Race, Autism, and IDEA

The New Haven Register reports that a Connecticut school district is facing a loss of funds because of the racial composition of its special ed students:

Amity Superintendent of Schools John Brady said he is frustrated and shocked. His dilemma began last year when the district — which serves Bethany, Orange and Woodbridge — received a letter from the state Department of Education. The state told Amity it has too many white students who are diagnosed as autistic when compared to other racial subgroups. Amity last year had 38 white autistic students, one Asian and one black.

Amity and Vernon are the only two school systems in the state and among only a handful nationwide to have a “significant disproportionate” amount of white autistic students, state officials said.

Such a classification requires the district to divert 15 percent of its Individual with Disabilities Education Act, or IDEA, federal funds, or $67,000 in Amity’s case this year, toward programs designed to reduce those numbers.
...

The Amity district has two middle schools and a high school. Autism is usually diagnosed early in a child’s life, long before middle and high school.

Brady said Amity has a 90 percent white student population so it makes sense a majority of their students with autism would be white.

“The state doesn’t look at extenuating circumstances,” Brady said. “We were put on notice, but (we) told them this cannot be solved. Someone wants us to magically reduce the number of Caucasians at Amity with autism. We can’t do that.”

More here on federal regulations regarding disproportionality.

Autism in Wales

Governments all over the world have to deal with autism. From time to time, this blog will post information about autism policy and politics outside the United States. The latest example comes from the United Kingdom:

THE Government must fulfil its commitment to adults living with autism, by supporting the development of an effective Adult Autism Strategy, says a Gwent MP.

Don Touhig is trying to raise awareness about the effects of autism and those living with the condition, and his latest move is to table an early day motion (EDM) in the House of Commons.

The Islwyn MP's EDM will call on the Government to fulfil its commitment to the Adult Autism Strategy, which will seek to maximise opportunities for people living with autism, and which has been subject to wide-ranging consultation.

Budget Cuts in California

A case study of hard economic times:

The State Department of Developmental Services announced Friday its plans to close the Lanterman Developmental Center in Pomona.

The 24-hour residential care facility serves individuals with developmental disabilities.

Citing a declining population and deteriorating infrastructure, Terri Delgadillo, director of the Department of Developmental Services, said if approved by the legislature, the center would begin the closure process no earlier than July.

"Parts of Lanterman are over 100 years old," Delgadillo said. "It's hard for us to operate, plus economically it's a challenge for us, because we know repairs will be needed."

Wakefield

The vaccine wars continue. Associated Press reports:

A British doctor who claimed links between a common children's vaccine and autism failed in his duties and acted against the interest of the children in his care, a medical panel ruled Thursday.

The General Medical Council ruling against Dr. Andrew Wakefield regarded research that he and other doctors conducted in the late 1990s, purporting to show that the combined measles-mumps-rubella (MMR) injection could put children at risk of autism or bowel disease.

That research, published in The Lancet medical journal in 1998, and media coverage of it that followed, led many parents in the U.K. to refuse to vaccinate their children with the injection, which is administered around the world.

Ten of the study's 13 authors have since renounced its conclusions. The Lancet said it should not have published the study and that Wakefield's links to litigation against the manufacturers of the MMR vaccine were a ''fatal conflict of interest.''

In its ruling, the disciplinary panel concluded that Wakefield acted dishonestly and was misleading in the way he described the study. It said he should have disclosed that he was paid to advise lawyers acting for parents who believed their children had been harmed by the vaccine.

The UK Guardian has a timeline of the case.

The General Medical Council's Offical Finding of Facts is here.

Heckuva Job, TSA

Airport screeners detained an autistic person. An eight-year-old autistic person. Sabeeha Rehman writes:

My 8 year old grandson Omar, who is on the autism spectrum, was pulled out at the airport and investigated as a terror suspect - his name being similar to that on the watch list. He was enroute to Disney World with his parents and siblings. He was held for an hour and it was only when his date of birth (2001) did not match that of the person's on the watch list, who we understand was in his twenties, and after several huddled meetings and phone calls, was he and his family allowed to board the plane. He was agitated while being held for an hour, and sat there stimming, but they had to go through their procedures, before they could rule him out as a terrorist. Had his father not been with him during the one hour detention - he too was detained and then cleared - I dread to think of the damage that would have done to Omar.

