Individuals connected to the behavioral healthcare system are well aware that autism does not magically disappear on a teenager’s 18th birthday. Yet, the challenges facing people diagnosed with autism spectrum disorders (ASD) shift considerably as they make the transition to adulthood. Expectations change and consistent patterns are disrupted. Crucial social skills developed and practiced in school and at home must be applied in new settings, and independent living skills assume heightened importance as core requirements of daily life.
Altering the routine of an individual with autism, at any age, can present complications. For adolescents, this issue is compounded as critical behavioral health services end – or are considerably reduced – as students leave the school environment. Specifically, during their last year of high school, youth with autism were less likely to receive 12 out of 15 behavioral health supports – such as speech language therapy, in-home/in-classroom aide and occupational/life skills – versus younger high school students (Taylor, Henninger, 2015).
Disruptions in autism services create considerable challenges for families as well. Stopping points in treatment and funding require parents to navigate through complex systems and time-consuming processes to secure additional levels of support for their child while, at the same time, guiding the child through stressful transitions without a familiar or much-needed support structure.
Approximately 500,000 individuals with ASD will age into adulthood in the next 10 years (Roux, Shattuck, Rast, Anderson, 2017). Given that autism is the fastest-growing developmental disorder in the U.S., understanding how this transition impacts an individual’s treatment and quality of life, and finding innovative ways to better serve them, is becoming increasingly critical. However, reports show that just 1 percent of autism research funding is associated with adulthood and aging (Interagency Autism Coordinating Committee, 2017).
Advancing the Role of Behavioral Health
Clearly, there are gaps in the system. Youth with autism are half as likely to receive healthcare transition services as youth with other special healthcare needs (e.g., individuals with chronic, physical, developmental, behavioral or emotional conditions who also need health and related services beyond what is generally required). In addition, adolescents with autism, along with other conditions, face an even greater risk of lack of services (Cheak-Zamora, Yang, Farmer, Clark, 2013).
We must eliminate these service gaps and help families create structured, effective and long-term vision plans so youth can easily obtain the next level of care they need to thrive. To do this, we have an obligation – as an industry and a country – to advance the role of behavioral health to the same standards of physical health.
Focusing on the Whole Person
Devereux Advanced Behavioral Health is addressing this need as part of its vision for the future, which includes reinventing the client experience – from episodic to whole-person, whole-life evidence-based – to improve outcomes.
This holistic approach calls for the same standards of treatment for physical healthcare to be applied to individuals with emotional, behavioral and cognitive differences. By integrating behavioral health into the clinical, operational and financial frameworks of primary and specialty medical care, we not only will better serve the individuals in our care, but we will be one step closer to eliminating the stigma facing those with behavioral health challenges.
The quest to reintegrate physical and behavioral healthcare requires families and providers to be in lockstep when it comes to establishing long-term strategies for individuals with autism – at every life stage. Families can best position their child for success when they have a partner who possesses a deep understanding of available resources, community and transitional supports, and funding streams, as well as insight into an individual’s unique strengths and needs. This partnership begins with early diagnosis to facilitate effective interventions and treatment, and charts a course for the child to lead a positive and productive life.
Transitioning from School to Work
An example of Devereux’s efforts to collaborate with families and help youth prepare for adulthood can be found at the organization’s Center for Autism Research and Education Services (CARES) center in Downingtown, PA.
CARES provides elementary educational services for youth with autism, beginning at age five, as well as transitional high school educational services for adolescents. Services are based on applied behavior analysis instructional strategies and focus on critical skills needed for independence and a high quality of life. The school’s instructional program also includes frequent (several times per week) community-based instruction (e.g., recreation, wellness activities, employment training) to cultivate greater independence in community settings.
Between the ages of 12 to 14, students and families begin working with school staff to create a person-centered plan in preparation for adult life. An important part of that plan may be working in the community. In these cases, CARES’ community-based employment training sites give students the opportunity to learn job skills, while promoting the development of communication, appropriate work behavior and social skills.
The Importance of Community Integration
Services that strive to integrate individuals with autism into their communities – through community-based living services and employment training programs – are also imperative for the transition to adulthood.
For instance, Devereux Pennsylvania’s Community Adult Autism Partnership Program (CAAPP) provides adults with autism, and other disabilities, instruction and support across community, home and work environments to help them become productive and personally fulfilled members of their communities.
The success of this program can be seen in individuals like “Robert,” a former CARES student turned CAAPP participant. After Robert entered CARES, his family began exploring adult program options. During school, Robert participated in a variety of employment training opportunities, including fulfilling book requests at a library and computer data entry at a senior center. A systematic, structured and individualized approach guided Robert and his family toward a smooth transition from school into a community-based adult program. Today, he continues to successfully volunteer in community settings and attends a facility-based program during the week.
At every age, and at every point on the spectrum, individuals living with autism need innovative and thoughtful services to help them achieve productive, healthy and socially connected lives.
As Devereux continues to advance the provision of care across the lifespan and work toward its vision of whole-person health, this evolution includes compassionate and effective treatment for those who need our support, robust partnerships with families, and reshaping public perceptions about individuals with behavioral health differences.
Ultimately, taking this approach will help adolescents with autism – on the cusp of adulthood – discover their unique and wonderful gifts, so they can be shared with the world.
Carl E. Clark II is the President and CEO of Devereux Advanced Behavioral Health.
Devereux Advanced Behavioral Health is one of the nation’s largest nonprofit organizations providing services, insight and leadership in the evolving field of behavioral healthcare. The organization is a recognized partner for families, schools and communities, serving many of our country’s most vulnerable populations in the areas of autism, intellectual/developmental disabilities, specialty mental health, and child welfare. For more information visit www.devereux.org.
Cheak-Zamora NC, Yang X, Farmer JE, Clark M. Disparities in Transition Planning for Youth with Autism Spectrum Disorder. Pediatrics 2013 March 131(3) http://pediatrics.aappublications.org/content/131/3/447.
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC) (2017). 2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.
Roux, A.M., Shattuck, P.T., Rast, J.E., Anderson, K.A. (2017). National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
Taylor, J.L. & Henninger, N.A. J Autism Dev Disord (2015) 45: 179. https://doi.org/10.1007/s10803-014-2203-x.