have very good experiences. In Scotland we have some excellent examples of support and care. Sadly, they are not widespread and people with autism and their families and carers are caught in a “postcode lottery” with some areas of the country providing no support at all. Of the 50,000 Scottish people with autism, only 7,500 are known to local authorities. With the bill in place, the Scottish Government will be legally obliged to produce a strategy for autism services throughout the country which all the agencies involved in identifying and caring for people with autism must take account of.

...

The bill will make 50,000 Scots with autism visible. But there is no question of this visibility negatively impacting upon other groups. Rather, it will ensure funds are spent wisely and to best effect. Autism is not a learning difficulty, nor is it a mental illness. But at present autism is often misdiagnosed as these conditions, with catastrophic results and expensive, unnecessary and ineffective treatment. Right now at least one in three adults with autism is experiencing severe mental health difficulties due to lack of support and incorrect diagnosis.

...

Finally¸ the money question. Implementing the bill would not necessarily be more expensive. Central to the Autism Bill is the achievable aim that professionals become more effective and efficient, not through expensive training but rather through better sharing of, and access to, existing training, research and information. There are areas of Scotland where good practice exists. By sharing this expertise nationally, we will see the creation of a joined up approach that helps give people with autism the right kind of support, when they need it.

According to the National Audit Office, if local authorities identify and support just 4% of adults with Asperger syndrome, a form of autism where individuals are of average or above average intelligence, services will become cost-neutral over time. The more people who are identified and supported, the greater the savings that can be made. But instead Scotland loses £2.3 billion a year due to ineffectual support for people with autism.

Legislatures and Autism

The National Conference of State Legislatures has an autism legislation database. It tracks autism legislation from the 2008 session to present, and enables users to Search measures by state, topic, status, primary sponsor, bill number or keyword.

NCSL's Jennifer Saunders writes:

The cost of providing autism services can be significant.

Last year, the Virginia Joint Legislative Audit and Review Commission estimated that more than 11,000 people with autism received assistance—including services in schools under the Individuals with Disabilities Education Act, Medicaid waivers and vocational rehabilitation programs—at a cost of more than $84 million.

Some states have had difficulty keeping pace with the need for special education, especially in rural areas. States that do provide those special education services spend about $12,000 more per student per year, according to the U.S. Government Accountability Office.

Ultimately, lawmakers must decide how much responsibility state government has to pay for the care for people with autism and how much lies with families, schools, health insurance providers and others. Legislators also must determine which programs and resources offer the best use of limited state funds. Court decisions could require states to provide certain services, such as Medicaid’s requirements to cover “medically necessary” treatment for children or federal special education requirements.

Delaying services, however, can also cost. That’s why some lawmakers back early intervention that can lessen the needs—and costs—down the road, both for parents and the state.

“We need resources in place now, not 10 years from now,” says [Louisiana Representative] Patrick Williams. “Our medical community, educational community and local-state-federal governments need to understand the effect this is having on our community. We have to work together to combat this disorder.”

Early treatment will reduce the need for school-funded special education services and long-term support such as job training, Medicaid and adult day care.

“With treatment, 47 percent [of children with autism] will recover typical function and another 40 percent will achieve significant improvement,” says Representative Kathy Angerer of Michigan.

But “without early diagnosis and treatment, the average cost to the state over the life of a child with autism is more than $2 million,” she says.

AP reports:

A bill to mandate insurance coverage for Autism Spectrum Disorders (ASD) took another step forward Wednesday, as the joint Judiciary Committee sent the bill on to the full Legislature with a recommendation to pass it.

The bill will be introduced sometime during the 2011 session, which begins Jan. 12.

"We're excited that this got through today without any apparent opposition," said Delegate Barbara Evans Fleischauer, who cochairs the subcommittee that brought the bill forward. The full committee passed it on voice vote, with no nays registered.

Committee counsel Rita Pauley said the bill places ASD coverage into the state mental health statute. Other states have tried this, and it puts them on firmer footing looking ahead to federally mandated health care exchanges in 2014.

The bill requires the Public Employees Insurance Agency (PEIA) and all other group insurance providers operating in the state to cover ASD diagnosis and treatment.

It allows for necessary cost-containment measures along with annual lifetime and annual coverage caps, as long as they're not in conflict with the federal Affordable Care Act.