Due Process

The Patriot-News has a revealing case study of due process in special ed disputes:

Perry Zirkel, an education and law professor at Lehigh University and a special education expert, said due process hearings have increased nationally over the last two decades, a trend mirrored in Pennsylvania. He said the state ranks among the 10 most litigious in the nation in special education.

And it’s showing up here in the midstate.

Central Dauphin School District’s legal spending increased by more than 260 percent from the 1997-99 school year period to the 2007-09 school year period. Over the same 10 years, legal spending in the West Shore School District increased by about 67 percent while other districts saw smaller increases.

Of those legal bills, nearly half of Central Dauphin’s for the 2007-08 and 2008-09 school years went toward legal fees pertaining to special education.

Broadening definitions have put more conditions under the special education umbrella and parents’ increasing awareness of their child’s legal rights have contributed to increased special education enrollment and litigation, he said.

See an article by Zirkel in Principal.

Seclusion and Restraint: Wisconsin

A Wisconsin bill (AB682 and SB468) addresses the issue of seclusion and restraint. The Journal-Times reports:

The bill would prohibit school employees "from using seclusion on a pupil, using any physical restraint that poses certain identified risks to a pupil, or using any mechanical restraint on a pupil," according to a Legislative Reference Bureau analysis of the bill.

A school employee may use physical restraint or a timeout on a pupil only if certain requirements, established in the bill, are met. The bill would require instructors to be trained in the safe, effective, and appropriate use of physical restraint and timeout.

The Wisconsin Education Association Council, the state's teachers' union, opposes the legislation.

In a statement, Christina Brey, a WEAC spokeswoman, said organization officials support some aspects of the proposed legislation, like teacher training and parental notification, but have questions about some of the language in the bill.

It is important "to Wisconsin educators that students are physically and emotionally safe at school," Brey said. The organization supports "a reasonable approach to ensuring that safe environment - for children as well as school staff."

Autism and Girls

A special-ed teacher suggests that there may be some distortion in data on the gender distribution of autism:

We should never assume that females and males on the autism spectrum should look the same. There are gender differences including behavior and interests.

Using such tools as the Sally-Anne Test along with assessing over longer periods of time is essential in properly diagnosing girls who fall within the autism spectrum. Males currently represent the majority of children with autism. However, it is appears that girls are not fully accounted for in those figures. Females not properly diagnosed and treated at an early age often have severe problems later in life. These issues include depression, bullying and unhealthy social relationships due to their inability to understand social cues

A Newsweek article made a similar point a couple of years ago.

Politics, Ideology, and Autism

Ari Ne'eman has shrewd political observations in an article in The New Atlantis:

Both the disability-rights movement and the conservative tradition point toward a common policy goal: shifting the research agenda from one that seeks to remake society to one that aims to improve the opportunity for all citizens, regardless of disability, to make the most of the lives they have. Conservatives have been strong on the first part; a skepticism of utopian central planning, whether economic or scientific, is a central conservative value. However, the right has a mixed record on the latter. A common criticism of conservatism among proponents of disability rights is that it is hypocritical to view advocacy for the sanctity of human life as including only issues like assisted suicide and abortion; issues such as human dignity over the full course of the lifespan must enter the equation as well. To disability-rights advocates, the ADA and similar pieces of legislation are civil rights laws intended to remove people from government dependence and encourage employment for a population previously denied the access needed to pursue it. Recent support by the business community for a strengthening of the ADA is ample proof of this. It is no accident that the ADA was crafted by Reagan appointees and signed by the first President Bush—there is something very friendly to conservatism in the legislation that serves as the bedrock of the modern disability-rights policy agenda

Also see a similar theme in a Frum Forum piece by Dana Commandatore.

The Cost of Autism

The New York Times reports:

Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.

That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.

...

“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”

The Ganz study is available here. As baby boomers retire, he noted, many of their adult children with autism will move into adult care.

Those costs, combined with very limited to nonexistent income for their adult children with autism combined with potentially lower levels of savings because of decreased income and benefits while employed, may create a large financial burden affecting not only those families but potentially society in general.

TV Report on Autism Costs

Pittsburgh's WTAE-TV has a report on the costs of autism (link takes you to video, but embedding is not available).

A transcript excerpt:

When it comes to cash, Wright reported Gov. Ed Rendell said that Pennsylvania is ahead of other states. In his term as governor, the commonwealth went from zero funding for autism to spending $20 million.

He said that funding will actually save taxpayers money in the long run.

