Autistic and Overlooked

August 8th, 2009

By Linda H. Davis
Wednesday, April 2, 2008; Page A19

As people around the globe acknowledge World Autism Awareness Day today — proclaimed by the U.N. General Assembly last December — it is important to consider an aspect of this devastating disorder that has been curiously and persistently neglected: the lifelong care of autistic adults.

While greater media attention on autism is certainly welcome, virtually all coverage of autism in recent years has focused on a cure or on the education of young autistic children. You would think that, like children in a fairy tale, autistic children never grow up. Yet parents are getting old, tired and ill caring for their adult children. And they are doing it while state and federal budgets, already lean, are getting perilously thinner. How is society going to pay for the permanent care of millions of our citizens? What kind of lives are we going to give them? How are we going to support their families, many of whom care for their children into adulthood as they themselves wear down?

The explosion in autism is striking: A disorder on the autism spectrum is diagnosed in roughly one in every 150 American children. Assuming that that rate holds, by 2016, less than a decade from now, the number of American adults (those 22 and over) with autism is expected to be nearly 1.5 million. The costs to society and to American families will be staggering.

Reports of autism cases grew dramatically in the U.S. from 1996 to 2007.

Reports of autism cases grew dramatically in the U.S. from 1996 to 2007.


Though many Americans are familiar with the 1997 Individuals With Disabilities Education Act, which mandates a free and appropriate education until age 22 for children who have disabilities, few seem to know or care that there is no similar legal mandate for them after age 22. As states struggle to serve their most vulnerable citizens while dealing with budget cuts at all levels, the number of Americans with disabilities swells.

Autism affects a relatively small number of the 54 million Americans with disabilities. Some of those people are temporarily incapacitated, but millions will never be cured. Residential facilities are limited and often have long waiting lists. Virtually all these facilities suffer from high turnover in direct-care staff, who are typically underpaid and overworked. On top of this, an autistic person can be difficult to place. Many group homes don’t accept people with autism, whose sometimes-trying behavior can require individual aides. People with autism often cannot work in their community and require day care. The help that states can afford and the treatment that parents want for their children can be at odds. Also, disabled adults must meet certain criteria to be eligible for state-funded housing and care; yet there are no guarantees. In Massachusetts, where I live, adults with Asperger syndrome — a high-functioning form of autism — are not eligible.

My own family is a case in point. Two years ago, at age 53, I learned I had an incurable form of non-Hodgkin’s lymphoma. In an instant, my life expectancy was reduced to an additional seven to nine years. Suddenly, our plans to keep our autistic son, Randy, living at home with us indefinitely looked highly risky. When we sat down with our case manager from the state Department of Mental Retardation and requested an eventual residential placement for Randy — through my sobs — we were told that the agency would need six months’ notice.

Now the question is: Do we wait until I’m actually dying, or do we give up our son before we want to? Like most families, we are not rich. The life insurance policy we have for Randy, who is 21, will not come close to providing for his lifelong care. Our daughter is just two years out of college, and we want her to be free to live her life unhampered by caring for her brother.

We are fortunate that Randy is able to work in our community, albeit with supervision. When he turns 22 this summer, he will begin a job while living at home. But because of budget cuts, our area office of the Massachusetts Department of Mental Retardation, which is to fund Randy’s work program (it costs money to have the disabled work when they need supervision), lacks the money for transportation. As long as my condition remains stable, I’ll drive Randy to and from work — typically, a half-hour ride each way. When my health fails, my husband, who works at home, will have to drive Randy. Or we’ll have to hire a driver, no small expense.

Still, for us, transportation is a minor issue. It’s the big picture — who will love and care for Randy after his father and I are gone — that keeps me up at night.

Linda H. Davis is the author, most recently, of “Charles Addams: A Cartoonist’s Life” and is president of the nonprofit SAGE Crossing Foundation.

