Skip navigation

no spam, unsubscribe anytime.
Skip navigation
Goal: 30,000 Progress: 525
Sponsored by: The Autism Site

Tell the National Institutes of Health (NIH), our biggest funder of autism research, to provide more funding into researching lifespan issues.

Research on lifespan issues — things that concern adults on the spectrum — has historically been severely understudied. According to the Interagency Autism Coordinating Committee's 2013 report on autism research, only one percent of research funding was granted to lifespan issues, [1] making it the most neglected area of autism research.

The priority of most funders? Looking into the biological mechanisms behind autism (32 percent in 2013). While this is an important area of study, it is not what the autism community needs most.

According to a poll on The Autism Site Blog that consisted of 473 votes, most responders (28 percent) thought research on lifespan issues needed to take priority. [2] Biological factors came in dead last, with just under 10 percent of voters favoring this area of research. Many other advocates outside of this poll also believe that we need to focus more on lifespan issues in our autism research ventures. [3]

This is not surprising. Society is facing a wave of autistic adults who are aging out of the system, but we don't have the information we need to help them survive and thrive. No wonder one of the biggest fears of parents centers around the future: "What will happen to my child when I am gone?" they wonder and hardly dare to think about.

This needs to change. The National Institutes of Health (NIH) has historically been the United States' biggest funder of autism research; as such, they are in the best position to help us sort out this issue. If they truly care about helping autistics, they need to step up to the plate and prioritize what the autism community itself really needs.

Sign Here






Dear National Institutes of Health (NIH),

For years now, you have been the largest funder of autism research. We thank you for this, as you have helped contribute to our knowledge of a very misunderstood disorder.

However, we are immensely concerned about the overall lack of funding that has gone toward researching autism lifespan issues — issues that the Interagency Autism Coordinating Committee (IACC) has cited as "urgent." In 2013, only one percent of overall research funding went toward this venture, whereas much more funding was granted to research that has less practical importance to the autism community, like biology.

However, the autism community at large is crying for more knowledge on lifespan issues. Children with autism are growing up, and parents are fretting about their futures. As more and more of these children reach adulthood and phase out of the system, research on lifespan issues takes on even more critical importance.

Yet many organizations donating to autism research, the NIH included, continue to place emphasis on research that the autism community does not need nearly as desperately. But that does not need to be the case. As the largest funder of autism research year after year, you are in a prime position to change this.

Therefore, we implore you to funnel more research funds into lifespan issues. In doing this, you could greatly benefit individuals on the spectrum and their families. While learning more about autism's biology for future populations is important, there are also millions of people who are here right now and in desperate need of your help.

Thank you for your consideration.

Sincerely,

Petition Signatures


Jul 30, 2018 Dawn Kromer
Jul 18, 2018 Danielle Osterweil
May 22, 2018 Aliyah Khan
May 15, 2018 Kay Theriault I'm an Aspie who was diagnosed as an adult--in middle age. There are very little in the way of supports or help for someone like me, who's fallen through the cracks most of life. We need help too!
May 13, 2018 Laurie Nicoletti
May 12, 2018 (Name not displayed)
May 5, 2018 (Name not displayed)
May 3, 2018 JoAnn Evans
Apr 23, 2018 Tina Behla
Apr 22, 2018 Ananya Boonyarattaphun
Apr 20, 2018 Kay Fisher
Apr 20, 2018 (Name not displayed)
Apr 20, 2018 Roxana Moya
Apr 20, 2018 SANDRY SAMPER
Apr 20, 2018 Albeniz Pérez
Apr 20, 2018 Sanand Dilip
Apr 20, 2018 Liliana fiorinl
Apr 19, 2018 Antoinette Gonzales
Apr 13, 2018 Maria Simao
Apr 7, 2018 Lisa vasta
Apr 5, 2018 Richard Bosboom
Apr 3, 2018 Stephanie Basile As the parent of an adult with autism, these issues are what keep me up at night.
Mar 31, 2018 (Name not displayed) https://www.liveaction.org/news/feminists-never-wanted-abortion/
Mar 31, 2018 Pamela Seely
Mar 29, 2018 Anna-Maria Fitzpatrick
Mar 8, 2018 (Name not displayed)
Feb 28, 2018 Melissa Phillips I can not say enough abou this issue, when an autistic child reaches adulthood, he or she appears to be forgotten. Well, I am trying to receive housing with no help from the community, government or anyone who claims to advocate for special needs.
Feb 27, 2018 Michael Eddie
Feb 26, 2018 John Langham
Feb 25, 2018 Deni Gereighty This is important as when the parents die, whpo will cope with these growing numbers of people?
Feb 25, 2018 Jeanine Smegal
Feb 25, 2018 Ertie Evangelista
Feb 25, 2018 Eliza Pearl Duncan
Feb 24, 2018 Kathryn Lewis Parmentier
Feb 23, 2018 (Name not displayed)
Feb 23, 2018 Keish Hale
Feb 22, 2018 Patty Langford
Feb 22, 2018 Karin Cohen
Feb 22, 2018 Teresa Foster
Feb 22, 2018 Teresa Foster
Feb 22, 2018 Teresa Foster
Feb 22, 2018 Yosef Robinson I'm quite fortunate as an autistic spectrum adult, but so many others aren't nearly as fortunate.
Feb 21, 2018 Gaya Covington
Feb 20, 2018 Brenda Garver
Feb 20, 2018 Laura Taylor
Feb 13, 2018 Bonnie Steiger
Feb 11, 2018 Richard Bosboom
Feb 11, 2018 Richard Bosboom
Feb 10, 2018 Randall Bong
Feb 6, 2018 Richard Bosboom

back to top

Just Believe Dragonfly Lightweight Hoodie
Share this page and help fund therapy: