Studying Autism Isn’t Enough

Discussion in 'General Parenting' started by Sheila, Nov 25, 2006.

  1. Sheila

    Sheila Moderator

    Studying Autism Isn’t Enough

    Published: November 21, 2006

    Bethesda, Md.

    WITH the recent Senate passage of the Combating Autism Act, the House is now poised to approve landmark legislation to help scientists understand the causes and characteristics of autism — a spectrum of neurological disorders affecting more than 1 in 200 children in the United States. If the House does as we hope and passes the act, the National Institutes of Health and related health research agencies will finally begin to devote the magnitude of resources — nearly $200 million a year — commensurate with the severity and prevalence of this terribly devastating set of conditions.

    The research emphasis of the act is appropriate, given how little is still known about the causes and the physiology of autism spectrum disorders, as well as the means by which medical treatments can reduce autism’s severity if applied early enough. Basic questions like whether the frequency of childhood vaccines today contributes to autism are still unresolved.

    As parents of a child facing these challenges, we applaud those lawmakers and fellow parents who have done so much to promote this and other initiatives. But research is not enough. We as a nation must also begin to focus seriously on treating those children who are already afflicted. At present, we are failing miserably to do so.

    In America, you have to be lucky or rich to get proper care for your young autistic child. Treatment regimens typically cost more than $50,000 annually for preschool children — one reason proven methods are available to perhaps only 10 percent of afflicted children during those crucial years. In a few states, like New Jersey, educational systems provide therapy to preschool kids, but resources vary from county to county. Here in Maryland, our 4-year-old daughter has received an hour or two of publicly provided help a week; studies show that ideally up to 40 hours of intensive intervention are required. A handful of states, including Maryland, have established a Medicaid autism waiver to allow parents of severely afflicted children to obtain relevant services independent of income.

    But limited funds constrain those services even where they exist. Earlier this year, we put our daughter on Maryland’s autism waiver waiting list — and were told that she was No. 1,519, corresponding to an expected delay of several years before services would be available.

    We are still lucky. Thanks to the farsightedness and generosity of one of our employers, most of the money needed for our daughter is provided via insurance. But among major American corporations, only Microsoft, Home Depot and two or three others offer comparable benefits. Virtually no private health plans do. The Department of Defense has some, though it has been introducing bureaucratic obstacles to obtaining coverage that could make it inaccessible for most as a practical matter.

    If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it’s also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years — while a lot — is only one-tenth the expected cost of supporting someone for a lifetime on the dole.

    Intervention is costly because it is essentially one-on-one. Youngsters with autism spectrum disorders are hard to engage. They do not closely observe their environment or naturally imitate the actions of others. Nor do they tend to seek out human interaction and communication. Overcoming these barriers requires a highly individualized and intensive program. There is broad consensus, as reflected in previous studies by the National Academy of Sciences and American Academy of Pediatrics, that early and intensive intervention is critical. The core of most intervention plans, it is generally agreed, should be a cognitive method engaging the child’s intellect and emotions and sociability.

    Insurance companies and others often deny coverage by arguing that treatment methods are experimental, but that assertion no longer holds water. Studies now show that 40 percent to 50 percent of toddlers undergoing intensive Applied Behavior Analysis, one of the best-known methods, can be mainstreamed in regular classrooms without personal aides by the time they reach school age. (The figure is close to zero for children not given special care.) Most of the other 50 percent to 60 percent make notable progress too. The applied behavior method breaks down learning into simple steps with one-on-one tutoring, in a manner somewhat akin to the way Helen Keller was taught. Other applied behavior approaches involve reinforcing appropriate behaviors in daily life and creating opportunities for social interaction.

    In the early 1990s, Dr. Stanley Greenspan developed a competing method. Commonly known as Floortime, it focuses on core autism deficits — emotional, social and imaginative abilities — by harnessing a child’s natural interests and tailoring interactions to specific skills and challenges. It involves interactive play, as well as activities that vary a child’s environment to teach language concepts in a realistic way.