Autism and Freeways

The abstract of a new study:

Background: Little is known about environmental causes and contributing factors for autism. Basic science and epidemiological research suggest that oxidative stress and inflammation may play a role in disease development. Traffic-related air pollution, a common exposure with established effects on these pathways, contains substances found to have adverse prenatal effects.

Objectives: To examine the association between autism and residence proximity, during pregnancy and near the time of delivery, to freeways and major roadways as a surrogate for air pollution exposure.

Methods: Data were from 304 autism cases and 259 typically developing controls enrolled in the Childhood Autism Risks from Genetics and the Environment (CHARGE) Study. The mother's address recorded on the birth certificate and trimester specific addresses derived from a residential history obtained by questionnaire were geo-coded and measures of distance to freeways and major roads were calculated using ArcGIS software. Logistic regression models compared residential proximity to freeways and major roads for autism cases and typically developing controls.

Results: Adjusting for sociodemographic factors and maternal smoking, maternal residence at the time of delivery was more likely be near a freeway (≤309 meters) for cases, as compared to controls (odds ratio (OR), 1.86, 95% confidence interval (CI) 1.04-3.45). Autism was also associated with residential proximity to a freeway during the third trimester (OR, 2.22, CI, 1.16-4.42). After adjustment for socio-economic and demographic characteristics, these associations were unchanged. Living near other major roads at birth was not associated with autism.

Conclusions: Living near a freeway was associated with autism. Examination of associations with measured air pollutants is needed.

Special Ed in NYC

The NY Daily News reports:

The city Department of Education spent $140 million last year on private school tuition for more than 3,000 special-education pupils - most of them from the city's wealthiest neighborhoods.

Such tuition payments for children with dyslexia, attention deficit hyperactivity disorder and autism have increased fourfold since 2005, school officials say, and the cost could approach $200 million by next year.

Taxpayers support up to 80% of pupils at some private schools, where headmasters pull down huge salaries.

Meanwhile, children of low-income and working-class parents remain stuck in underfunded and sometimes chaotic special-education programs in regular public schools.

In August, The Wall Street Journal reported:

Families in the most affluent New York City school districts, including the Upper East and Upper West sides, file more claims than other parts of the city seeking reimbursement of their children's private-school tuition, according to Department of Education data.

The department last year spent $116 million in tuition and legal expenses to cover special-education students whose parents sued the DOE alleging that their public-school options were not appropriate. The number is more than double three years ago, and the costs are expected to continue to rise.

Parents have been helped by a series of U.S. Supreme Court decisions that strengthened their legal position to sue school districts. The most recent case was last summer.

"No one begrudges parents the right to send their children to private school," said Michael Best, general counsel at the DOE. "But this system was not intended as a way for private school parents to get the taxpayers to fund their children's tuition."

Parents, for example, are supposed to give the DOE an opportunity to provide the schooling before they go on to a private school and seek reimbursement. But in New York City, about half the claims are ones in which "the kid never went to public school," said Mr. Best.

IACC Draft, Another Take

From the draft IACC strategic plan (click for full-size image) For the previous draft, see post from November 20.

Special Ed in GA

The Atlanta Journal-Constitution reports:

Georgia's Department of Education is pouring millions into a program for the most emotionally disturbed students, but there is little evidence the special attention is helping, according to a state audit.

The state spent $64 million last year on the Georgia Network for Educational and Therapeutic Support, a special education program that serves students age 3-21 who have severe emotional or behavioral problems. Across the state, the program's 24 branches offer instruction in special classrooms at select schools or at off-site locations.

In a new report, state auditors raise concerns about the way the Department of Education is running the program. They say more needs to be done to track how these students – about 5,500 statewide – are progressing academically. And they want more accountability over how taxpayer money is spent on the 40-year-old program.

State education officials say the program is monitored in several ways and point out that federal and state laws as well as testing regulations apply to all special needs students, including those in the program. The branches are also overseen by local agencies, which help set the budgets and staffing.

“The program has made great strides in serving these students academically,” said Debbie Gay, who oversees the program for the Department of Education. “The highest priority is to help these kids reach graduation, to keep them in school and to provide that level of therapeutic support that allows them access to education.”

Among the audit’s findings:

• Students in the program had lower graduation rates and were less likely to go on to post-secondary education compared to the overall population of students with disabilities. Ten percent of high school students served by the program in 2004-05 graduated with a regular diploma by 2009.

• Auditors anticipated test results from this hard-to-teach population would be lower than the general population. They said, however, it is difficult to put scores into context, since the state didn’t collect test data from the program until 2009-2010. Their own research for test scores for 2008-2009 found that students in the program scored lower on state standardized tests in every subject compared to the overall population of students with disabilities.