"If we get a 2-year-old and are able to diagnose with autism, studies have shown we can avoid $1.9 million by doing that early diagnosis," Rendell said.

Autism Drugs

According to Business Week, the pharmaceutical industry is looking at medications for autism.

Diagnoses among children jumped 57% from 2002 to 2006, according to the Centers for Disease Control & Prevention in Atlanta. Roughly 1 in 110 8-year-olds in the U.S. is on the autism spectrum. Just as interesting to drugmakers is the fast-growing population of adult autistics who can't be helped by the kind of intensive behavioral therapy that sometimes works on children, because their brains lack the same plasticity. One decade from now there will be seven times as many autistics entering the adult-services sector as there are today. The disorder already costs the U.S. about $35 billion per year for special education, medical care, and assisted living. If the drug industry can devise better treatments, families and society will find a way to pay

The reporter errs in claiming that behavioral therapy cannot help adults. It may be more effective with children, but adults may benefit, too.

Insurance Mandate: Missouri Hearings

The Kansas City Star reports on hearings in the Missouri Legislature:

“There is a huge autism tsunami that is about to hit the state of Missouri,” said Lorri Unumb, a senior policy analyst for Autism Speaks, a national advocacy group. “It is going to cost an extraordinary amount of money in special education and adult care if the current generation of kids does not get the treatment they need.”

Officials representing insurance companies said the extent of coverage that would be required under the bills would drive premiums upward and force small businesses to give up coverage for employees.

“Small businesses are dropping insurance at an alarming rate,” said William Shoehigh, a lobbyist for the insurer UnitedHealthcare. “They’re very cost-sensitive.”

The hearings concerned these bills:

• HB 1311: Requires health carriers issuing or renewing a health benefit plan to provide coverage for the diagnosis and treatment of autism spectrum disorders;
• HB 1341: Requires certain health benefit plans to provide coverage for the diagnosis and treatment of autism spectrum disorders provided in the state to individuals who are younger than 18 years of age; and
• SB 618: Requires health carriers to provide coverage for the diagnosis and treatment of autism spectrum disorders under certain conditions

Floortime Setback in CA

The Los Angeles Times reports:

Families with autistic children in eastern Los Angeles County have filed a class-action lawsuit against the nonprofit agency that provides them with state-funded services, alleging that it had illegally discontinued their therapy for the disorder.

The agency, the Eastern Los Angeles County Regional Center, informed more than 100 families late last summer that their children were losing the therapy -- known as the DIR model, or "developmental, individual difference, relationship-based" -- as a result of state budget cuts.

The therapy is the basis for a popular treatment known as Floortime, in which a therapist follows a child's lead during play activities to build communication and social interaction skills.

Filing the suit were attorneys from Public Counsel and Gibson Dunn & Crutcher.

More on the suit here.

Seclusion and Restraint

The Palm Beach Post reports:

For a third straight year, Florida parents and special-education advocates are trying to get a law passed that would prevent school employees from holding students with disabilities facedown or shutting them in rooms to try to control behaviors associated with their conditions.

This year, proponents have the backing of the National Autism Association, Autism Speaks and 26 state organizations that are primarily involved in medical or disabilities issues.

There's also a federal push to limit the use of such practices after a U.S. Government Accountability Office report revealed hundreds of cases of alleged abuse and several children who were killed when school and treatment center staffers used the methods.

...

To help make their case, supporters of the bill (HB 81) have a grainy video of a 14-year-old autistic boy from Citrus County who was dragged on his hands and knees and thrown into a dark room by his teacher and an aide last school year. When he tried to get out of the room, the teacher slammed the door shut on his hand, leaving him in the room with a bleeding and broken finger.

The GAO report is here.

A hearing of the U.S. House Education & Labor Committee is here.

New Jersey Autism Laws: Discrimination and Registry

The Star-Ledger reports on two new laws in New Jersey:

The first of the new laws — which takes effect immediately — expands New Jersey’s anti-discrimination law, to ensure that no one who has autism and related neurological disorders is denied access to libraries, restaurants, gyms, pools, theaters and other public. It also guarantees equal access to housing and jobs.

The law previously had applied to people with mental or physical disabilities.

The second law allows adults to join the state autism registry, established so New Jersey health officials can track cases and look for possible trends. The registry, which is voluntary, initially was open only to children, who are added by health professionals.