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OBAMA AND CLINTON ON AUTISM, VACCINES, RESEARCH

August 5th, 2009

Obama/Clinton Last December A-CHAMP began a campaign to obtain answers from all the presidential candidates to our autism issues questionnaire. We have received responses so far from Senators Obama, Clinton, Biden and Dodd. Below are the responses for Senators Obama and Clinton. We hope this will be useful in helping voters decide who to vote for in upcoming primaries and caucuses. We will continue our efforts to get responses for Senator McCain and Governor Huckabee.

The responses below are unedited. Senator Obama’s response is presented first because he returned his answers before Senator Clinton.

Senator Obama’s Response to the A-CHAMP Autism Issues Questionnaire

Will you fully fund the Individuals with Disabilities Education Act?

As a member of the Illinois State Legislature I fought to support special education and as a U.S. Senator I have continued that fight. As president, I will fully fund IDEA so that we provide children with the support they need to receive a free and appropriate education in the least restrictive environment based upon best practices and with the goal of fully including them in schools and the community. As the number of children diagnosed with autism spectrum disorders (ASD) increases, we must ensure that teachers, classrooms and school districts are prepared to meet their special needs.

Do you believe that the Combating Autism Act provides enough money to find the cause, or causes, of autism and effective treatments?

I supported the Combating Autism Act of 2006. It was a good start. As President I will make sure that money appropriated by Congress for autism spectrum disorders reaches the organizations and people that they were intended for. Research is important but it is only one of the steps we need to take. Americans with ASD should be supported throughout the lifespan. Early diagnosis and early intervention has been proven to lessen the amount and intensity of services Americans with ASD need as they grow older. We must appropriate the funds needed to support all Americans with disabilities. As president, I will go beyond the Combating Autism Act to develop a comprehensive autism policy that invests $1 billion annually by the end of my first term in office to address ASD on all fronts. I will also ensure that all federal efforts to combat ASD are coordinated through a central Federal ASD Coordinator who will work across agencies to better coordinate ASD research, awareness, treatment, and support for families.

How much funding will you request to study potential environmental triggers of autism?

There is much evidence to suggest that ASD is a genetically-based neurological condition with environmental triggers. As president, I will lead an effort to conduct research to confirm these findings and study the potential triggers. We must find out why many Americans have ASD and other special needs, the causes, and best treatments and intervention.

Do you believe there is an autism epidemic in the United States?

Autism Spectrum Disorders (ASD) is the fastest growing developmental disorder in the United Sates and, perhaps the world.. One in 150 children is diagnosed with ASD. These numbers can not be explained solely by increased awareness or changes to the diagnostic criteria. It is a health crisis and I will act accordingly. There are many Americans with special needs. They will have a partner in the federal government under my administration.

What will you do to stop health insurers from discriminating against people with autism and their families?

Many parents and state legislatures have led the fight to prevent medical insurance companies from delaying and denying coverage to those with ASD, claiming it as a preexisting condition. Because of this, too many Americans with special needs and their families have struggled with a crushing financial burden. Many Americans have tried to do something about this, and I applaud their efforts. In South Carolina, for example, parents Marcella Ridley and Lorri Unumb and state senators Joel Lurie (D) and David Thomas (R) led the way in passing Ryan’s Law, which ensured that children with ASD would get the treatments they need. Of course, after we create universal health care by the end of my first term as president, all Americans with ASD will have access to affordable and quality health care, regardless of “preexisting” conditions.

What will you do to assure that health insurers pay for promising new treatments and behavioral therapy?

As president I will work to create universal health care by the end of my first term so that all Americans have access to affordable health care. My health care plan will also improve the quality of care available to Americans anduphold the principle of mental health parity. I will also work to bring Americans with ASD, their families and experts together to deal with important issues, like standardization of treatments, diagnostics, screening, and support for promising new treatments and therapy.

Do you think vaccines should be investigated as a possible cause of autism?

I believe that the next president must restore confidence and open communication with the American people. This includes environmental policies and government funded research. An Obama administration will go where the science and the facts lead us, whether it is about climate change or toxic heavy metals in our environment.

What will you do to protect Americans, especially young children and pregnant women, from exposure to mercury through vaccines?

I support the removal of thimerosal from all vaccines and work to ensure that Americans have access to vaccines that are mercury free.