• Several sites did not have psychologists and social workers, despite being allocated state funds for these positions. Ten program directors earned more than $100,000 a year, though the state provides only $50,336 for that position.

Autism in Hawaii

The Honolulu Star-Advertiser reports:

Through the last decade, the number of public school students with autism has doubled to more than 1,200 even as the total number of special-needs students has dropped.

And some parents say that growth is outpacing increases in services.

Those frustrations can be seen in due-process claims parents file when they disagree with the services offered for their child.

Last school year, 38 percent of the 148 requests for due process statewide were filed on behalf of children with autism, who make up 6 percent of the public schools' special-education population.

...

The department could not comment on specific cases. But officials did say that schools are many times doing their best, and sometimes parents can make unreasonable requests, call for therapies that are untested or get misinformation from others about what schools have to offer.

Education officials noted that the Individuals with Disabilities Education Act mandates a free appropriate public education but does not mandate the best education.

The department did say annual spending on autism is considerable.

In 2008-09 the department spent $22 million on its autism programs alone. Additional funds were also spent on autistic students through other programs.

By comparison, students with a "specific learning disability" make up the largest percentage of special-needs youth, numbering about 8,000 last year. But only 17 due-process requests were filed for the group in 2009-10.

Idaho Cuts Services for Adults on the Spectrum

The Magic Valley [Idaho] Times-News reports on autistic Idaho adults having to choose between services because of Medicaid cuts:

Eric currently receives two types of service through Medicaid: psychosocial rehabilitation and developmental therapy. Developmental technicians like Voss help clients with life skills, like balancing checkbooks and housecleaning, plus physical issues, like coordination and how to handle sensory overload. As part of DT, Eric volunteers at Parke View Care and Rehabilitation, which helps him socialize and gives him responsibilities outside of the home.

Psychosocial rehabilitation, or PSR, workers help clients with social skills and address emotional issues, like dealing with frustration and anger. As Eric explained, “fitting in more with society.”

Eric meets with his developmental technician for 10 hours every week and his PSR worker five hours per week.

For DT, Health andWelfare spokeswoman Emily Simnitt said, Medicaid reimburses providers at about $20 per hour, although rates depend on whether therapy is individual or in a group. Medicaid reimburses providers $45.40 for an hour of PSR.

Temporary rules, designed to help Medicaid reduce costs, force Eric to choose between the two services. The rules are set to expire in July, the end of the 2011 fiscal year, although the cuts might be extended this legislative session.

...

Not everyone agrees that both services are necessary — including some service providers themselves.

The Idaho Legislature directed the Idaho Division of Medicaid to consult Medicaid service providers about where to find savings, Wilkinson said. In a survey, many respondents were critical of PSR and DT services, calling the program inefficient and suggesting more oversight.

“Someone who has been on Psycho-social Rehabilitation for 10 years with the same goals should be closed to Psycho-social Rehabilitation,” one anonymous survey respondent wrote. “Goals should be realistic, time specific and re-evaluated and considered before continuing to authorize the service with unlimited hours where a Psycho-social Rehabilitation worker just hangs out with them as their friend.”

Other criticisms: Developmental technicians are undereducated, service agencies profit too much, and PSR and DT services overlap. Some providers questioned how much adult clients benefit from the services, calling the two glorified day care. “(Developmental therapy) is a waste of money because by that time they’ve either learned what they need to or not,” one Medicaid provider wrote. “If not, they are not likely to.”

That’s not the case, insist Eric Forth and his family. Since getting both PSR and DT services about three years ago, Eric’s behavior has improved, Mike Forth said. Eric gave an example of a recent encounter while volunteering with a woman who had brain damage. When Eric pointed out she was breaking the rules of the game they were playing, the woman began cursing at him. He spoke to her calmly and knew not to take the incident personally, Eric said.

If that had happened three years ago, “I probably would have hit her,” he said.

Autism in Tennessee Schools

The Tennessean reports:

Tennessee does not require teacher training on children with autism, nor does it track whether any training that schools do offer is effective, a recent state study noted.

• Tennessee Comptroller's autism report

But many say the state should be doing both.

"Unfortunately, there are teachers with students with autism that have not been trained," said Nicolette Bainbridge Brigham, training director for Vanderbilt University's Treatment and Research Institute for Autism Spectrum Disorders. "It's a complex disorder and requires certain interventions, and if personnel haven't been trained … it can be very challenging."

