People with autism spectrum disorders face lifelong challenges and require lifelong services. The services needed vary tremendously from person to person and across different ages. The needs of adolescents and adults with autism are great, yet their access to services is often poor. Families must struggle to secure appropriate placements and to cope with issues of independence, vocational planning, and long-term guardianship. In this article, we will focus on some of the most important aspects of programming that help increase positive outcomes for adolescents and adults with autism spectrum disorders.
In recent years, parents of young children with autism have had access to more services and resources than ever before. While there is variability in services across states, there is clearly a universal entitlement for appropriate services for children with autism. Children with autism are diagnosed at younger ages, and effective services are more easily obtained than in the past. Many more children with autism are educated in inclusive environments. Of course, many parents of children with autism struggle to obtain appropriate services and need to intensely advocate for their children. But most parents of younger children on the spectrum recognize that their children have access to far better services than any previous group of individuals with autism.
The reality changes and this hope fades as children with autism age. Services that were an entitlement in childhood are rare. When services can be secured, they are often not high in quality. The needs, however, of adolescents and adults with autism remain very significant. The characteristics of autism remain, and may be even more challenging. New skills become essential for independent living. Social deficits put individuals with ASD’s at serious risk for social and (even) legal difficulties. Community integration is often far more challenging with older students, as tolerance is limited and the range of acceptable behaviors is smaller.
There are a few strategies that are critically important in helping to ensure that individuals with autism get appropriate and effective services as they become adolescents and adults. The provision of these elements can help ease the severity of issues experienced as the individual with autism ages, and can tremendously increase the success of their vocational, social, and community integration.
What are the Essential Program Components?
Transition Planning: An effective program for adults starts well before the person with autism is an adult. Planning for adulthood begins during the person’s childhood, but it intensifies during adolescence. Efforts need to be made to consider future placements, to equip students with skills they will need in those settings, and to include the individual’s preferences and choices into the development of the plan.
Schall & Wehman (2009) identify several key elements in transition planning. One critical aspect of transition planning involves the development of specific goals. It is important that the goals identified match the vision that has been developed for the individual. It is also important that increased choices are offered to students as they age, with a strong emphasis on choice beginning during the middle school years. This parallels the increased level of choices available to typically developing students. This process should involve the student as much as possible, and should reflect the student’s preferences that are expressed directly and that have been observed by members of the educational team.
Another aspect of planning identified by Schall & Wehman (2009) is the provision of a wide variety of community-based employment and life experiences. There are specific behaviors that are context-specific, and work behaviors are best taught in real-life work contexts. Examples of such work-related behaviors or rules best taught at work include the rules involved in customer service and the deference expected by supervisors. Examples of community-based activities include buying food in a grocery store or waiting in line at the post office. While some of this preparation can be done in analog situations, it is best to train in the natural environment. Training in schools should include immersion and practice in the broader community.
Schall & Wehman also discuss the need for effective transition across service providers and other resources. When possible, current service providers should communicate with service providers in the next setting. Goals that are important for the next setting can be included in the current IEP, and the expertise of the educational team members who have known the student for many years can help the new team get to know the person with autism as quickly as possible.
Assessment and Treatment of Challenging Behaviors: The assessment and management of challenging behaviors is an area that has experienced tremendous attention in recent years. Positive Behavior Support services are becoming more commonly available to individuals with autism. PBS services use the principles and procedures of applied behavior analysis (ABA) to identify problem behaviors, to discover why an individual is engaging in those behaviors, and to teach alternate skills (Hieneman, Childs, & Serrgay, 2006; Smith, 2009). Behavior analysts have helped highlight the importance of understanding the functions of behavior, of matching interventions to those functions, and of teaching the individual alternative ways to get their needs met.
Individuals with autism present with many unusual and disruptive behaviors, and it is sometimes difficult for teams to select the first behaviors to target. In making that decision for an adolescent or adult with autism, the team considers whether the behavior poses a danger to the person or to others in the environment, whether the behavior curtails independence, and whether it negatively affects social or employment possibilities (Smith, 2009). The functional behavior assessment process involves identifying the purpose of the behavior (Carr et al., 2002; Carr et al., 1999; Machalicek, O’Reilly, Beretvas, Sigafoos, & Lancioni, 2007). The idea is that behaviors persist because they work in producing an outcome that is valued by that person. Understanding the motivation/reason behind the behavior is necessary for developing a plan to reduce it. The process also helps to set goals for what the person might need to learn to do differently. For example, if the behavior is motivated by the desire to escape difficult demands, it may be appropriate to teach the person to request a break. The identification of the purpose of behaviors also helps in developing prevention techniques. It may be that the person would benefit from more choice in selecting tasks to work on, shorter work periods, or more frequent scheduled breaks. The environment can be changed to reduce the likelihood of difficulties.