New Jersey has the country’s highest rate of autism, with one in 94 children affected, according to the federal Centers for Disease Control and Prevention. The national average is one in 150.

The anti-discrimination bill had bipartisan support. Prime sponsors were Democratic senator Joe Vitale and Republican senator Tom Kean. In a release, Kean said:

Autistic residents will now receive the same protections as other disabled citizens from discrimination in access to housing, employment and public accommodations such as theaters, stores and restaurants. New Jersey is known for opening doors of opportunity for all its disabled residents. This bill’s passage shows that legislators of both parties can and do work together to build a more compassionate New Jersey.

Biomedical Research

An article in the Journal of the American Medical Association finds that after a decade rapid increases, the rise in biomedical research funding (from all sources) slowed from 2003 to 2007. In constant dollars, funding from the National Institutes of Health and industry appears to have decreased by 2% in 2008.

Autism Speaks reacts with a statement:

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration's top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President's promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks. “In addition to the funding of research, it is also vital that any healthcare reform legislation sent by Congress to the President must include – as both the current House and Senate versions do – an end to insurance discrimination against people with autism by requiring insurers to deliver coverage for behavioral health treatments.”

New Publication

The National Autism Center has issued a new manual, Evidence-Based Practice and Autism in the Schools. The 258-page publication includes findings from the Center’s newly released National Standards Report, an analysis of treatments for children and adolescents with ASD.

Specialist Shortage

The Wall Street Journal reports:

As the House and Senate intensify the process of melding their two health bills, pediatric groups are lobbying to secure more funding for training and higher
reimbursement for pediatric sub-specialties, in the hope of encouraging more doctors-in-training to enter the field. Specialization typically requires up to three years of training beyond a general pediatrics residency and can pay salaries less than half the rate of adult specialty medicine. At present, 17 states lack at least one hysician in one of 13 sub-specialties.

Wednesday, in a briefing for members of a congressional caucus on children's health, the National Association of Children's Hospitals and Related Institutions, known as
Nachri, will present results of a December survey. In it, members said that shortages of doctors across a multitude of pediatric sub-specialties are forcing 90% of hospitals to delay appointments, lose patients or refer them elsewhere.

Of particular concern, given the rise in autism-related disorders, is a shortage of development-behavioral experts; half of hospitals in the survey reported that it takes more than three months to see a developmental pediatrics specialist, one of the longest wait times.

Cure? Treat? Rehabilitate? Educate?

Noting that the Senate health care bill focuses autism funding on curative research, Susan Senator suggests that many parents might not agree with such an exclusive emphasis:

They want help that comes in many forms: educational help for their child; independent living help in adulthood; respite help to keep their family together in the midst of great challenge; and yes, even the help of no longer having to deal with autism at all. But all of these forms of help cost money, and most demand research. All of these forms require a piece of the public’s limited attention span. There are currently 1 out of 100 people in the country diagnosed with autism, but how many of them will benefit from all that federal money going towards cure research? How many more would benefit from school support, job training, job supports, and some level of assisted living — even here in relatively well-resourced Brookline?

Insurance Mandate: Missouri, Kansas, New York

An editorial in the Kansas City Star:

Fortunately, Missouri Gov. Jay Nixon says an insurance mandate is one of his top priorities for this year’s legislative session. The idea has bipartisan support. “While I normally oppose mandates, I, like many Republicans, support this requirement,” said Rep. Jeff Grisamore of Lee’s Summit, who is co-sponsoring a bill in the House. “It is the right thing to do for children and families affected by autism and the cost-effective thing for the state.” Advocates must make sure the legislation isn’t damaged by unrealistic caps and exemptions as it makes its way through the legislature. Prospects in Kansas are less clear, despite a two-year push by families and advocates. Legislation stalled in committee last year, with key lawmakers voicing concerns that a mandate would significantly hike insurance premiums overall. That hasn’t happened elsewhere, however. The earliest states to pass insurance mandates have found that premium increases amounted to less than $1 a month.

In New York, a state senator with two grandsons on the spectrum is building bipartisan support for a mandate:

Sen. Roy McDonald, R-Saratoga, Saturday said he will push hard for legislation now in the Senate requiring private insurers to cover the costs of autism and therapy.

McDonald is the chairman of the Senate’s Committee on Autism and Disabilities. He is also the force behind a number of autism forums being held across the state. One held Saturday in the Gowana Middle School auditorium on the Shenendehowa school campus drew nearly 100 people including local elected officials, educators and families.