Crime and People with Disabilities

The Bureau of Justice Statistics reports:

To compare crime victimization rates for persons with and without disabilities an age adjustment was necessary. In the United States the population with disabilities tends to be older than the population without disabilities. When victimization rates were age-adjusted, people with disabilities experienced higher rates of violence than people without disabilities—40 victimizations per 1,000 persons with disabilities compared to about 20 per 1,000 without disabilities. In fact, the age-adjusted rates of all crimes measured were at least twice as high for persons with disabilities.

...

Persons with a cognitive disability had higher rates of robbery and simple assault than persons with other types of disabilities.

The Autism Society has information for professionals and for crime victims with autism

Early Intervention

WebMD reports:

A six-month, group-based early intervention program with a special emphasis on social development can improve some of the core symptoms of autism spectrum disorder in children as young as 2, according to a study in the Journal of Child Psychology and Psychiatry.

“This and other autism studies suggest that the ‘wait and see’ method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention,” Rebecca Landa, PhD, director of the Center for Autism and Related Disorders and the REACH research program at Kennedy Krieger Institute in Baltimore, says in a news release. “By acting early, we are providing toddlers tools and skills to increase social opportunities throughout their lifetime and positioning them to have the best possible outcomes.”

Here is the abstract:

Background:  Social and communication impairments are core deficits and prognostic indicators of autism. We evaluated the impact of supplementing a comprehensive intervention with a curriculum targeting socially synchronous behavior on social outcomes of toddlers with autism spectrum disorders (ASD).

Methods:  Fifty toddlers with ASD, ages 21 to 33 months, were randomized to one of two six-month interventions: Interpersonal Synchrony or Non-Interpersonal Synchrony. The interventions provided identical intensity (10 hours per week in classroom), student-to-teacher ratio, schedule, home-based parent training (1.5 hours per month), parent education (38 hours), and instructional strategies, except the Interpersonal Synchrony condition provided a supplementary curriculum targeting socially engaged imitation, joint attention, and affect sharing; measures of these were primary outcomes. Assessments were conducted pre-intervention, immediately post-intervention, and, to assess maintenance, at six-month follow-up. Random effects models were used to examine differences between groups over time. Secondary analyses examined gains in expressive language and nonverbal cognition, and time effects during the intervention and follow-up periods.

Results:  A significant treatment effect was found for socially engaged imitation (p = .02), with more than doubling (17% to 42%) of imitated acts paired with eye contact in the Interpersonal Synchrony group after the intervention. This skill was generalized to unfamiliar contexts and maintained through follow-up. Similar gains were observed for initiation of joint attention and shared positive affect, but between-group differences did not reach statistical significance. A significant time effect was found for all outcomes (p < .001); greatest change occurred during the intervention period, particularly in the Interpersonal Synchrony group.

Conclusions:  This is the first ASD randomized trial involving toddlers to identify an active ingredient for enhancing socially engaged imitation. Adding social engagement targets to intervention improves short-term outcome at no additional cost to the intervention. The social, language, and cognitive gains in our participants provide evidence for plasticity of these developmental systems in toddlers with ASD. http://www.clinicaltrials.gov/ct2/show/NCT00106210?term = landa&rank = 3.

Kansas Mandate

KansasReporter reports:

It was an unusual sound to hear in the statehouse—a child screaming at top volume, angry about putting on his shoes.

But members of the Joint Committee on Children’s Issues watched the recording raptly, as the video showed improvements in the autistic child’s behavior over five years, progressing from massive meltdowns to interacting with adults the way a typical child would.

The video demonstrated to lawmakers on the committee how early intervention and services help autistic children improve so they eventually need either no additional assistance, or a very minimal level.

But paying for those early intervention services is costly and often leaves a family in financial ruin if the therapies, which cost in excess of $45,000, are not covered by insurance. Because of that, lawmakers are considering ways to require insurance companies to cover autism therapy. Those services usually include speech and occupational therapy, and applied behavior analysis, which is experimenting with various stimuli and using the autistic child’s reaction to modify teaching approaches.

According to the testimony from Judith Ursitti, with the national advocacy group Autism Speaks, 23 states including Kansas already have some sort of insurance reform law concerning autism. But she said Kansas’ law, passed last session, falls short because it only requires the State Employee Health Plan to cover therapies as a test program. But autism advocates told the committee that this means many autistic children are going without therapy because of its cost and won’t get help during the very narrow window in which many of the therapies work.

