As the mom of a teenage son diagnosed with Autism Spectrum Disorder (ASD), I admit I have been slightly terrified of the thought of my son exiting the public education system. Despite the countless hours of one-on-one support from Loudoun County Public School teachers and aides, and after careful, exhaustive reviews of my son’s annual Individualized Education Plans (IEP, a document that addresses my son’s education goals), I’m worried about the abyss waiting at the end of the K-12 road, and with good reason. According to a 2014 survey by the Bureau of Labor Statistics, only 19.3% of people with disabilities are in the current work force. It is estimated that one in 69 children in the United States are affected by ASD, and that number is growing. There has been no known formal preparation that would adequately prepare my son for employment, even though we have invested time, energy, and money into private social and behavioral therapies since before my son even entered kindergarten.
Enter Dr. Kevin Pelphrey, Director of the Center for Translational Developmental Neuroscience and the Neurogentics Network of the Autism Centers of Excellence Program. Dr. Pelphrey was hired by The George Washington University in 2016, and is a former psychiatry professor of the Yale Child Study Center at Yale University. Dr. Pelphrey has refined and implemented the vision of the Autism and Neurodevelopmental Disorders Institute as a resource that offers evidence-based clinical treatments, and conducts research on the full spectrum of autism. In partnership with Children’s National Medical Center, the Autism and Neurodevelopmental Disorders Institution focuses particularly on adults with autism, a rarely covered age range in the field. In addition, Dr. Pelphrey aims to make the institute a “one-stop” resource for families affected by autism in the Washington metropolitan region.
Dr. Pelphrey has a personal interest in his studies, as his daughter has been diagnosed with ASD. “Autism is a lifelong diagnosis but is so rarely researched past childhood,” said Dr. Pelphrey. “The Autism and Neurodevelopmental Disorders Institute provides the opportunity for us to take a lifespan perspective and consider the disorder from molecules to minds, looking at everything from the chemical makeup of the disorder to how it manifests in people’s behaviors.” The Autism and Neurodevelopmental Disorders Institute will primarily be housed on GW’s Virginia Science and Technology Campus in Ashburn, Virginia. The university is investing more than $5 million to establish the Autism and Neurodevelopmental Disorders Institute as a leader in autism research and policy.
In addition to funding from the university and research grants, Nelson Carbonell, chair of the GW Board of Trustees, and his wife Michele Carbonell, chair of the National Capital Area chapter of Autism Speaks, donated $2.5 million in 2014 to establish the Carbonell Family Professorship in Autism and Neurodevelopmental Disorders. The Carbonell’s son Dylan was diagnosed with ASD when he was three. Mr. Carbonell has been candid about his son’s challenges growing up, noting that Dylan struggled in private and public schools (he hated both), and by the time he was a senior, his parents realized he was “too smart to work in retail” but “not smart enough to go to college.”
“Dr. Pelphrey will be a catalyst to bring in more resources to help autistic children and adults,” said Mr. Carbonell. “Right now, there aren’t enough programs, policies or strategies for adults and teens with autism transitioning to adulthood, but the Autism and Neurodevelopmental Disorders Institute, under the leadership of Dr. Pelphrey, has the real potential to change that.”
Included in the grant by the Carbonell Family is the development of the Autism Transition Project (ATP) through The Center for Health and Health Care in Schools (CHHCS) at GW’s School of Public Health Services. ATP focuses on preparing students with ASD to leave the school system and be successful in adulthood. By connecting with parents and young adults with ASD, and working with schools in Maryland, Virginia and the District of Columbia, CHHCS can determine what strengths and weaknesses are presented between the IEP process and the transition into adulthood. CHHCS is a nonpartisan resource, policy, and technical assistance center located at GW’s School of Public Health and Health Services. It has a 25-year history of developing school-connected strategies for better health and education outcomes for children.
“Statistically, we know that individuals with disabilities are at greater risk for unemployment than the general population, and this is especially true in D.C.,” Professor of Special Education and Disability Studies Juliana Taymans said. “Project SEARCH provides youth and young adults with disabilities with the tools to explore their career interests and develop job skills.” The national employment preparation program has engaged 11 D.C. residents with disabilities in an 11-month program that follows them from first day workplace jitters to the feeling of a job well done and, hopefully, regular employment.