On Saturday, June 9th, I had the extraordinary experience of being able to attend “The ATN Conference” at The University of Rochester. Having participated in the numerous walks in our area by Autism Speaks, and seeing the advertisements for the Conference, I was interested in knowing how the money was utilized. I knew that there were 17 Autism Treatment Network (ATN) sites across the US (15) and Canada (2), but I’d only vaguely heard about the research being done at our local site.
Knowing we were fortunate to have this site, I decided it was a worthwhile endeavor and secured child care in order to attend.
I was pleasantly surprised to hear a series of short, easy to understand presentations by a series of presenters representing many different research projects currently going on at the ATN. Each presentation lasted about 20 minutes with insightful information regarding (in order of presentation) Sleep Disorders, ATN Toolkits and Dissemination Projects, Children’s Hyperactivity, Communication & Music Perception Study, Diet and Nutrition in Children with Autism Spectrum Disorder, Taste and Smell in Autism: Uncovering the Pathways from Sensory Functioning to Food Preferences, and lastly, Genetics of Autism.
One of the most eye opening pieces of information shared (by Dr. Tristram Smith), was in regards to the families who participate in research studies. According to Dr. Smith, “Nearly 90 percent of children with cancer are enrolled in clinical trials – contrasted with only 5 percent of children with autism.”…
I could easily go into much detail about why it is difficult for families to commit to these clinical trials, but I think I’d rather instead, focus on why we as families need to do a better job of seeking answers.
At the conference it was noted by Lynn Cole that research is making a move from seeking causes of autism to seeking strategies that are effective in managing autism. I think that is a rallying cry for our families to step up and participate in these clinical trials. I know that when we are at the CSE tables that the research being done through the ATN will be invaluable in negotiating for services for our children in educational domains.
It is critical for us to improve that 5 percent participation rate in these studies. Yes, it is one more task in our overloaded lives, but the information gleamed is something that will pave the way for so many other families, and we all want that road to be smoother that the one we’ve traveled ourselves.
With that in mind, UNYFEAT has rallied to the cry to help with sharing more information about “our” ATN. UNYFEAT will be sharing more through our message board, Facebook, and eventually link the information to our Website through its own drop down feature. In the meantime, please visit: http://www.autismspeaks.org/science/participate-in-research or call directly to our ATN at (585) 275-0953.
Special thanks for Dr. Susan Hyman for her organization of the Conference and to the presenters, Dr. Heidi Connolly, Lynn Cole (MS, PNP), Dr. Tristram Smith, Dr. Laura Silverman, Dr. Patricia Stewart, Dr. Loisa Bennetto, and Dr. Chris Stodgell for giving of their time on Saturday to represent the work done in their studies. On behalf of UNYFEAT we are very grateful for the work done by your teams.
Community Relations Director
Upstate NY Families for Effective Autism Treatment