Teaching the individual with autism new ways to get their needs met is another essential component of addressing challenging behaviors in an ABA approach. The person with autism must learn to communicate their needs in more socially acceptable and effective ways (Heineman et al, 2006; Mancil, Conroy, Nakao, & Alter, 2006). It is also sometimes helpful to provide incentives to the individual to engage in the new target skill. For example, if an individual is being taught to request a break instead of throwing chairs, they can be given rewards for engaging in the new response of requesting a break (Heineman et al., 2006; Mancil et al., 2006).
Challenging behaviors may be the most important focus of attention in working with adolescents and adults. The social consequences of behavioral outbursts are severe, and can severely limit vocational options and social integration. Approaching challenging behaviors from an ABA perspective ensures that challenging behaviors are understood and that treatments match those functions. Furthermore, the individual is helped to develop alternative adaptive skills that are socially acceptable.
Social Skills: Individuals with autism spectrum disorders have well-documented deficits in social skills (e.g., Bellini, 2006; Matson, Matson, & River, 2007). Social skills can also have a large impact on how the individual is perceived and on the success of his or her integration into all types of settings.
Smith (2009) lists several skills that can be helpful to teach individuals with autism that may ease their entry into social settings. These include using social expressions such as please and thank you. It is also helpful to prepare individuals with autism for social expectations. For example, people will expect greetings to be reciprocated. Skills important in work settings include the ability to terminate conversations, the ability to graciously accept suggestions and corrections, and the ability to engage in basic daily social skills such as waiting and turn-taking. Another relevant skill is asking for help. While it may not necessary for the person with autism to be competent in all aspects of their job assignments, it is essential that they can recruit assistance when they can not manage a task or situation independently. In addition, it is important to ensure that the individual has basic assertiveness skills. In schools, there is often a focus on ensuring that students can manage bullying or teasing. Similarly, it is important to ensure that an adult with autism can identify and navigate such circumstances.
The social skills to work on should be developed individually for the particular learner. As mentioned above, every environment will have unique social expectations and rules. A thorough assessment of the social expectations in the work environment should be done to guide the creation of goals. Instruction should occur in the targeted environment (Smith & Targett, 2009).
Furthermore, the individual with autism has to learn the hierarchical structure at work, and needs to be taught appropriate behaviors associated with degrees of power within the organization. These kinds of nuances are extremely important. Violations of these types of rules are not well tolerated in most environments.
Other behaviors are also influenced by degree of familiarity and workplace policies. In particular, behavior towards individuals of the other gender must fall within the boundaries of acceptable behavior within that organization. Individuals with autism need to understand that certain behaviors may make people uncomfortable, that many messages are communicated nonverbally, and that people’s preferences must be respected.
Attention to these issues is immensely important. It is more likely that individuals with autism will get into difficulties at work for interpersonal difficulties than they will for performance issues. Navigating the social world is essential to positive performance evaluations and retention.
Of course, part of what we need to do is help the broader community understand the special challenges faced by individuals with autism. Educating employers about autism increases the likelihood that they will understand behavioral difficulties and attribute behaviors to the disability. This will increase their tolerance and enable the employer and employee to work together to address issues.
People with autism require lifelong services. As adolescents and adults, they experience challenging behaviors that may occur at a higher or more dangerous level than during childhood. Difficulties in adolescence and adulthood are intensified by a paucity of appropriate and individualized services and poor transition planning. The careful attention to programming and to transitioning that is available in childhood is less available to adolescents and adults. Furthermore, the social environment is more complex and there is less tolerance for socially aberrant behaviors in older learners.
Programming for adolescents and adults needs to take these factors into account. Attention must be paid to effective transition planning, the development of critical social survival skills, and the management of challenging behaviors. Efforts must also be made to educate the broader community about the needs and potential contributions of people with autism spectrum disorders.
Cecelia M. McCarton, MD is the founder and CEO of The McCarton Foundation. 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. Ivy Feldman, PhD is Educational Director at the McCarton Foundation.