Autism in Northern Ireland

The Belfast Telegraph reports:

Autistic people will see services brought into the mainstream by changes to the way they are treated, it has been claimed.

Reforms would ensure that people with autism in Northern Ireland are included in disability legislation and that comprehensive services are provided to them and their families from their earliest years through the course of their lives on a cross-departmental basis.

Autism is a lifelong developmental disorder which affects the way a person communicates with other people. There are difficulties with the ability to understand and predict other people's intentions and behaviour and to imagine situations outside of their own routines. This can be accompanied by a narrow repetitive range of activities.

SDLP MLA Dominic Bradley is piloting the Autism Bill Northern Ireland through the Assembly

See also Autism Northern Ireland

Equity in Special Ed

From Distinguishing Difference from Disability: The Common Causes of Racial/Ethnic Disproportionality in Special Education:

In most school districts, the general and special education staff rarely interact with each other. Through our root cause process, we worked with a cross district team that included general and special education teachers, administrators, content specialists, etc., and more often than not there were disconnects in the conversation due to a limited understanding among practitioners regarding what constitutes a disability. General education teachers tended to express the belief that special education maintains the “magic fairy dust” that will “fix” the learning capacity and outcomes of students. Some of this belief may be due to the reality that prior to the addition of response to intervention in IDEA 2004, special education processes were perceived as organized to provide services to students who fell outside of the normal curve of academic performance.

Medicaid Waiver Cut

The Bloomington Alternative has a story about Medicaid waiver cut in Indiana. The peg is the plight of Ron Habney a 25-year-old man with autism. He has been getting services through Options for Better Living, a Bloomington nonprofit. Options employee John Willman has been accompanying Habney on his hikes -- a necessity to avoid violent outbursts.

In the early 1990s, Options started providing services to those with developmental disabilities through the Medicaid Waiver, which permits federal funds to be used for "an array of home and community-based services that an individual needs to avoid institutionalization." Among the requirements for assistance: "The recipient would require institutionalization in the absence of the waiver and/or other home-based services."

Medicaid has five waiver types, which are administered through state governments. In Indiana, the responsibility falls to the Indiana Family & Social Services Administration (FSSA), which distributes the federal funds to agencies like Options to hire professionals like Willman to care for folks like Ron.

The bulk of individuals served by Options falls under the Autism Waiver and the Developmental Disabilities Waiver, which includes conditions like cerebral palsy, Down Syndrome, Angelman Syndrome and others, Willman says. Most of the rest are covered by the Traumatic Brain Injury Waiver.

FSSA says the Autism Waiver helps individuals living with their families or in other community settings to "gain and maintain optimum levels of self determination and community integration."

The Developmental Disabilities Waiver helps individuals stay in their own homes or in community settings and assists those who "transition from state operated facilities or other institutions to community settings."

On Nov. 10, the State announced $34 million in new budget cuts, which includes a 5 percent cut in reimbursements to hospitals serving patients on Medicaid. The Associated Press reported the reductions came "in response to state revenue shortfalls and growth in the state Medicaid rolls."

...

In January, their time alone together, and by extension Ron's hikes, will most likely come to an end.

Like nearly all Options houses, Ron's place houses two roommates and one support provider manning each of three shifts. Each roommate also has one-on-one time with individual providers every day. Ron and John's hikes are part of that routine.

Under the cutbacks, each house will now have three roommates, Willman says. And they are now classified on a scale of 1 through 6, with 1 needing the least support and 6 the most.

"When Ron's funding was reviewed recently, he was determined to be in a Category 3," Willman says, "which is kind of preposterous, given some of the behavioral issues he's had."

After an appeal process, Ron was reclassified to a 5, which Willman says leaves him wondering just what a 6 might be. But the chances that Ron will have any, let alone enough, time for riding in the car and hiking in the woods are slim.

"I can't stress enough what a catastrophe it's going to be for his life," Willman says. "I mean, basically his home will be his prison. He will not have freedom of choice. He will lose the routine."

Ron Habney's is but one story among dozens at Options, Willman notes. And the waiting list for others to even get services through the Medicaid Waiver is roughly seven years.

Isolation Rooms

Several posts have dealt with the issue of seclusion and restraint.

The Lincoln Journal-Star reports:

The way Lincoln Public Schools officials handled the education of a 10-year-old autistic boy violated federal special education laws and the student's constitutional rights, a lawsuit alleges.