What will you do to provide for the lifetime care that 250,000 to 500,000 current children with autism will need in the future?

ASD is not just a medical issue nor a children’s issue. ASD affects behavior, communication and socialization and means that Americans with ASD will have a lifetime struggle to fully integrate within the community. However, the nation must also work to recognize the valued role that Americans with special needs have within our communities. Americans with special needs must be supported throughout their lifetimes. As President, I will work with the special needs community to ensure that those with ASD acquire the skills and education they need, achieve to their fullest capabilities and live the independent life of a full citizen in their community. I will support programs that create opportunities, improve the quality of life and maximize potential for all individuals with ASD and their
families.

Would you support a large-scale federal study of the differences in health outcomes between vaccinated and unvaccinated groups?

Experience has taught that effective medical research must be “large-scale” and well funded. I believe Americans should know must know the health effects that caused by the presence of mercury in vaccines. I will also support an examination of the National Vaccine Injury Compensation program, a program designed to compensate those injured by vaccinations.

Would you support a federal right for families and individuals to choose for themselves which vaccines they will use?

I support screening for a wide variety of diseases and disorders. Early diagnosis and early intervention are the best practice for most illnesses. I believe that every American has the right to access these screenings, and I believe that every American has the right also to refuse these screenings voluntarily if they so choose. I also support a thorough
and independent review of our nation’s vaccination policies.

Are you satisfied that the federal vaccine approval process is free of conflicts of interests, transparent and rigorous?

As President, I will conduct a thorough examination of all federal programs to ensure that they are effective and operating in the best interests of the American people. And I will ensure that sound and unbiased science, not ideology, guides decisions made in my administration.

Senator Clinton’s response to the A_CHAMP Presidential Candidate’s Questionnaire

Will you fully fund the Individuals with Disabilities Education Act?

Yes. I support fully funding the Individuals with Disabilities Education Act. Among my many efforts to fully fund IDEA, I co-sponsored the IDEA Full-Funding Act of2003 to finally fulfill the federal government’s long-standing promise to provide for 40 percent of the average per
pupil expenditure for each and every child with a disability. In 2005, I offered an amendment to provide $4 billion in additional funding for IDEA; the amendment failed by a narrow margin. I have been an advocate for people with disabilities throughout my career in public service.

After graduating from law school in 1973, I went to work for Marian Wright Edelman at the Children’s Defense Fund, walking door to door in New Bedford, Mass., to figure out why there were discrepancies between the number of school-age children and the number of children enrolled in school. What I discovered was heartbreaking - kids were kept out of school because of their physical disabilities. We submitted our findings to Congress and our study helped lay the groundwork for the Individuals with Disabilities Education Act, which mandated that children with physical, emotional, and learning disabilities receive a free, appropriate public education.

As a Senator, I helped write the IDEA Reauthorization Act in 2004 in order to ensure that we have targeted resources dedicated to teacher training. As President, I will continue my fight on behalf of children with disabilities.

Do you believe that the Combating Autism Act provides enough money to find the cause, or causes, of autism and effective treatments?

A key aspect ofmy plan to address autism, which I unveiled in November, is to fully fund the Combating Autism Act, which the Bush administration has failed to do. Through this legislation, we can work to identify the causes of autism; provide funds for surveillance; and increase autism education, early detection, and intervention. As President, I will double investments in the National Institutes of Health’s efforts to identify the causes of autism, including possible environmental causes. I will expand the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network and I will create Centers of Excellence in Autism Spectrum Disorder Epidemiology. And I will require the Secretary of Health and Human Services to disseminate infonnation about signs of autism, early screening, and training for professionals who deal with young children through federal programs that reach children and families - such as the Child Care and Development Block Grant, Head Start, and the Children’s Health Insurance Program - and to pediatricians.

How much funding will you request to study potential environmental triggers of autism?

I am very concerned about the possible links between autism, the environment and other chronic diseases. Because there is so much we don’t know, I not only support increasing funding for the environmental research authorized by the Combating Autism Act, but I’ve also introduced legislation - the Coordinated Environmental Public Health Tracking Act - that would enable us to link disease surveillance to environmental infonnation, and investigate disease clusters. This bill would provide $100 million to monitor the environmental causes of disease. I have also proposed to increase the NIH budget by 50 percent over five years and to double it over 10 years.

