Long Island Behavior Analysis Conference

The Importance of Community Social Participation for Adults with ASD

Over the past ten years, researchers have been investigating the quality of life and overall functioning of adults with ASD (Orsmond, G.I., et al., 2013; Billstedt, E., et al., 2011; Robertson, S.M., 2010; Renty, J.O. & Roeyers, H., 2006). A consistent finding across these studies is the importance of social participation and its correlation with improved quality of life. These studies describe the negative impact of social isolation and lack of community integration for adults with ASD, emphasizing the need for more social support resources.

Transition to Adulthood

The transition to adulthood brings new challenges for maintaining and developing social relationships. Friendships formed in elementary or high school may be difficult to maintain due to less frequent contact (Orsmond et al., 2013). Many adults with ASD do not drive and may become isolated after graduation if they do not have access to transportation. Data from the National Longitudinal Transition Study-2 revealed that young adults with ASD are more likely to experience social difficulties than other special needs groups. They are less likely to see friends, be called or invited to social activities (Orsmond et al., 2013). Young adulthood is now seen as a high-risk period for the development of mental health conditions, particularly anxiety and depression in this population.

Lack of Social Experiences

Billstedt et al. (2007) found that fewer than half of adults with ASD participated in any social events (attending church, special interest groups, concerts, recreational activities) in their respective communities. While many adults with ASD use social media and have social interactions online, they do not typically have relationships with individuals in their community to engage in shared activities, recreation or community volunteer involvement. For many the internet is their only link to the outside world and they do not receive the social cues necessary to decode social behavior. It is important to recognize that face-to-face social interactions are essential in helping adults with ASD learn to navigate the social world and provide a sense of belonging and inclusion in the community at large.

Social Support Models

Two examples of successful social support models in the Philadelphia region are the “drop in” format and the scheduled “meet up” organization. The first example is exemplified by the Coffee House Center, which is directed by the Family Services Association of Bucks County (http://www.fsabc.org/program/aaces/). Founded in 2009, the Coffee House provides organized activities, discussion groups, guest speakers and casual conversation. Members can drop in for social experiences and are encouraged to attend frequently. They can meet other “like-minded” individuals with ASD from a wide geographic area who may share their interests. Unstructured social time and structured social activities are available. The second model is the New Horizons Club (http://www.newhorizonsclub.org/), which has been in operation for 11 years in the Philadelphia metropolitan area. New Horizons is a social support group with an emphasis on community integration. In addition to scheduled social activities, members engage in volunteer service such as feeding the homeless on MLK Day of Service, providing meals to shut-ins through Project Hope, local walks for Downs Syndrome and Alzheimer’s, assisting NAMI, and supporting canine friends at the Bucks County Canine Club. The club has a “mentor-in-chief” who organizes activities and provides real world mentoring. Activities are member-driven and are selected at a monthly meeting. New Horizons also provides opportunities for older members to mentor new members and driving members offer ride sharing to events. The activities include a fall camp out and a 5 day beach trip.

Each of these programs contains elements that appear essential to providing successful social experiences for adults with ASD: 1) acceptance, 2) emotional and physical safety, and 3) mentoring. Adults with ASD must feel that they are accepted as individuals and valued for their uniqueness. Many have experienced stigma and exclusion in a variety of settings and need to feel free to be themselves without being judged. They must also have a sense of safety in order for them to take social risks. They need to know that the environment does not tolerate bullying or sexual harassment. They must know that they can seek the support of mentors and other group members when feeling socially uncomfortable. Adults with ASD may have a history of trauma in relation to social situations and they may need a 1 to 1 mentor initially until their social anxiety lessens. It is important to allow each individual to socialize at their on pace and avoid expectations for participation from the outset. In addition, these models allow for age-appropriate adult activities such as a New Year’s Eve party or attending concerts or film festivals. The members suggest and plan activities that interest them.

As the adult ASD population continues to increase it is critical that these adults be given the necessary social supports in their communities. The benefits provided by these social supports will expand the social repertoire of adults and empower them to develop friendships, reduce feelings of isolation and increase their sense of societal acceptance and inclusion.

 

Mary Riggs Cohen, PhD, is a licensed psychologist specializing in Autism Spectrum Disorders and is the Director of Autism Spectrum Diagnostics & Consulting. Brittany Lyman, PsyD, is a licensed psychologist specializing in Autism Spectrum Disorders. Drs. Cohen and Lyman can be contacted at info@autismdiagnostics.com or visit their website www.autismdiagnostics.com.

References

Billstedt, E., Gillberg, I.C. & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15(1), 7-20.

Orsmond, G. I., Shattuck, P. T., Cooper, B.P., Sterzing, P.R. & Anderson, K.A. (2013). Social participation among young adults with an Autism Spectrum Disorder. Journal of Autism and Developmental Disorders 43(11) 2710-2719.

Renty, J. O. & Roeyers, H. (2006). Quality of life in high-functioning adults with Autism Spectrum Disorder. Autism, 10, 15-24.

Robertson, S.M. (2010). Neurodiversity, Quality of Life, and Autistic Adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly 32.

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