    At a conference last December at the Brookings Institution, Dr. Greenspan, while making a strong case for Floortime, also recognized applied behavior’s potential for children on the autism spectrum. As parents using a blend of approaches with our child, we have been encouraged to see that they increasingly draw on one another’s insights and activities. (A third cognitive method, called relationship development intervention, also focuses on core autism deficits.) So while vigorous debate continues over optimal therapy, there is no longer any doubt that the main methods work.

    Once the Combating Autism Act is passed, and we hold out hope for the next generation, it is time to rescue the children who already are afflicted. Our options range from mandating that insurance companies cover therapies documented to work, to trumpeting the example of places that do provide coverage in the hope others will follow, to expanding autism Medicaid waivers.

    The autism community is encouraged by the recent attention to this profound set of disabilities. But as a nation, we have been letting down 25,000 more children every year. Good will is not enough.

    Cathryn Garland is a director at Discovery Communications. Michael O’Hanlon is a senior fellow at the Brookings Institution.
  2. Sheila

    Sheila Moderator

    109th Congress
    Public Laws | Pending Legislation


    S. 843, H.R. 2421, H.R. 5940
    Autism is a biologically based neurological disorder that causes severe difficulties with communication, language skills, and social interaction. Nearly 1 in 250 children born each day will be diagnosed with autism or an autism spectrum disorder.

    In 1997, at the request of Congress, the National Institutes of Health (NIH) formed the Autism Coordinating Committee (NIH/ACC) to enhance the quality, pace, and coordination of NIH efforts to find a cure for autism. Since then, NIH/ACC has been instrumental in promoting research to understand the causes of and find a cure for autism. NIH/ACC consists of five NIH Institutes: the National Institute of Mental Health (NIMH), National Institute of Child Health and Human Development, National Institute of Neurological Disorders and Stroke, National Institute on Deafness and Other Communication Disorders, and National Institute of Environmental Health Sciences.

    During the 106th Congress, the Children’s Health Act of 2000 was signed into law as P.L. 106-310. The Children’s Health Act mandated the establishment of an autism research network consisting of at least five Centers of Excellence in autism research. In response to this mandate, the five Institutes that make up NIH/ACC have implemented the Studies to Advance Autism Research and Treatment network program. These Centers of Excellence conduct basic and clinical research into the cause, diagnosis and early detection, prevention, control, and treatment of autism, including research in the fields of neurobiology, genetics, and psychopharmacology. The Children’s Health Act also mandated the establishment of an Interagency Autism Coordinating Committee (IACC) to coordinate autism research and other efforts within the U.S. Department of Health and Human Services (DHHS); NIMH was designated as the lead Institute for this activity.

    Provisions of the Legislation/Impact on NIH
    S. 843, the Combating Autism Act of 2006, as amended and passed by the Senate, would:

    Require the Director of NIH to develop and implement an annual strategic plan for research related to autism spectrum disorders. In the development of the plan, the Director would be required to take into consideration the recommendations of the IACC. In addition, the Director would be required to submit an annual report to Congress that includes the strategic plan and a description of the expenditures of NIH research activities related to autism spectrum disorders in the previous fiscal year.
    Reauthorize the Centers of Excellence program by expanding the list of areas in which the Centers must conduct research and requiring the establishment of Centers of Excellence in Environmental Health and Autism. The bill would allow these programs to be consolidated if consolidation would improve program efficiencies and outcomes.
    Reauthorize the IACC, increase its membership to allow representatives of leading autism research and service organizations and individuals with autism and other developmental disorders to become members, and expand its responsibilities to include making recommendations to the Director of NIH in the development of the NIH strategic plan for autism.
    Require the Secretary of HHS to establish and provide funding for the collection, storage, coordination, and public availability of data generated from public and private autism research partnerships. It would also establish a program under which tissue samples, genetic material, and biological materials would be available for research.
    H.R. 2421, the Combating Autism Act, would increase research, screening, intervention, and education related to autism by:

    Requiring the Secretary of Health and Human Services (HHS) to establish an IACC to coordinate all efforts within DHHS concerning autism
    Requiring an annual report to Congress that would include autism research funding amounts for each Institute and provide a progress report on the funding recommendations in the Autism Research Roadmap and Matrix of the IACC
    H.R. 5940, the Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006, would require NIH to conduct a comprehensive study to 1) compare health outcomes, including risk of autism, in vaccinated and unvaccinated populations and 2) determine whether vaccines or vaccine components play a role in the development of autism spectrum disorders or other neurological conditions.

    Status and Outlook
    S. 843 was introduced by Senators Rick Santorum (R-PA) and Christopher J. Dodd (D-CT) on April 19, 2005, and was referred to the Senate Committee on Health, Education, Labor and Pensions (HELP). On July 19, 2006, the HELP Committee by voice vote reported out S. 843, as amended by the Committee with a Committee substitute bill, favorably to the full Senate. On August 3, the Senate passed S. 843, as amended by the Senate, by unanimous consent.

    H.R. 2421 was introduced by Representatives Mary Bono (R-CA) and Diana L. DeGette (D-CO) on May 18, 2005, and was referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

    H.R. 5940 was introduced by Representative Carolyn Maloney (D-NY) on July 27, 2006, and was referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.
  3. Stella Johnson

    Stella Johnson Active Member

    Very interesting article. Thanks for sharing.

  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Interesting article-thanks Sheila!
  5. OTE

    OTE Active Member

    I think any new money for research is promising. I think the commentary is right except that I have always argued, and employed with my own child, the idea that parents can be therapy aides as well. I just read Emileislosts's post on the advice that the psychiatrist gave her. While I agree with the technical content therein most of us with Pervasive Developmental Disorder (PDD) kids who have been in therapy could make up a similar list for Pervasive Developmental Disorder (PDD) kids. And many of us have taken it further. I, for one, have been very lucky having lived in NJ when mine was very young. Mine was in an autism school that cost my school district over $40,000/yr which they happily paid. But I take the point that in many, if not most, areas of the country that isn't available. I spent many, many hours both in the classroom and in his one on one therapy sessions outside of the classroom. I was blessed with an opportunity to spend 4 or 5 days in full time classroom training with an expert. in my humble opinion those blessings came to me not only by the grace of God but by my persistence is searching for help for my child. I wish that more parents felt empowered, that more understood that they are the primary therapists given the amount of time they spend with their children. That the time they spend learning about Pervasive Developmental Disorder (PDD) and therapy, and working with their child, is the most predictive indicator of successful outcome for the child (in many professional opinions). How sad that the "profesionals" who wrote this failed to include the idea that parental education and training is an important, if not THE critical, component in a child's later ability to function. How sad that the "professionals" here (who primarily are not Pervasive Developmental Disorder (PDD) experts anyway) are pushing on parents the notion that a diagnosis of Pervasive Developmental Disorder (PDD) is the death of hope for their child, that the outcome cannot be changed by parents but only by professional treatment.
  6. witzend

    witzend Well-Known Member

    We have the highest rate of autism in the nation in the Pacific Northwest. It turns out that our rivers are full of benzyne. They are looking at that as a cause, now. I agree that we need to take care of the children we have with autism, and we need to study what causes it as well.
  7. Fran

    Fran Former Site Owner

    Thanks Sheila.
  8. susiestar

    susiestar Roll With It

    Great article. I wish that our schools could/would do more. I wish that I felt encouraged to spend time in the classroom with my oldest when he was in the early grades.

    And I sincerely hope that someday our society will recognize that often motivated parents ARE the best therapists/aides for our kids. And provide some sort of financial backing so that those of us who are willing to be trained can stay at home with our kids, working with them. I know that much of what I did instinctively happened to be the right thing for B, but I fought much pressure from family and society over these things.

    Someday we will have a professional mother status, with full backing from our country in every way. in my humble opinion it would be much more cost effective in the long run. For all our kids!