As President, I will provide a total of about $700 million annually to address autism. That funding will go toward expanding research to identify causes of autism as well as creating a task force charged with investigating evidence-based treatments, interventions, and services; improving access to post-diagnosis care; providing teacher training; providing planning and demonstration grants for adults; creating a National Technical Assistance Center; and guaranteeing quality, affordable health care.

Do you believe there is an autism epidemic in the United States?

Yes. Today, one in 150 children rare diagnosed with autism, for a total of about 25,000 each year. In sum, about 1.5 million Americans and their families are affected by autism today. This national health crisis is costing the United States at least $35 billion each year. I have long been a strong advocate for individuals and families impacted by autism. I have cosponsored the Combating Autism Act and introduced the Expanding the Promise for Individuals with Autism Act, in order to ensure that Americans living with autism could have access as quickly as possible to evidence-based treatments, interventions, and services. When I am President, I will dramatically boost research funding for autism and support services for families caring for an autistic loved one.

What will you do to stop health insurers from discriminating against people with autism and their families?

As President, it will by my top domestic priority to provide quality, affordable health care to all Americans, including those with autism. My American Health Choices Plan will ensure that no one is denied coverage, refused renewal, unfairly priced out of the market, or forced to pay excessive insurance company premiums because ofpre-existing medical conditions or disabilities.

What will you do to assure that health insurers pay for promising new treatments and behavioral therapy?

My American Health Choices Plan will make quality health care affordable to every single American, including those with autism and their families. My plan will also create a Best Practices Institute that would work as a partnership between the existing Agency for Healthcare Research and Quality and the private sector to fund research on what treatments work best and to help disseminate this information to patients and doctors to increase quality and reduce costs.

Do you think vaccines should be investigated as a possible cause of autism?

I am committed to make investments to find the causes of autism, including possible environmental causes like vaccines. I have long been a supporter of increased research to determine the links between environmental factors and diseases, and I believe we should increase the NIH’s ability to engage in this type of research. My administration will be committed to improving research to support fact-based solutions, and I will ensure that the NIH has the staff and funding to fully explore all possible causes of autism.

What will you do to protect Americans, especially young children and pregnant women, from exposure to mercury through vaccines?

I will ensure that all vaccines are as safe as possible for our children by working to ensure that Thimerosal and mercury are removed from vaccines. I plan to fully invest in our research agencies so they can protect our children’s health, and so they can find the causes and cures for conditions such as autism.

What will you do to provide for the lifetime care that 250,000 to 500,000 current children with autism will need in the future?

Individuals with autism need assistance in many areas including education, employment, transportation, housing, health, and recreation throughout their lives. As President, I will provide support and resources to help them lead full, rich, productive lives. Under my plan, I will provide funding for a planning grant for states and a multi-year service provision demonstration grant program to increase access to appropriate services to adults living with autism, including job training, housing, and transition services for young people leaving school. I will also create a dedicated funding stream to help schools train teachers who work with children with autism spectrum disorders. With the autism prevalence rate among children now at 1 in 150, the need to identify and provide services for adults with autism will grow even more important in the coming years.

Would you support a large-scale federal study of the differences in health outcomes between vaccinated and vaccinated groups?

Yes. We don’t know what, if any, kind of link there is between vaccines and autism - but we should find out. The lack of research on treatments, interventions, and services for children and adults with autism is a major impediment to the development of delivery of quality care. We need evidence-based research on what works and what doesn’t in order to provide the most effective services for people with autism. In addition to a large-scale federal study, I will create a task force that would include significant representation from the autism community and would be charged with identifying gaps in evidence-based biomedical research, behavioral treatments, and services for children and adults with autism. The task force would present these findings to Congress and the Executive Branch and would make recommendations on how to make evidence-based treatments, interventions, and services available at the state and local levels. Once the task force has completed its work, I will provide funding to establish state-based demonstration grants to provide these evidence-based autism treatments, interventions, and services.

