Here is information about an opportunity to participate in a research project through Penn State Health/Penn State College of Medicine Hershey that may be beneficial to you or someone you know. The project is called PARSEC, which stands for PArticipation in Rural Settings to Engage in Communities. PARSEC is a research project; it is voluntary and certain criteria for eligibility may apply.
PARSEC is a program for young adults (ages 18 – 25) diagnosed with ASD, and is a one-year program designed to see if participating in a telehealth intervention compared to receiving no intervention results in young adults with ASD doing more in their community. The young adult with ASD will be required to have an individual that knows them well (typically a parent, guardian, family member) that we call the natural supporter. The natural supporter will also be asked to fill out surveys about the young adult with ASD, as well as surveys about themselves. PARSEC is a randomized controlled trial. This means that not everyone who signs up for PARSEC will be entered into the intervention.
50% of people who enroll will be randomly assigned to receive the intervention. These individuals will participate in 15-minute, weekly phone calls or online meetings with a coach. Both the young adult with ASD and the natural supporter would need to be available for weekly phone calls/meetings. In addition to the phone calls, there will be videos on a PARSEC channel online for viewing and missions you will be asked to complete weekly.
50% of people who enroll will be assigned to receive treatment as usual, which will include monthly emails individualized for you with information on things you can do in your community.
If you or someone you know may be interested in participating in PARSEC, please contact the Psychiatry Department Research Assistants at 531 – 0003, x285543 or email Jayde Nagle at firstname.lastname@example.org. They are happy to answer any questions you may have about participating.
“Pennsylvania Autism Census | The 2014 Pennsylvania Autism Census Update was released in the Fall of 2014 by the PA Department of Human Services, led by the ASERT Eastern Region. The Pennsylvania Autism Census is an administrative count of the number of individuals who are receiving services in public service systems. The 2014 update used data from multiple Pennsylvania systems.
Data for the 2011 report are shown here:
“The stress of living with autism is exhausting.”
Vox – Shutterstock
by Sarah Kurchak
“On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.
“Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate.”
Read this Vox First Person narrative essay in its entirety, click here.