There is more to July 4 than just fireworks and barbecues. Come to Potomac early in the morning and race in the Autism Speaks 5K run/1 mile walk and Stroller Derby. The hills of Potomac will abound with runners racing for the many children, young adults and families affected by autism. This year will feature a Stroller Derby for racers – and after the start is announced, walkers will enjoy ambling through the picturesque neighborhoods of Potomac.
For 15 years, 1,600 or more runners and walkers have dedicated the morning of Independence Day to this fundraising event. By 8 a.m., they are gathered at the Potomac Library on Glenolden Drive en masse to support the 5K Run/1 Mile Fun Run for Autism Speaks — an organization that raises awareness as well as research funds for the many children and families that are affected by autism. One is 68 children in the U.S. is diagnosed with autism — a 30 percent increase from one in 88 in 2012 and a 75 percent increase in the last 5 years.
The founder of the Autism Speaks 5K event is Susan Pereles of Potomac. She is thrilled that the race has become a Potomac July 4th tradition. “I am pleased that the number of racers increases each year, more than 100 teams participate and we were able to raise $285,000 for autism research last year. Our incredible presenting sponsors, BOWA and PMGI help to make this race so successful along with the many other sponsors who support us year after year. However, this year the race falls on a Saturday, which means that many of our usual participants are not available, due to other commitments. I’m hoping that Potomac area residents will make a special effort to come out to support our cause,” she said.
“Anyone who is not able to come to the race can participate in our ‘Virtual 5K.’ Just register and support the cause from the beach, the mountains or from anywhere you happen to be. Last year, people registered from London, Afghanistan, Kosovo and Hawaii. You can sleep on your couch or run on a treadmill. Whatever you do, you will be helping our cause,” she added.
Pereles was motivated to create this 5K because her nephew was diagnosed with autism at an early age and to go to work for Autism Speaks where she is a director of Field Development. Her nephew is now a teenager, and his parents are looking at options for transition, employment and housing for him as he becomes an adult.
A report by Drexel University titled “National Autism Indicator’s Report: Transition into Young Adulthood” cites that “About a half-million youth with autism will enter adulthood over the next decade. Most will continue to need some type of services or supports — even among the most cognitively able. Some will enter college. Many will seek employment. Some may not have the skills to do either.”
When an autistic student leaves high school between the ages of 18 and 21, he or she is no longer eligible for services received since pre-school or before. The legal mandate for services ends with high school, and there is no federal requirement for providing support services in adulthood; instead adults with autism must follow different procedures for qualifying for any kind of transition services.
For years, research funds have been dedicated to discovering the cause and treatments for those on the autism spectrum. However, as youth enter adulthood, funds must be channeled to the problem that is at hand and in the future: how to provide training, careers, employment and housing for autistic adults. “This data brings the importance of the race into perspective,” said Pereles. “The more money we raise, the more research can be done to solve the problem that our nation is facing of how to best help and support autistic youth as they enter into adulthood. The needs are not going to go away — they are only increasing. Children grow up and autism doesn’t end with adulthood.”
Local resident Peggy Dillenberg volunteers yearly for the race. She is the parent of twin boys, one who is autistic. She said, “We are knee-deep in planning for my autistic son’s future. We will need to figure out where he will live and if there will be sufficient adult services. Each autistic adult will have different requirements because each is different. My son will need one-on-one support vocationally and in his living environment for the rest of his life. He will require therapy, job skills training and to live in an environment where his needs are cared for. I have been told that in Montgomery County the wait list for these services could be as long as 15 years. I worry about his future every single day.”
Marley Rave, director of the Washington Capital Autism Speaks, said, “There is a tsunami of young adults with autism coming of age. The face of autism is changing and we need to change the future for those adults. Families are saying: What happens now that the school bus stops coming? No other 5K has had more participants across the nation — or raised more money. However, the annual cost to a family of an autistic child is $60,000 a year — and how can most families support these costs?
Dillenberg also speaks about the impact that Autism Speaks has had on her life. “Autism Speaks provides resource fairs, town hall meetings and information for parents concerning specific needs over the course of a child’s lifetime. I have learned a lot about how other families cope and the best resources to meet my child’s needs. Autism Speaks also lobbies for legislative action. Congress just passed the ABLE bill that aims to ease financial strains faced by parents with children with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. Now this law must be approved by every state. It is incredibly important legislation. Most parents save for four years of college for their children, but parents of disabled children must save for their child’s entire life. It’s daunting.”
Pre-registration for the 2015 Autism Speaks Run/Stroller Derby/Walk is available on-line at www.autismspeaks.org/autismspeaks5Kpotomac. Registration and packet pick-up are available on July 4 from 6:30-7:30 a.m. or at Fleet Feet in Gaithersburg on June 27 from 1-4 p.m. Details may be found on the website.