Would you support a federal right for families and individuals to choose for themselves which vaccines they will use?

As President, I will support efforts to ensure that vaccines are safe and effective, including independent reviews and large-scale studies. All Americans should have access to accurate and comprehensive information about vaccinations.

Are you satisfied that the federal vaccine approval process is free of conflicts of interests, transparent and rigorous?

I believe that we need independent, thorough, and comprehensive testing of all drugs, including vaccines, to make sure that they are safe and effective. I will ensure that the process of approving vaccines is based on science and research - not ideology or other motives. I will do everything I can to protect the health and well-being of American families.

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How Many Kids Have Autism?

August 1st, 2009

Several skeptical Numbers Guy readers have suggested I look into an alarming claim: that one in 166 U.S. children has autism.

That stat has received a lot of attention recently in advocacy materials, television ads and newspapers, including reports in the Dallas Morning News, the Chicago Tribune and the Savannah Morning News.

Autism experts told me that research broadly supports the estimate — with two major caveats. Those caveats help explain why the stat, while alarming, doesn’t support related claims by some advocates: that autism cases have been mushrooming with “epidemic speed,” and that more than one million Americans have autism.

First, the stat comes from figures published by the Centers for Disease Control and Prevention, based on a review of several studies that came up with estimates. But the CDC was careful to point out that the studies produced a wide range of results. Indeed, the headline-grabbing number focuses on the worst-case scenario: The CDC said the number of children with autism was somewhere between one in 500 and one in 166.

Second, the numbers take into account a relatively modern definition of autism that includes a full range of disorders. The changing definition of autism has played a major role in influencing statistics.

The cause of autism isn’t completely understood; a combination of genetic and environmental factors is believed to play a part, according to the CDC. Autism can usually be diagnosed before the age of three, according to the National Institutes of Health. Different from mental retardation, autistic disorders (as they are now defined) are characterized by impairment in communication and other social interaction. Mental retardation, characterized in part by a low intelligence-test score, can coincide with autism, but some people with autism have above-average IQs.

Those with “high-functioning autism” or with Asperger’s Disorder — distinguished by less-severe symptoms that may not become apparent until later in life — are likely to have an easier time of adapting to mainstream society, and therefore their conditions can be more difficult to diagnose. Other people with more severe cases of autism may require special education throughout school years and may have difficulty living independently as adults.

The broad definition used to arrive at the one-in-166 figure, which includes milder forms like Asperger’s syndrome, was published by the American Psychiatric Association in 1994 in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, known as the DSM-IV — the primary handbook for diagnosing mental disorders.

Eric Fombonne, an autism expert at Montreal’s McGill University, told me that while about a dozen studies around the world have found autism prevalence rates that would be in line with the one-in-166 estimate, that same research found that the majority of those people had a mild form of the condition.

The high profile of the one-in-166 number has been driven by increased public-awareness campaigns about autism from the government and advocacy groups. In 2004, the CDC, the Department of Health and Human Services, the American Academy of Pediatrics and other groups issued an alert (Autism A.L.A.R.M.) to doctors citing the 1-in-166 stat and advising on how to screen for cases. Since then, the CDC has reaffirmed the number in an online fact sheet (where it cited the broad range of estimates) and in a May report in its Morbidity and Mortality Weekly Report — the latter was based on parents’ self-reporting of their doctors’ diagnoses. Meanwhile, an even more recent U.K. study published over the summer in the Lancet found a rate of children with autism of between one in 110 and one in 70.

The CDC has increased research spending on autism by 80% since 2002, to $15.1 million this year. (Autism groups say the government is still spending too little on research and support for parents and adults with autism.)

A nonprofit autism-advocacy group called Autism Speaks put the one-in-166 stat front and center in a media campaign distributed by the nonprofit Ad Council. The organization has grown quickly since launching last year, and is distributing $15 million in research funds this year, spokeswoman Susan Arons told me. “We’re using what is a very well-known, well-accepted number,” she said. “We don’t want to be alarmists; we want to be accurate.”

