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Operation: Research Autism

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

The military has a weapon in the war on autism that few people know about even in our own community – a Congressionally Directed Medical Research Program specifically focused on research of previously overlooked medical issues, including autism spectrum disorder.

As a taxpayer, you contribute your two cents to this program – literally – every year.

The Department of Defense Autism Research Program (ARP) was established in 2007 after parents lobbied Congress for years. Lucky enough to be selected as a stakeholder, I participated in shaping the vision and mission of the program in March 2007.The program has a two-tiered review process with proposal evaluation by both a Scientific Review Panel (SRP), which reviews scientific method and validity,and Integration Panel (IP), which primarily focuses on programmatic impact to the community and issues final recommendations for funding projects. My service on the IP has allowed me to be intrinsically involved in funding scientific proposals for projects ranging from those designed to gather preliminary data that may lead to new breakthroughs one day up to complex clinical trials for new treatments or therapy modalities.

Since its inception, ASDRP has funded 66 projects investing $31.9 million in autism research.

What makes this program unique is my ability to contribute my two cents in other ways.  In this program, consumers participate throughout the entire process – shaping the program and reviewing the scientific proposals with an equal, respected voice regarding innovation and impact. More importantly to me, consumers fully participate in distribution of funds – advocating expenditure in areas the community wants to be researched – now.  Furthermore, if the SRP that a member of the IP believes has promise of significant impact, an IP member can rescue and champion it.

While science keeps plodding along trying to determine the etiology of autism, many parents simply want to find basic answers the quality of our children’s lives now by addressing their behavioral and physical health gastrointestinal, sleep and seizure issues can change the whole family’s life.

Comprised of scientists, clinicians and consumers from a variety of backgrounds, the integration panel has a unique opportunity for candid, civil conversation about the research direction of this program. Everyone has learned to appreciate different perspectives.   For example, robotic technology is cool. But most parents don’t want precious research dollars expended on robots to work with our children – at least not while there are still humans around.

The main thing I’ve learned on this panel is that the march of scientific progress not only requires significant money – it also takes a lot of time.

On April 7, 2000, I attended a meeting at the National Institutes of Health with around 250 parents – most had very young children.  Fifteen minutes into the presentation, a brave mom stood asking when we could expect some answers. The speaker proudly announced from the podium that we could expect some good answers in 25-30 years.

All 250 of us got up and walked out of the meeting. I walked out because my son Liam was four at the time.  The fact that they would not have answers for him until he was 34 seemed ridiculous. They didn’t need to waste time telling me what autism was. They needed to get back to work.

Eleven years later, after serving on the DOD panel, now I understand what she meant.  Doesn’t make it easier but now I know firsthand the grant funding process takes years. The actual research takes years after that and then potentially waits even longer for acceptance for publication.

ARP Funding Timeline – Fiscal Year 2010

Fall of 2009 – $7.1 Million allocated to the ARP by United States Congress.

December, 2009 – IP meets to review vision and mission of program, research area focus and funding mechanisms.

February, 2010 – Program announcements and requests for proposals posted.

Late April, 2010 – Pre-proposals received from investigators seeking funding.

Late May, 2010 – Pre-proposals screened by IP determining invitees for full proposal submission.

June, 2010 – Invitations for full grant submission mailed.

July, 2010 – Full grant proposals received, prepared by program staff for review by SRP.

September, 2010 – SRP meets to review grant applications.

Late October, 2010 – Program staff organizes and prepares SRP reviews for IP

November 30, 2010 – IP approves $7.1 Million in funding on accepted grant proposals.

January, 2011 – Grant recipients are notified of award and must advise program staff if they accept funding or another source was found.  If recipients turn down grants, alternates are contacted in rank order for funding opportunities so every dollar is effectively spent.

February, 2011 – All money is invested. Grant recipients must then demonstrate that approval at their institutional levels to work with human subjects or on human tissues.

September, 2011 – Grantees are anticipated to receive their first funding – funding that was first allocated in 2009.

