03 May 2018
Autism Spectrum Disorder- a Lifetime Endeavor
Erin Bolling, CDMRP public affairs
A single puzzle piece represents a part of something that is much larger. It holds its own distinct spot, and without it, the overall picture would not be complete. Perhaps this is why the puzzle is used to graphically represent Autism awareness. An individual living with Autism Spectrum Disorder, or ASD, is not separate from the bigger picture, but is a unique piece within the greater picture. This picture is made up of mothers, fathers, siblings, cousins, friends, neighbors, teachers, therapists, doctors — all playing a role in the lives of individuals experiencing ASD.

ASD represents a wide range of complex developmental disorders that affect social, emotional and communication abilities. The causes of ASD are undetermined, which makes the research into this complex disorder extremely multifaceted.

The Congressionally Directed Medical Research Programs manages medical research in areas of specific innovation and impact for Service Members and the American public. Along with current research efforts in the areas of cancer, neurobiology, traumatic injuries, and other conditions, the CDMRP manages the Autism Research Program. The ARP started in 2007 and aims to improve the lives of individuals with ASD now.

The ARP focuses on ways to expand diagnosis and treatment, and studies psychosocial factors to enhance the quality of life for those living with autism and for their families.

What we do know about this puzzling disorder is that recent studies suggest one in 68 children born in the United States will have ASD. This statistic shows something that many others may not have considered are the numerous challenges of ASD in the long term, as these children mature into adulthood.

“Current federal law requires schools to provide special educational services for students with ASD,” said Dr. Nicole Williams, program manager for the ARP. “However, once a child graduates from high school, the support and services are no longer available, making the transition into adulthood very difficult for individuals with ASD. A study conducted in 2015 found that nearly 26 percent of young adults with ASD received no services that could help them become employed, go on to post-secondary education, or live independently.”

“Over the last several years, there has been a greater recognition of the need to assist those young adults with ASD as they age out of the school system,” she continued. “The ARP has made funding research aimed at this age group a priority, and over the last several years, a focus area of the program has been to fund research for interventions that promote success in key transitions to adulthood for individuals living with ASD.”

Williams detailed the many challenges that individuals with disabilities face during their transition into adulthood. Such factors include achieving and maintaining independent living which consists of housing, transportation, educational vocational training and employment. Attempting to access much needed clinical services, such as health care providers and specialists, can also prove very challenging.

One ARP study is researching the impact of a specific employment training program, called “Project SEARCH plus ASD Supports,” on the social communication, mental health, self-determination and employment outcomes for military dependents with ASD. This program is currently recruiting young adults with ASD from military families to participate in a nine-month intensive internship program during their last year of high school.

“Military dependents with ASD may have worse employment outcomes due to the frequent deployments of their parents,” said Williams. “The outcome of this study will include a vocational measurement of employment status, wage, number of hours worked per week, personal domains of social responsiveness, mental health and quality of life.”

Another ARP study focuses on lifetime care and treatment utilizing Cognitive Enhancement Therapy aimed at improving the core cognitive and employment outcomes in adults with ASD. Statistics have shown that the majority of young adults with ASD have limited life skills, which can impede their capability to achieve independent living and employment.
“Cognitive remediation has emerged as an effective approach for treating core cognitive deficits in other neuropsychiatric conditions including schizophrenia,” said Williams.
“The study design is to compare CET with group-based training called Enriched Supportive Therapy, in a randomized controlled trial,” she explained. “The outcome measures are composite indexes of neurocognitive and social-cognitive change, and competitive employment. The study has been completed, and it found CET to be more effective than EST in improving mental acuity and attention, and to gaining employment in adults with ASD, showing that cognitive remediation is beneficial to adults with ASD.”
Studies have indicated that 65 percent of young adults with autism have had a job or received postgraduate education after leaving high school. Currently, this population receives minimal support regarding their sensory sensitivity, anxiety, and job training, which impacts their productivity and effectiveness during employment.
The ARP manages another research effort that uses technology to help young adults with ASD transition into employment.
“The first part of the study is to develop virtual reality software to help young adults with ASD by pre-exposing them to their prospective work environments,” said Williams.
“This helps them to get familiar with the work environment, identify factors that may impact their sensory issues and reduce their anxiety toward the new work environment. The second part of the study will provide remote job coaching via smart-glasses. Remote job coaches can provide individualized training, reduce stigma associated with on-site training, and provide a cost-effective solution for employment services.”

Williams further explained the current timeline for this study began in August 2017, and the technology platform “Empower Me” was launched in November 2017. Currently, the study has been approved by the Institutional Review Board for human subjects’ research and is actively recruiting participants.

With more than 3.5 million Americans living with ASD, Autism has increased by 6 to fifteen percent each year and reportedly is the highest-growing rate for developmental disability. Although a diagnosis may be made in infancy, autistic children have a broad spectrum of needs that change as they reach adulthood — therefore, a continuum of support should be anticipated and pre-planned to accommodate the needs of adults along the full autistic spectrum.

Through the ARP, there is a unique partnership of scientists, researchers, managers, advocates and peers committed to improving the lives of individuals with ASD.

All of this research is helping to put the puzzle together, one piece at a time.
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