The nonprofit Autism Society of America, one of the oldest and largest autism groups, has seen its budget grow steadily in recent years, to about $20 million this year, President Lee Grossman told me. He attributed the increased donations to greater public awareness.

“The one in 166 has been the biggest boon to awareness we’ve had,” said Marguerite Colston, director of communications for the Autism Society. “Those kinds of numbers stop people in their tracks, as they should.” Read More…

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1 in 4 Americans Believe Vaccines cause Autism

July 29th, 2009

Washington, Oct 4 (ANI): A new survey has shown that one in four Americans believe that autism is caused by childhood vaccines, even though scientists have denied any link.

The survey conducted by Florida Institute of Technology showed that nearly one in four people believe that because vaccines may cause autism it was safer not to have children vaccinated at all, while another 19 percent were not sure.

The scientists said that there is no evidence linking vaccines and autism, but the lingering fear is leading to fewer parents having their children vaccinated and a growing number of measles infections.

The fear arouse after a controversial 1998 British study showed a link between autism and the MMR vaccine, which at the time contained the mercury-based preservative thimerosal.

The study was later retracted by most of its authors and thimerosal was removed from all childhood vaccines in 2001, but responses to the just-completed survey show the public is still confused.

Fear of the unknown, coupled with anxiety over the growing incidence of the disease, may be leading people to draw their own conclusions, said Celeste Harvey, Florida Tech Assistant Professor of Psychology.

The survey includes responses from 1000 men and women, 21 years old or older, randomly selected from throughout the nation. (ANI)

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Parents Share Autism Lessons

June 25th, 2009

Monday, March 31, 2008; Page B03

Today, starting with its “American Morning” show, CNN is scheduled to air a story about Randy and Lynn Gaston, the Ellicott City couple raising triplet boys, all with varied degrees of autism. The network will also showcase the family Wednesday as part of its coverage for the first World Autism Awareness Day.

“The Gaston family, who didn’t even know what autism was when their triplets were born, show us how they are able to take care of Hunter, Nick and Zach, and the valuable lessons that they have learned along the way,” said Sanjay Gupta, CNN’s chief medical correspondent.

The Gastons and their triplets have become prominent figures over the past year. After a story about the family appeared in The Washington Post in June, the couple received hundreds of e-mails from around the world, many from people seeking solutions for affected family members.

“It created this giant ripple that just kept going,” said Randy Gaston, a database administrator for the Maryland Association of Boards of Education in Annapolis. “We’re still hearing from people from all over. It’s good to know you’re not the only ones experiencing all these problems.”

An estimated 35 million people worldwide are believed to have autism, a mysterious, lifelong neurological disorder that impairs communication and social interaction and is more prevalent in boys than girls. Its diagnosis has climbed rapidly; the federal Centers for Disease Control and Prevention estimated last year that as many as 1 in 150 children in the United States has autism or a closely related disorder.

The Gastons appeared on “Good Morning America” in late December and recently completed a public service message about the country’s first interactive online autism registry, http://www.ianproject.org, a research initiative run by Baltimore’s Kennedy Krieger Institute with sponsorship from Autism Speaks, a national advocacy group. The couple also have a literary agent and have prepared a book proposal, tentatively titled “Three Times the Love — Our Triplets with Autism.”

The Gastons happily report signs of progress in their boys, who are nearing their seventh birthday. The boys attend intensive-needs classes at Howard County public schools, where the couple say small classes, skilled teachers and instructional aides have helped in their success. Zachary is on track to be mainstreamed into a regular classroom for much of the school day, and Hunter’s vocabulary is expanding.

The biggest surprise came a few weeks ago from Nicholas, who hadn’t talked since he was a baby, when he babbled a few words. At home, Lynn was tending to Hunter when she felt a tug on her arm and heard a voice. She looked for Zachary but didn’t see him. Then she saw Nicholas looking up at her and repeating, “Momma.”

In tears, Lynn called Randy at the grocery store.

“I heard his voice,” Randy said. “It was so beautiful.”