LPS refused to change the boy's education plan despite the recommendation of an expert from Johns Hopkins University, the lawsuit filed Thursday in U.S. District Court in Omaha alleges.

LPS ignored evidence from the doctors at Johns Hopkins that the boy's behavior was better when he stayed in the classroom rather than being moved to an isolation room, according to the lawsuit.

Michigan Mandate Goes Down

AP reports:

The Michigan Legislature won't pass proposals requiring insurance coverage for certain autism treatments in the 2009-10 session.

Republican leaders in the Senate would not allow a vote on the proposal before finishing its voting for the year on Friday. The Democratic-run House had approved the measure last year.

Aggressive last-minute lobbying from Lt. Gov.-elect Brian Calley and other lawmakers could not persuade the Senate to take up the measure.

More than 20 other states have similar laws, but the Michigan measure is opposed by business and insurance groups that say mandating coverage would raise the cost of employer-sponsored health insurance.

Supporters of the measure say it's an issue of fairness and that it would save Michigan money in the long run.

Media, Autism, and Brain Scans

Following yesterday's post about autism screening, a new story has popped up. From US News HealthDay:

A type of brain imaging that measures the circuitry of brain connections may someday be used to diagnose autism, new research suggests.

Researchers at McLean Hospital in Boston and the University of Utah used MRIs to analyze the microscopic fiber structures that make up the brain circuitry in 30 males aged 8 to 26 with high-functioning autism and 30 males without autism.

...

The study is published in the Dec. 2 online edition of Autism Research.

Dr. Stewart Mostofsky, medical director at the Kennedy Krieger Institute's Center for Autism and Related Disorders, called the study "intriguing." However, it remains to be seen if the test is sensitive enough to distinguish between autism and other developmental conditions that impact the brain.

"This is a very preliminary step and one that will require larger samples of children and a broader range of children with autism and other development disorders, particularly other developmental language disorders," Mostofsky said.

This piece is a good example of cautious reporting. Compare and contrast with the hype in the UK Daily Mail:

MRI scan that can tell you within minutes if your child is autistic

A brain scan which diagnoses autism in children in just ten minutes has been developed by scientists.

It would enable the condition to be detected at a much earlier stage so youngsters could begin therapy and treatment before they started school.

The test, which is almost 95 per cent accurate, uses Magnetic Resonance Imaging (MRI) scanners to show how well the different parts of the brain communicating.

"Rapid Test to Screen for Autism"

At the Mackinac Center, Jack McHugh writes:

Autism and treatment for its various complications is becoming one of the most discussed mandates. Autism is a brain disorder that affects three areas of development: communication, social interaction, and creative or imaginative play. In the past, autism has fallen under the broader category of mental health, but one of the latest state legislative trends is to pass a standalone autism mandate separate from mental health benefit mandates. Thus far, 25 states have passed autism mandates, but the number of bills introduced has grown each year. With advances in the diagnosis (including a new rapid test to screen for autism) and treatment, autism mandates will likely remain high on legislative priority lists.

According to Autism Speaks, 23 states have enacted autism mandates.

It is not clear what Mr. McHugh means by "a new rapid test to screen for autism." (As of this post, he had not responded to an email query.) He may be referring to the Rapid ABC screener, an assessment that researchers at Emory and Georgia Tech are developing. But this assessment is still a work in progress, and it purports only to identify children who may be at risk of autism. In any case, rapid screening measures have been around for some time. Diagnosis, which is different from screening, remains a much more elaborate process.

If he is referring to press reports this summer that British scientists had developed a 15-minute brain scan, the claim is badly mistaken. As an earlier post explained, press reports were misleading -- as they often are when it comes to autism science. The British National Health Service said of the study in question:

This small preliminary study is a valuable contribution to the search for a better way of identifying autism, a condition that can be difficult to diagnose due to its wide range of causes, types and symptoms. However, it is not possible to say at present whether such a technique could replace or even aid current diagnostic methods in the near future. Far bigger studies comparing the brain scans of larger numbers of people with ASD and those without the condition are now needed to assess whether this scan is accurate enough for widespread use.

If Mr. McHugh gets in touch and explains that he was referring to something else, I will of course update this post.

UPDATE: Mr. McHugh did send me an email noting that the paragraph was actually a quotation from a piece by the Council for Affordable Health Insurance, an industry group. I will email the author of the original piece.