Many adults with autism spectrum disorders (ASD) experience stress in their daily lives and feel socially isolated. The challenges of adulthood are many and varied, and many adults with ASD have few friends with whom to share those challenging experiences. Support groups for adults with ASD, when planned carefully and structured in a positive way, can provide the right venue for individuals to interact and receive much-needed support from each other.
For many adults on the spectrum, structured learning typically focuses on daily living skills or vocational preparation but does not provide directed opportunities to learn specific social skills with peers. One of the greatest difficulties for many adults with ASD is social communication, which has been tied to problems with friendship, employment, and leisure (MacLeod & Johnston, 2007). Complicating matters is the notion that social and emotional issues have been shown to increase with age (Howlin, Mawhood, & Rutter, 2000).
Additionally, several studies have shown that adults with ASD have difficulty making and keeping friends. In a study by Howlin, Mawhood, & Rutter, which defined a friend as a same-age peer who shares activities and interests, half of the adults with ASD who were studied had no friends and only 15% had at least one real friend (Howlin, Mawhood, & Rutter, 2000). Another study found that only 8% of adults studied had at least one friend of the same age with whom they participated in activities outside of programs or organizations. About half of the adults studied had no reciprocal relationships that met their criteria for friendship (Orsmond, Wyngaarden Krauss, & Selzer, 2004).
Compounding these issues for adults is that many of them find that their support systems change drastically after high school. They enter the adult world with barely any of the same supports they had when they were in school. Some adults are in programs that link them to the community or to others with similar profiles, like vocational, day therapy, or post-secondary programs, but many others are not enrolled in community programs at all. In childhood, parents can play a large role in facilitating friendships (Hillier, Fish, Cloppert, & Beversdorf, 2007) but that largely changes in adulthood as well. Some studies have found that adolescents with ASD are more likely than adults to have peer relationships, perhaps because of these changing supports (Orsmond, Wyngaarden Krauss, & Selzer, 2004).
So, what can be done to adequately support adults with ASD so that they can make social skill gains and maintain friendships? Programs aimed at social and recreational participation with peers have been found to be highly successful (Orsmond, Wyngaarden Krauss, & Selzer, 2004). In particular, support groups that teach social skills and then practice their application in real-life situations can be very effective. Hillier and Fish found that adults who participated in support groups such as these had improved levels of empathy, increased personal expression, and friendships that extended beyond the group. They also found that members of the groups had more positive attitudes about employment and community participation as a result of the group (Hillier, Fish, Cloppert, & Beversdorf, 2007). Other studies have found support groups for adults with ASD to improve self-confidence and self-advocacy skills (MacLeod & Johnston, 2007).
Top programs across the nation have some common threads. Social support groups for adults with ASD should meet regularly in a community setting, have a format that is structured, and should at least partially control themselves (MacLeod & Johnston, 2007). Many groups are facilitated by a professional, but others, such as those run by the Global and Regional Asperger Syndrome Partnership (GRASP), are often led by individuals with ASD themselves. Both have their advantages; the key is for the facilitator to be able to promote acceptance of others, provide modeling of appropriate group behavior, and provide appropriate social feedback. A facilitator should also be able to manage the logistics of the groups, such as meeting locations, agenda items, acceptance of new members, and other issues to keep the group running smoothly.
Most successful educational support groups for adults with ASD focus on three main components: support, skill building, and recreation. Starting each meeting with a sharing time can be helpful. During the group share, individuals can discuss issues they faced, problems that have arisen, or personal successes they’ve experienced. In this way, the group can learn from each other and offer one another advice and support. Often when a member shares a difficult experience, others in the group find that they have faced a similar issue or can help the others in some way. This sharing also allows the group to see that others are struggling and can help diminish feeling of isolation or diminished self-worth.
Skill building can also be an important focus of the support group. By addressing topics requested by the group, the facilitator can be sure that specific needs are being addressed. Once a topic list is generated, the group can decide whether they can learn about the skill internally, or whether guest speakers or information should be brought in from outside the group to address the skill. Topics can be in a wide range of skill development, such as money-management, health and exercise, dating, or job interviews.
A third main component of quality support groups for adults with ASD is recreation. Many adults on the spectrum report that they have few opportunities for leisure with peers, and this can be an important part of building friendships. Groups can devise an agenda that includes activities that many members enjoy, or something new for everyone to try. Activities like game night, bowling, dinner at a restaurant, or live music at a coffee house have all been successful recreational opportunities for some groups.
Many established groups are available across the nation, particularly in metropolitan areas, but there are adults who can benefit from educational support groups in every community. National resources like GRASP have regional support groups, or contact your local autism provider to request a group in your area.
Beth Myers is Director of Programs and Educational Services at The Kelberman Center. Beth has a Masters in Education and is a candidate for Doctorate of Education at the University of Pennsylvania. Rob Myers is the Director of Consultation and Behavioral Services at The Kelberman Center. Rob trained with The Lovaas Center and is a candidate for Masters in Public Administration at the Maxwell School of Syracuse University.
The Kelberman Center is a 501(c)3 non-profit agency affiliated with Upstate Cerebral Palsy in Utica, New York. The Kelberman Center was established as a regional center of excellence for individuals with autism spectrum disorders and related learning challenges and provides a wide range of diagnostic, consultation, educational and support programs for children and adults from the Central and Upstate New York region. For more information about the Kelberman Center, please visit www.kelbermancenter.org or call 315-797-6241.