Many in the audience had a direct connection to someone living with autism. They used the forum’s question and answer period to describe the daily hardships they overcome providing care and support for their loved ones.

McDonald has held similar forums on the topic in Staten Island, Poughkeepsie and Utica. He plans to hold more on Long Island and in New York City. The senator from Saratoga County clearly understood the personal stories of the difficulties families face in getting insurance and providing care for those with the condition. McDonald is the grandfather of two young children diagnosed with autism.

...

Saturday’s forum included a panel of five autism professionals who explained the varying levels of autistic behavior and how and where families may find assistance. A second panel of four politicians included McDonald along with U.S. Rep. Scott Murphy (D-Glens Falls), Assemblyman George Amedore (R-Rotterdam), and Assemblyman Bob Reilly (D-Loudonville).

Postcode Lottery

In the United States, the quality of autism service is often a matter of geography. The same is true in Scotland, as this news report indicates:

A campaign has been launched at Holyrood to improve support for autism sufferers and their carers. Liberal Democrat MSP Hugh O’Donnell wants a national strategy put in place to end the current “postcode lottery” in the provision of services. He tabled his member’s bill in the Scottish Parliament yesterday and is confident he will be able to secure the support of at least 18 MSPs from two of the four major parties, that he needs to take it forward. The news will be welcomed by Aberdeen woman Annette Masson, who is urging the Scottish Government to review the assessment, diagnosis and appeal procedures operated by local authorities to ensure youngsters get the education they deserve. Mr O’Donnell, a central Scotland MSP, said: “Scotland is the only part of the UK without a national autism strategy, which means that people with autism across Scotland and their carers face a postcode lottery when it comes to services.

H

Adults and Autism

Luann Hinkle, the mother of a high-functioning young adult on the spectrum, writes of a noteworthy trend:

Things just aren’t getting better, and individuals with autism are growing up. Now we need to include school-aged children, teenagers and young adults in our mental snapshot. The number of autistic children expected to need extensive adult services by 2023 - more than 380,000 people - is roughly equal to the population of inneapolis. And, the bill for autistic children entering adulthood over the next 15 years is an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period.

There are surprisingly few stats on American adults on the spectrum, but a British study casts some light. See a Time article on this study.

Comparative Perspective: Autism in China

Cordelia Ross, who has worked with autistic kids in China, explains that the country has little tolerance for differences.

Which is why children with autism are not accepted into kindergartens or schools. If they can’t work in the classroom like the other students, they must not be in the classroom. If they stand out in any way, either by their appearance (students in China follow strict rules for uniforms, shoe color, even hairstyles) or their behavior, they are seen as a distraction to the other students and hinder their learning. Even the few special education schools that do exist in China cater to the hearing- and visually-impaired and those with intellectual disabilities; they lack the knowledge and skills to educate children with autism. Autism (孤独症, literally “the loneliness disease”) is still a new term in China, and there is very little awareness of the condition. Children with autism are therefore rejected from both the mainstream and special education system. Parents see this as a complete failure; without education, can their kids still become functioning members of society?

Autism Clusters

The San Jose Mercury News reports:

Silicon Valley's concentration of autism cases has triggered a spate of theories, from neighborhood contamination to a "geek gene." But a team of researchers from the University of California-Davis has found one factor that unites this and nine other California clusters of cases of the developmental disability: parental education.  College-educated parents of autistic children are more likely to fight for a diagnosis — and seek the state-funded services that accompany it — than less-educated parents, according to the team.

See the MIND Institute release here.

Belief in a link between parental intelligence and autism goes back to Leo Kanner, who first described autism in 1943.  As Laura Schreibman explains in The Science and Fiction of Autism (Harvard University Press, 2005, p. 82):

[T]here may have been a sampling error in Kanner's first group of parents.  It is certainly more likely that an intelligent, well-educated parent would have been aware of Leo Kanner, the leading child psychiatrist of his day, and that a parent who could afford to take his child to Johns Hopkins University to be seen by Dr. Kanner must have had above-average financial resources.

Ari Ne'eman

The Newark Star-Ledger reports on Ari Ne'eman:

Today, after a swift and sometimes bumpy ascent in the realm of national autism politics, he is the first person with autism to be nominated for a seat on the National Council on Disability. If confirmed by the U.S. Senate, he also will be the youngest person to serve on the board in at least 20 years, council spokesman Mark Quigley said.

