We are writing in response to your Dateline segment titled “On the Brink,“ in which you addressed the fears, concerns, and challenges facing adults with autism spectrum disorders (ASD) by sharing the struggles of two families who have adult sons diagnosed on the spectrum. We applaud NBC News for shedding light on an enormous problem that has mounted in the autism community. Our country is currently facing a critical point in providing services for an increasing number of individuals with ASD who have reached adulthood. While this issue is beginning to gain traction in the media, stories like yours are important as they provide valuable firsthand insight and connect viewers with a “face” to this issue.
The struggle to find supports can be frustrating for families at any stage in life. It would have been helpful for your report to mention and discuss the services and resources that can be accessed during the transition to adulthood. This information, combined with the caveat that they are often difficult to access and accompanied by long waitlists, would have provided your viewers with a more comprehensive overview of this complex issue.
It is clear that planning for transition must begin well in advance of the age of 21, so providing education to families and individuals with autism that will empower them to make such plans is imperative. It can be daunting for families to find the supports they need after graduation; as we can see in this video, the parents take on the majority of the responsibilities for their adult children. The task of accessing these resources should be shared by the current network of service providers as well as the school system.
There are some valuable resources available on the ASAT website for adolescents and adults with autism. One example is a High School/High Tech Vocational Rehabilitation Program that is “a comprehensive transition program that uses a variety of activities and innovative approaches to expose transition-age youth with disabilities (ages 14 to 24) to careers in science, technology, engineering, and math (referred to as the STEM careers) and other technology-based professions” (Office of Disability Employment Policy, ODEP). It also encourages such youth to pursue postsecondary education and training. The ODEP maintains a list of states that provide such services and related outcomes. (Transition Resources)
Parent/ caregiver supports are also an important factor. Support groups are available for parents or caregivers who are advocating for family members with developmental disabilities. These groups may provide unique opportunities for parent-to-parent supports allowing them to meet other parents who have similar needs and concerns, and who have children or adults with similar disabilities. In future pieces on this topic, it would be helpful to include resources such as these.
To improve the lives of these families, we can work together to bring awareness of the resources available to families and the right times to access them. While these young adults may be missing a specific structure when they leave the school environment, there can still be continuity in the home and community environments. The use of applied behaviour analysis (ABA) strategies includes concepts such as generalization and maintenance of skills to ensure that skills learned in different environments can be carried over to other places and situations.
Thank you again for your attention to this tough issue. There is an overwhelming amount of information, support, and often media coverage, available for families of young children with autism. Clearly educating parents and consumers of autism treatment is critical; however, providing evidence-based information, transitional support and media exposure for parents across their child’s life-span is equally as important. As your article highlights, there is often a scarcity of resources that parents of adults are often left rudderless to navigate. To find more information on evidence based treatments for autism, please visit www.asatonline.org. By coming together to share, plan and encourage independence using the science of applied behaviour analysis throughout the school-aged years, we may find more positive outcomes for these families.
Sincerely,
Catherine Rooney, BCaBA, and Elizabeth G. Callahan, M.A., BCaBA
Association for Science in Autism Treatment
