Individuals with autism spectrum disorders receive tremendous amounts of specialized intervention during their educational years. During that time, the focus is generally on skill acquisition and behavior reduction, with a general goal of increasing competence. These interventions are often not guided by a vision of the future – by a sense of where those individuals are going, of the environments they will integrate into, of the individuals’ preferences, and of the skills that will be essential to be successful in those environments.
Logistical challenges create real obstacles as well, in terms of coordinating transition planning into adulthood. Although most states and school districts recognize the importance of coordinating transition planning with the adult services system, challenges relating to the availability of funding, the length and type of services available, extensive waiting lists, and access to reliable transportation remain significant obstacles. In short, the best planning cannot overcome the absence of programming on the other side of transition. Despite these challenges, a primary focus of transition “must be on assisting agencies to work more efficiently in coordination with one another” (Bates, Bronkema, Ames & Hess, 1992, p.128).
How do we prepare learners with ASD for adult life? What are the critical competencies? What should guide educational programming in later years?
Definition of Adulthood
In the United States, adulthood tends to be defined along a number of dimensions. These would include what one does for a living, where and how one lives (e.g., urban v. suburban v. rural), one’s membership in religious/community organizations, who one considers to be friends or acquaintances, and one’s marital status and/or nuclear family membership. Unfortunately, the primary emphasis of most transition planning is the “school to work” transition process which, while critically important, should be considered a necessary yet not sufficient component for an adult life of dignity and quality. It is a limiting view, a truncated definition of adulthood. Effective, comprehensive transition planning should include goals across a variety of life domains that span society’s widely accepted definition of competent adulthood.
Other Elements of Effective Planning: Focus on Family Involvement and Support
Direct family involvement is essential for effective planning, implementation, and service coordination for the adolescent with autism. In addition to their person-specific expertise regarding their son or daughter, parents are often well-versed in state-of-the-art autism treatment and the current state of autism services in their area through their networking with other parents, attendance at conferences, reading of relevant texts and access to the internet. Steps need to be taken to encourage a family’s active participation in the transition process.
Many parents are well versed in the current state of autism services in their area through their networking with other parents, attendance at conferences, reading of relevant texts and access to the internet.
Perhaps the most important role that family members can play in the transition process is that of advocate. Stressors multiply during the transition years for parents of children with autism (e.g., an unfamiliarity with the adult system of services and supports, the potential inability of this system to meet the needs of their nearly adult child, the stress associated with life-cycle transitions in general, and uncertainty regarding the future). However, the need for parents to forcefully advocate on behalf of their son or daughter does not diminish with age. In fact, given the challenges that they and their child with autism will most likely face in the transition process, the need for parental advocacy may be even more critical.
Other Elements of Effective Planning: Curricular Emphases
In addition to parental involvement, the program itself must shift in emphasis. While skills should always be selected with functionality in mind, this becomes imperative as students age. Individuals should be instructed in skills that matter, in contexts that matter, and with materials that matter.
As students reach adolescence, a critical evaluation of their skills in adaptive living must guide programming. Skills selected should be skills that help them navigate their environments independently and effectively. What are functional skills? Brown et al, (1976) identified some questions to help determine whether a skill is indeed functional. These questions revolve around the themes of independence and relevance:
- If the learner can’t do it, will someone else have to?
- Is the skill age-appropriate for the learner?
- Is the skill needed immediately?
- Will it continue to be needed in the future?
- Is the skill needed frequently?
- Will the skill be needed in multiple environments?
- Can it be maintained by naturally occurring events?
- Will the skill enhance the learner’s quality of life?
We need to teach learners with autism skills that they need, that they will use on a daily basis and that increase their ability to navigate their environments. Toward that end, we need to select goals that are in keeping with this vision. Is it important to continue to teach matching for 8 years, to focus on sorting shades of colors, to teach counting with manipulatives as it is taught to young elementary school students?
It makes more sense to transition to teaching in natural contexts and environments. Instruction can be done in the contexts in which skills are needed and in manners that facilitate generalization to natural contexts. Matching and sorting can be taught in the context of laundry folding, and counting can be taught as part of recipe following or snack preparation.
Creating the Appropriate Educational Environment
The right educational environment for an older learner with autism is one that emphasizes teaching in natural contexts and activities. Ideally, much instruction should be done in the community. Purchasing skills can be worked on in stores, transportation skills can be worked on in buses, and vocational skills can be worked on at job sites. To the extent possible, community-based instruction should be provided to aid generalization, increase relevance, and target skill deficits most efficiently.
This requires a shift in some other elements of programming. Data may be collected on number of minutes engaged in a task, number of feet away from an instructor, or number of prompts needed to complete a purchasing transaction. Discussions with parents may center on how independence can be fostered, how proximity of adults can be faded, and how academic skills can be emphasized within real and meaningful activities.
Benefits of a Paradigm Shift
Adolescents with autism need a shift in focus to functional, relevant, meaningful, and preferred activities. Parents and educators involved with typically developing children see adolescence as a time of self-definition and clarification of goals. We need to consider how the needs of individuals with autism are met as they mature and age. Our programming needs to be guided by our vision of their future, by a commitment to improving their quality of life, and by our values on independence and integration into the broader community.
Bates, P.E., Bronkema, J., Ames, T., Hess, C. (1992). State level interagency planning models. In F.R. Rusch, L. DeStefano. J. Chadsey-Rusch, L.A. Phelps, & E. Syzmanski, (Eds.), Transition from School to Adult Life: Models, Linkages, and Policy. (pp 115-129). Sycamore, IL: Sycamore Press.
Brown, L., Nietupski, J., & Hamre-Nietupski, R. (1976). The criterion of ultimate functioning. In M.A. Thomas (Ed.), Hey Don’t Forget About Me! (pp. 2-15). Reston, VA: Council for Exceptional Children.
Peter F. Gerhardt, EdD is the Director of Education at the Upper School for the McCarton School in New York City and Chair of the Organization for Autism Research (OAR) Scientific Council. Mary Jane Weiss, PhD, BCBA is the Director of Research and Training at the Douglass Developmental Disabilities Center and a Research Associate Professor at Rutgers University. She consults to The McCarton School. Cecelia M. McCarton, MD is the founder and CEO of The McCarton Foundation. Ivy Feldman, PhD is Educational Director at the McCarton Foundation.