September 20** –  **Wait two, three or four years for the research projects to conclude and another couple for researchers to publish their findings in a paper and it’s easy to see why the process begun on that cold wintery day in Annapolis in December, 2009 might not finish until December 2015, or beyond.

As frustrating as this glacial pace is to parents watching their children suffer day in and day out, just because you cannot see it does not mean research isn’t being done.  It does not mean that researchers are not working every day to validate treatments and therapies that have come from your complaints or ideas you developed in your own homes.

I am very proud of the science that the ARP has funded.  We have stayed true to areas of research initial stakeholders expressed interest in 76% of the time.  Only 12% of funding approved is for scientific proposals replicated in other research programs and the remaining 12% of the funded proposals are highlynovel ideas that are not currently funded by governmental, private or non-profit agencies.

The CDMRP has a number of other research programs in it that have not only provided the world with cutting edge research but have grown exponentially since their inception. For example, Congress appropriates over $100 Million annually to the Breast Cancer Research program.

Congress appropriated another $6.4 Million to the ARP in April 2011.  As a community, we could grow that figure for this innovative program if we just act.  Learn more about the ARP and register at Autism Votes so you can be first to contact your Congressman and Senator to let them know we want their support to increase funding next year.

  1. RK
    May 4, 2011 at 6:25 pm

    It’s about time. I know when I was at Beale AFB, I never knew so many autistic kids. There were so many there considering there was not a lot of people on the base

  2. May 4, 2011 at 7:22 pm

    Excellent rundown on the nature of autism research. My son is 25 and my biggest concern is who will watch over him when I am gone. I hope we have some communities in place that will be not only fully aware of autism by then but also programs to make sure he has both independence and security.

    • Anita
      May 5, 2011 at 7:34 am

      Mine is 20 and I’m right there with you!

  3. ika
    May 4, 2011 at 9:15 pm

    everybody keep talking about all these wonderful programs that help our autistic children but i have put on a strong fight to get my son the help his needs and still fighting. i cant get a decent doctor to treat my son for autism but steadly pushing me to accept diagnoses of mentally retarded, adhd,oh yea mood disorder where i almost have to go into a defensive stance and dominating eye glare has im asking for tratment for autism. i have been dismiss has a non compliant parent and only get pushed medication treatment that make my son useless and depress. im desperate to help my son but feel like the agencies and trying to access the help seem like a hopeless fight. can some one guide me with useful knowledge.

    • May 5, 2011 at 1:17 pm

      Ika, the best thing you can do is work with him yourself – each and everyday. Play with him, go for walks, speak to him as you would any other child but softer, gentler. Smile and show a happy mom – let him be comfortable in knowing that you are there for him and will keep him safe. There are no magic bullets – just lots of interaction. Feel joy and celebrate the little accomplishments – after all they lead to some very big ones. Become an expert – on your son! Knowing him, really knowing him, will be the best weapon you have when it comes to IEPs and whether or not to give medication. My son was diagnosed at a time when autism was rare – there really was no one else but me. For my child (moderate to severe autism) to succeed I needed to be the one who worked with him, fought for him and defended his intelligence and he did succeed- graduated with honors. Stay focused – you are making a big difference in his life even if he can’t tell you that. Happy Mother’s Day!

  4. Katie Wright
    May 6, 2011 at 4:00 pm

    Thank you Shelley!!!
    As always you make excellent points.

    The federal govt moves so slowly. However, they were somehow able to get into high gear w/ HIV in the 80s and 90s. We need to pressure the govt to speed up this process by eliminating the long waits between meetings and pressuring the govt to get the grant recipients their $ asap- not months and months later.

    The only absolute is the time it takes to do the study.

    Also the grant recipients need to get the work done on time. I see way too many projects at AS take 2x as long as contracted. Not OK.

  1. May 4, 2011 at 8:46 pm
  2. May 5, 2011 at 9:55 am
  3. May 6, 2011 at 1:59 am
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