News and Notes from The Johnson Center
Participate in Autism Research
JCCHD | Sat, April 02, 2016 | [Autism Treatment][Community][Q and A ][Research]April is Autism Awareness Month, but here at The Johnson Center we are calling for an Autism Action Month!
When you live in or work with the autism community, you experience the highs of celebrating the milestones a child reaches and you experience the lows of seeing a child or a family struggle.
One Johnson Center team member recalls an experience that has stayed with her: she once received an envelope with a handful of dollars and a baggie of coins in it. These were funds that a child’s classmates had collected to help him get the feeding therapy he needed. A class of 7th graders in New Jersey donated their weekly allowance for their classmate in need, doing whatever they could to help.
Not everyone has an allowance to donate, but everyone can make a difference. One great need in the autism community is volunteers to participate in research, including people who do not have autism (to serve as controls). One of the biggest challenges our research assistants face is not triple-checking data or perfecting spreadsheets for the statisticians, but finding people to participate in studies. While 90% of children with cancer are enrolled in clinical trials, only 5% of children with autism participate in research.
Here’s the great news - all children can participate. A participant does not need to have an autism diagnosis in the family to do something. Research studies often need typically developing children for comparison purposes, as well as children on the autism spectrum.
For Autism Action Month, check out some of the studies you or your children can enroll in to help the autism community. In addition to the studies at The Johnson Center, you can participate in autism research TODAY, without even leaving your computer:
INTERACTIVE AUTISM NETWORK [IAN) https://www.ianresearch.org/
The innovative online project is designed to accelerate the pace of autism research by allowing parents to report information about their child’s diagnosis, behavior, environment, services received, as well as progress over time. IAN research provides a secure online setting where those affected by autism and their families are active participants in ASD research. By participating in IAN Research, you can help make new discoveries and empower advocates to improve the lives of children and adults with ASD.
AUTISM MATCH https://autismmatch.org
The goal of AutismMatch is to connect families and individuals living with autism with researchers, based on the belief that effective treatments will follow from a better understanding of the causes of ASD. AutismMatch is a community-based registry of people with ASD, their families, and typically developing people who are interested in learning more about autism research. Once enrolled, families will receive periodic contact by email from the Center for Autism.
Quick, Google it. You can support research in other ways.
• Is there autism research happening at a clinic in your hometown? At your local university? Check out some of the studies happening at The Johnson Center right now.
• Find an autism research organization in your town that needs your photocopying prowess, your filing finesse, or help serving snacks at an event bringing awareness to autism research.
• Volunteer to spread the word! If you know of a study that is recruiting, volunteer to spread the word to your friends or family or offer to hang research flyers at community centers, coffee shops, or schools and day
cares in your town.
What if you could join a team of scientists, physicians, patients, and families working together to accelerate progress in autism research? Would you do it for your own child? Would you do it for for your best friend’s child? Would you do it for the other 1 in 68 children who will be diagnosed with autism? Participate in autism research and make a difference in your community.
