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The $72,000 Question

How much are behavioral and medical treatments costing your family? These costs, and the fact that many therapies used to help individuals with ASD do not have strong scientific support of their effectiveness, are the subjects of a six-page feature article in the October issue of Scientific American.

In the article, author Nancy Shute reviews the myriad therapies that are frequently used by families in search of help for autism’s challenging symptoms. One therapy with consistent evidence-based support through randomized controlled clinical trials is early intensive behavioral therapy therapy. As the article noted, a study published in Pediatrics in November 2009 and led by Autism Speaks’ Chief Scientific Officer, Geraldine Dawson, Ph.D. underscores the benefit for intensive early behavioral intervention in improving the outcomes of young children on the spectrum. Unfortunately this type of intervention can cost families over $33,000 per year and that is not quite half the total costs incurred by families. A Harvard School of Public Health report places the average total medical and non-medical costs of autism at approximately $72,000 per year.

Autism Speaks was highlighted several times in the article.  First, the substantial contribution of private foundations to funding autism research was noted– $79 million in 2007.  Second, an analysis of Autism Speaks’ research investments showed that about 27% of our research funding went to investigating treatments.  The search for causes received 29% and basic biology received 24%, with the remaining 9% of funding going to research to improve diagnosis.

Finally, two clinical programs of Autism Speaks were featured.  The Autism Treatment Network (ATN) was highlighted for its one-of-a kind registry of children on the autism spectrum and the various medical conditions that accompany autism such as sleep disturbances and gastrointestinal disorders.  The ATN enables network clinicians to identify best practices in medical care for autism. These practices are released as published guidelines for used by practitioners everywhere.  The Autism Genetic Resource Exchange (AGRE) was also featured along with one of the founding scientists and ongoing advisors, Daniel Geschwind, M.D., Ph.D. As we learn more about the genetic risk for ASD, this registry of families with at least two affected children, becomes an increasingly important resource for scientists and clinicians.  AGRE families participate in multiple surveys, provide samples for genetic analysis and creation of cell lines that can be shared with other researchers seeking to understand the biology of autism and evaluate new treatment possibilities.

Now, back to the $72,000 question.  Autism Speaks is in a unique position with its focus on science and research in conjunction with a strong government relations team.  Easing the financial impact of autism requires insurance reform, which is underway in many states.  However, we need treatments that have withstood the rigors of scientific testing to put forth for insurance coverage.  The successful interplay between scientifically-validated treatments and insurance policy is a long and arduous road but one that Autism Speaks is uniquely poised to travel.

  1. Katie Wright
    October 5, 2010 at 12:55 pm

    Really important points. Autism is emotionally and financially devastating.

    My husband I spent every cent we had on the best early intervention (ABA, speech, OT) possible but our son made no improvement because his underlying medical problems were not addressed. For some children even the best ABA is ineffective because that child needs a physiological intervention.

    Parents are on their own to figure this out, find competent medical help and pay for this help. Helping kids get the earliest medical attention possible should be a top priority. It is easy for the “Scientific American” and others to criticize families for going alternative route. They are not living with a miserable child in pain. If mainstream medicine offered more actual medical interventions for autistic kids families will use it.

  2. Mary
    October 5, 2010 at 2:23 pm

    I had to quit my job it seemed the only way to get help for my son, get a part time job. So he can have Medicaid. My insurances only aloud 3 visits a mouth to a specialist or concealer. Hospitals stays they only pay half. It was hard cutting back but he needed help. I have heard concealers and other not like to name, saying things like it would be easy-er for couples to divorce so the child can get help. Because they made to much for government or state to help, and the insurances did not help either. I have a friend with two children who have autism and they had to, too help there children get the therapy they need. Has any one come up with a idea to help.

  3. Katie Wright
    October 6, 2010 at 4:18 pm

    ATN needs to be more visible and fund more diverse researchers- not ONLY those affliated with an
    ATN participating hospital. We will never get anywhere if we only fund the same 5 people over and over again.

    AGRE’s multiplex family data has not been transferable to the majority of singleton families. This isn’t the way forward.

  1. October 5, 2010 at 12:06 pm

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