Ne'eman, who has Aspegger Syndrome, is a spokesperson for the neurodiversity movement.

He’s tossed verbal firebombs at Autism Speaks, one of the nation’s best-funded autism groups, accusing the organization of insulting people with autism by directing most of the money it raises to researching autism’s cause rather than helping those who already have the condition.  The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence. "We should be spending at least as much money on improving our quality of life instead of trying to get rid of us," he said. He occasionally complements his comments with guerilla tactics. Last month, he organized a protest outside of Carnegie Hall in New York City, where an Autism Speaks fundraiser was being held, he said. Ne’eman knows he’s a lightning rod, saying he’s received death threats. After one threat last summer, he said, he had to be escorted by police to speak at an event in New Hampshire.

Fragile X Funding

The National Fragile X Foundation reports:

The National Fragile X Foundation applauds the United States Congress and President Barack Obama for including Fragile X Syndrome for the first time ever within a select group of conditions eligible for research funding from the U.S. Department of Defense.

The new law, signed by President Obama on Dec. 19, designates $50 million through the FY 2010 Department of Defense Appropriations Act for the Peer Reviewed Medical Research Program (PRMRP). Fragile X is one of a select group of priority conditions that are eligible for funding under the PRMRP.

"We are thrilled that Congress and the President have recognized this need in our communities," said Robert Miller, Executive Director of The National Fragile X Foundation (NFXF). "Fragile X poses a serious challenge to families and communities everywhere, challenges that are much more acutely felt by our military families. This funding is a promise of support and a means to a better outcome for those affected by Fragile X."

Fragile X syndrome and its associated disorders are caused by a genetic mutation on the X chromosome and impact over one million Americans. Symptoms of Fragile X Syndrome include intellectual, physical and occupational disabilities. Behavioral problems, including autism, are also common among those with Fragile X.

"As the only Member of Congress who has a child with Fragile X, I understand the true value of priority designation for this genetic disorder," said Congressman Gregg Harper (R-Miss.). "Thousands of families across America are battling this disease and this research funding opens a new chapter of hope as we continue to learn how Fragile X impacts individuals. I'm thankful for the leadership of Senator Thad Cochran of Mississippi, the Ranking Republican on the Senate Appropriations Committee, who helped secure these federal dollars."

In March 2009, Representative Harper did a public service announcement on Fragile X.  At the same time, he joined with other members to form a Fragile X Caucus.  In July he discussed Fragile X on MSNBC:



See here for more on the link between autism and Fragile X.

International Perspective: Autism Sunday

Autism activism has gone international.  For instance:

The International Day of Prayer for Autism and Asperger’s Syndrome falls on 14th February. The Founders of Autism Sunday, parents and carers of a teenager with autism, Ivan and Charika Corea from the United Kingdom have urged campaigners around the world to use the occasion to campaign and lobby on the serious issues of autism and Asperger’s Syndrome.
There are over 60 million people with autism around the world. Many suffer without proper public services. The current credit crunch and recession has devastated many families with autism and Asperger’s Syndrome around the world.

Limits of the Wisconsin Mandate

One Wisconsin family found that the new autism-coverage mandate is not as extensive as it thought.  WISC-TV reports:

The law applies only to state-regulated insurance companies. Their employer-based one, AETNA, is federally regulated and when the Tarnutzers tried to buy state-based insurance, numerous companies denied them, citing Alex's pre-existing condition. They are among many families who are still falling through the cracks, WISC-TV reported. "Everyone in governmental power needs to start taking a look at how they can fill that crack. Because these kids need help and they need help now," she said. State Rep. Scott Newcomer, R-Pewaukee, voted against the mandate. He said he wanted the state to fully fund its current Medicaid autism program that serves such families. There's still a waiting list for that program. "You're talking at least half the people, if not up to 70 percent of the people, will not have coverage under this program and I mean that's just crazy!" he said. "We need to fund all of these families. The insurance mandate -- all it did was fund a few of the families and increase the cost."

New State Laws on Insurance Coverage

New state laws on insurance coverage of autism take effect today in Connecticut and Wisconsin.

For an interactive map of state initiatives, click here.

Trudy Steuernagel

The year 2009 witnessed the loss of Professor Trudy Steuernagel, who did pioneering work on autism policy.  A few weeks ago, the Cleveland Plain Dealer carried an account of her struggle with her son's low-functioning autism and her death at his hands.