Home > Government Relations > The Tide is Changing: Why the Autism Community Needs Insurance Reform

The Tide is Changing: Why the Autism Community Needs Insurance Reform

Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.

When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers

1990                1 in 2,000
2000                1 in 500
2004                1 in 166
2007                1 in 150
2010                1 in 110

After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:

  • Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
  • Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
  • Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.

As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.

Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.

This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.

But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.

But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.

A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.

On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


  1. July 9, 2010 at 12:44 pm

    For those interested in the actual figures, a prevalence of autism of 1 in 150 was found in the US in individuals born between 1988 and 1995 (Bertrand et al., 2001).

    The 1 in 150 prevalence of autism found in the 1st multi-state CDC study was found in individuals born in 1992 (ADDMN, 2007).

    A 1 in 86 prevlance of autism was found in the UK in individuals born in 1990 and 1991 (Baird et al., 2006). Using different ascertainment methods, approximately a 1 in 175 prevalence of autism was found in the same cohort in an earlier study (Baird et al., 2000). That is, using different ascertainment methods (but the same diagnostic criteria, and overlapping instruments) doubled the apparent prevalence of autism within the same cohort.

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