The recent article in Archives of Pediatrics & Adolescent Medicine by Shattuck and colleagues1 should act as a wakeup call to all policymakers about the use of resources for families with a disabled child. The transition from being a dependent adolescent with autism to an independent adult requires a major financial and social investment from schools, families, and entire communities. Some states may have already exhausted their budgets for this growing population and others may continue to support ineffective transition policies. Today, most young adults with autism have a life expectancy similar to that of the rest of the population, and those who receive job training skills are generally able to participate in the workforce, if only in a minimal fashion.
In their nationally representative survey of parents and guardians of young adults with autism, Shattuck and colleagues1 found a significant decrease in the use of services after these youths leave high school. According to the study, many young adults with autism live with their parents (79%) and luckily most have health insurance (91%).1 However, only 60% still receive some type of supplemental services (such as speech therapy, mental health counseling, and case management) and nearly 40% have stopped receiving services altogether. Young African-American adults with autism are 3.31 times less likely to receive services than their white counterparts, and families with incomes of $25,000 or less are 5.96 times less likely to receive services than those with incomes of $75,000 or more. The message here is that services for adolescents with autism, who are the most vulnerable and have the greatest need, are not being maintained during their transition to adulthood. Although many involved parties can share the blame for this, the main problem is a lack of overall planning for this transition. The process of transition needs to start early and be discussed at every well visit during the teenage years.
Why the difficulty in maintaining services? Unfortunately, Shattuck and colleagues1 could not identify which states were better at maintaining services or why the “drop off” in services exists. As the father of a 15-year-old son with autism and a pediatrician who has lived in 3 states, I have noticed that services for a child with autism who is still in school are often fought for by parents who are willing to be the “squeaky wheel.” Obtaining services after high school requires a higher degree of fortitude. For example, when someone suggests that a group home be built for young adults with autism, very few communities volunteer their street, block, or subdivision. The misperceptions about people with autism need to be changed before policymakers, community leaders, and family members can root out opposition and break down barriers. Obviously, some states have been more than accommodating to adults with disabilities, whereas others have been ruthlessly conservative. Likewise, while some states have struggled to maintain services despite budget shortfalls, others have been reprimanded by the Justice Department of the federal government for not following the American Disabilities Act.
So how do we solve this problem? Advocating for the most economically feasible policies within each state appears to be the best solution. This generally means making community-based decisions. Transitional planning to adulthood for children with autism should occur while the child is still in school. This may start as early as middle school but definitely by the ninth grade. In addition, the barriers for lower income patients with autism need to be better understood.
Transportation issues and access to information resources, such as the Internet, may be the biggest hurdle for young adults with autism. This is where the medical home can help. Parents should be provided information about the transition to adulthood early and often. Make sure you discuss health care, employment options, guardianship, and community participation along with local, state, and federal resources. The Autism Resource Toolkit (available through the American Academy of Pediatrics Web site www.aap.org) has some helpful planning tools and is a great place to start. Other valuable resources are listed in the Table.
The road for many families dealing with autism is rocky. For the youth with autism to lose services just as he/she reaches the point of independence makes no sense. Maintaining case managers and mental health services after age 22 years is critical to a successful transition to adulthood because it retains structure during a time when many youths with autism may manifest depression and anxiety. For a comprehensive look at the challenges of transition and how to help youths with autism achieve a productive citizenship, see Autism and the Transition to Adulthood: Success Beyond the Classroom by Wehman, Datlow Smith, and Schall.2
Table – Autism resources
Achieving Higher Education with Autism/Developmental Disabilities (AHEAAD)
American Academy of Pediatrics (AAP)
American Association on Intellectual and Developmental Disabilities (AAIDD)
Association for Persons in Supported Employment (APSE)
Association of University Centers on Disabilities (AUCD)
Autism Society of America (ASA)