– Susan DeFord

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NJ Bill Requires Autism Treatment Coverage

June 18th, 2009

TRENTON, N.J. (AP) - May 18, 2009 — New Jersey lawmakers on Monday will discuss a bill that would force state-chartered health care providers to cover certain autism treatments.

The treatments include physical, speech and occupational therapy. The measure would also include behavioral intervention, which advocates say is more expensive than the other three.

Autism New Jersey clinical director Suzanne Buchanan says one example of that treatment is teaching an autistic child how to make a sandwich. Each step is taught individually and paired with some kind of reward.

Parents of autistic children and other advocates are expected to testify before the Assembly Appropriations Committee.

Read More . . .

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Parents helped through Autism Maze

June 8th, 2009

Parents of children with autism are being shown how to find the services they need at a workshop in Hobart today.

The Federally-funded sessions aim to help parents gain a better understanding of their child’s condition and introduce them to other parents in a similar situation.

Facilitator Rose Clark has a 21-year-old son with a moderate autism disorder.

She says having an autistic child can be a very isolating and frustrating experience because services are not easy to find.

“It’s learning from each other, finding out what’s out there, and the other thing is finding out what’s new, what’s changed and often service providers change, the funding changes,” she said.

“So it’s a never-ending mine field of swapping information.”

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Erasing Autism

June 1st, 2009

Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?
By Claudia Kalb | NEWSWEEK
Published May 16, 2009

It’s spring in Washington, and Ari Ne’e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne’eman is a master networker, a guy you’d think was born in a campaign office and bred in the halls of the Capitol. He’s fluent in policy-speak and interacts seamlessly with high-level officials (he’s just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He’s formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne’eman—he’d mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne’eman crazy to sit in it. “I’d wince because I’d think about how it would feel to get that under your fingernails,” he says. I think I see him shudder at the memory.

Ari Ne’eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne’eman’s velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn’t want anybody to mess with or, God forbid, cure his Asperger’s. It’s who he is, who he’s always been. It’s why he’s had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York’s American Museum of Natural History and announced, “That’s a pterodactyl.” From there he fixated on baseball, reciting players’ names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne’eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne’eman had other plans. “Ari made us listen to Supreme Court oral arguments. It was brutal,” DeMarzo tells me. He was outnumbered—how’d he win? I ask. DeMarzo laughs. “Ari always wins,” he says.

He certainly puts up a fight. Ne’eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. “We’re having a nation-al conversation about autism without the voices of people who should be at the center of that conversation,” he says.

Ne’eman’s network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne’eman and others are willing to stir un-rest. “Ari’s very straightforward,” says Lee Grossman, head of the Autism Society of America, who supports many of Ne’eman’s efforts. “He tells it like it is from his perspective.” Ne’eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy “ransom notes” ad campaign created by New York University’s Child Study Center to raise awareness about autism. One said, “We have your son” and are “driving him into a life of complete isolation.” It was signed “Asperger Syndrome.” Ne’eman was appalled. “There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can’t tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne’eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne’eman had a surprising outlook on this and figured he’d have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they’d welcome better, more targeted treatments. But the new genetic advances concern Ne’eman. He doesn’t believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to “eugenic elimination.” If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

Read More . . .

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Connecticut Senate endorses Autism Insurance Coverage

May 25th, 2009

On Friday May 15, 2009, 2:52 pm EDT

HARTFORD, Conn. (AP) — The Connecticut Senate has endorsed legislation requiring group health insurance plans to cover diagnosing and treating autism in young children.

The state Senate approved the measure unanimously Friday, sending it to the state House.

Its supporters say it is unfair for families to pay hefty insurance premiums, yet be denied coverage for autism spectrum disorders.

Possible Autism Insurance?

Possible Autism Insurance?


It can cost thousands of dollars to diagnose a child with autism spectrum disorders, and much more for treatment. The bill is expected to affect tens of thousands of Connecticut children.

At least 10 other states have enacted similar legislation

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Growing Old with Autism

May 22nd, 2009

(Times, CNN)

Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con’s trick of lashing out before anyone could take a shot at him.

Noah’s autism has been marked by “three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others,” according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today’s children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society. Read More …

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