Home > Got Questions?, Science, Uncategorized > How does research help my child today?

How does research help my child today?


 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

  1. BJ
    November 25, 2011 at 11:18 am

    When are adults with autism spectrum going to receive appropriate accommodations for communicative disorders inside a court room or whith proceedings involving settlement cases of abuse.
    We all know that we have a constitutional right to an inpartial jury in any case whether is a civil or criminal case but if an adult in the autistic spectrum is told:
    “NO jury wants to hear that a teacher hit you” or
    “In this type of case you have a 90% chance that you will loose if you pick a jury”

    How do you think people in the autism spectrum may receive or perceive this mere attorney’s opinion as?

    As concrete fact or as a mere opinion?

    Words spoken that people in the autistic spectrum hear and receive are not perceived as mere opinions unless the person sending the message states as so.

    This insensitivity of spoken words does much harm and ultimately alters the individual in the autism spectrum perception of what their constitutional rights are and ultimately causes a change of route in their decision making and that to opt out for a jury because they were told by their own attorneys in some many words the jury will be a partial jury!..

  2. Katie Wright
    November 28, 2011 at 10:22 am

    I agree that the insurance bills are great for our families. It is time that our kids stopped being discriminated against. There is no question in the world that ABA and early intervention are needed after a diagnosis. Any politician who says otherwise is basing opinions on dated information or has been heavily lobbied by the insurance industry.

    That said we need AS to focus more research $ on here and now interventions. Research on the importance of early diagnosis and intervention is complete. This area of research has been saturated w/ $. The problem now is really access to these services. We need AS to focus on biomedical interventions. Unfortunately a fair % of kids make minimal progress w/ behavioral interventions alone. This is very under-researched population.

    We need to see meaningful clinical trials rather than dozens of genetic databank studies. AS has studied oxytocin but I want to see research for treating ASD/Lyme, ASD/PANDAS, GI disease, autoimmune dysfunction.

  1. December 1, 2011 at 7:59 pm

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