I frequently see requests from graduate students, hospitals and universities asking family members, children and adults with autism to consider participating in a research study. Too often the studies are being conducted in settings a distance from Erie in large cities and university centers. For that reason, our participation has typically been online questionnaires about the treatment that we use and find effective for children with autism. So whether you live in a big city or a small town, there are always opportunities to become engaged in research.
Here are two recent reports that reflect the importance of involvement.
- A study on brain synapses on autism led by Drs. Tang and Sulzer is helping us to understand the differences of brain structure that are found in autism. For typical children, the number of synapses decreases as they grow older. In persons with autism, the number of synapses fails to decrease in the same way as a typical child. This is leading scientists to seek new drugs that will treat autism by restoring normal pruning of brain cell connections.
- Amy Weitlauf and her team from the Vanderbilt Evidence Based Practice Center reported to the U.S. Agency on Healthcare Research and Quality that there has been a dramatic increase in the scientific evidence backing the effectiveness of intensive behavioral therapy for children with autism. There is a clear consensus that early intensive intervention can significantly improve the lives of children with autism thereby saving money by promoting greater independence later in life.
So often I have read that we cannot find the cure for autism until we identify the causes. However, by participating in research, we can help the investigators come closer to the causes and the most effective treatments. If you are willing to consider some opportunities, I’ve included a few links to pursue.
- It Takes Brains
- Vanilla Autism Study
- Autism Speaks
- Primary Care Stepping Stones – Positive Parenting Program
I wanted to read the full article but the link appears to be broken. Could be just me.
*From:* All About Autism [mailto:email@example.com] *Sent:* Tuesday, August 26, 2014 9:43 AM *To:* firstname.lastname@example.org *Subject:* [New post] Would You Consider Participating in a Research Study?
all about autism posted: “I frequently see requests from graduate students, hospitals and universities asking family members, children and adults with autism to consider participating in a research study. Too often the studies are being conducted in settings a distance from Erie i”
I am contacting WordPress about this issue. Thank you for letting me know.
I think that when are kiddos are in therapy programs, social groups, and also school on top of that it is hard to add research participation into our child’s schedule. I agree research into causes of Autism is very beneficial but the idea of a cure makes me uncomfortable and many autistics uncomfortable. Maybe involvement would be higher if autistic adults were involved more giving their input in the first place regarding treatment and research? Just a thought….
Thank you for following my blog. You certainly are right. There are only so many hours in a day. There is much discussion around the issue of “cure”. I certainly don’t purport to have all of the answers but simply wanted to increase awareness.
We had blood drawn on us and our kids in the late 90s…for genetic research. They came to our house. Along with interviews, that was all we did. I hope it helped.
Thanks for following the blog. One person can make a difference.