Adolescents with ASD and their Families: Perspectives on Needed Supports for the Transition from High School
to Adulthood
Erin Clancy, BSN, RN, Rachel Doty, MA, Annie Jennett, DPT, Rosie McAuley, Alyssa Wendling, Karen Burkett MS, PNP-BC, Sheryl Feuer, Somer Bishop, PhD., & Amie Duncan, PhD. Leadership Education in Neurodevelopmental and related Disabilities (LEND) Program The Division of Developmental and Behavioral Pediatrics Cincinnati Children's Hospital Medical Center The University of Cincinnati University Center for Excellence in Developmental Disabilities
Introduction
Adolescents and young adults with autism spectrum disorder (ASD) have significant difficulties in areas that are critical to making a successful transition to adulthood including post-secondary education, employment, social interaction, independent living, and leisure activities (see Hetherington et al., 2010 for a review). Most adults with ASD live with their parents or in supported living settings (Cedurland et al., 2008; Howlin et al., 2004). Approximately 56% of young adults with ASD reported having no friends with whom they shared activities, and only 26% had a relationship with a peer their age (Howlin, 2004). Adults with ASD experience high levels of unemployment and underemployment (Howlin, 2004; Eaves & Ho, 2008). Improvement in autism symptoms and maladaptive behaviors slowed significantly after adolescents with ASD graduated from high school (Taylor & Seltzer, 2010). Parental expectations and needs are important to understand, because they shape the attitudes and behaviors of their adolescent with ASD. They have also been shown to be related to aspects of independence, postsecondary education, and employment in young adults with other developmental disabilities (Wagner et al., 2003; Wagner et al., 1993). Few studies have investigated parent perspectives on the transition to adulthood or what supports and services parents identify as being beneficial, lacking, or needing improvement. Hetherington, et al. (2010) examined the educational transition process experienced by parents of adolescents with various disabilities and identified themes, such as inadequate communication between parents and school staff, insufficient transition planning, and decreased understanding about individual student needs.
Method
Participants
Participants were parents of adolescents with ASD who spoke in complex sentences and had an IQ>70. Parents were recruited from an ongoing research study at Cincinnati Childrens hospital about transition issues in adolescents with developmental disabilities.
Primary Themes
Social Issues and Relationships
Parents identified social impairments as an area of weakness, which included difficulties with: Romantic relationships Friendships and peer interactions Understanding social norms and expectations If he could at least have one friend who will look out for him, that he can trust, Im good with that.
Discussion
Parents raised concerns about social issues, independent living skills, services/supports, and stress and coping associated with transition. Surprisingly, employment and residential options were not raised as concerns. There was an observed absence of urgency in the tone of many parental responses regarding the impending transition. Collaboration between community providers, parents and schools is needed to facilitate the development and modification of services and supports.
Independent Living Skills
Parents expressed concerns about daily living skills, including: Obtaining functional skills Being able to manage money Using transportation, such as driving or taking the bus
The concerns identified in the current study represent a first step toward creating and improving services and supports.
Procedure
Focus Groups Two focus groups, each composed of 3 parents of adolescents with ASD, were conducted to obtain parent perspectives on the transition to adulthood. The focus groups were video and audio taped and then transcribed by the researchers. Focus Group Questions What does transition to adulthood for your adolescent with ASD mean to you? With what areas of transition are you familiar/unfamiliar? What is your biggest concern about the transition to adulthood? What concerns related to your childs transition to adulthood are being addressed? What services or supports have been helpful/not helpful? What services/supports do you wish were available?
He does stuff because Ive turned him into a robot with a schedule if it was up to him, hed be in a book or on the computer. And it might be three days later and hell say oh crap, I havent changed my clothes.
Limitations
Small sample size Limited diversity of parents and adolescents (e.g. gender, age, race, ASD symptoms) Selection bias
Services and Supports
Parents described their experiences navigating school systems and accessing community resources in terms of: Expectations of the schools role in transition planning Creating the IEP Parent school relationships Knowledge of available resources I go back to when he was first diagnosed. Like, youre in a room, its dark, theres tons of light switches around that can help you but you cant find any of them.
Next Steps
Additional focus groups should be conducted with larger, more diverse samples.
Specific supports for the transition process should be identified, developed, and made accessible to adolescents and their families. Investigate the perspectives of adolescents with ASD on their own transition needs. Explore the perspectives of healthcare providers and school personnel on transition concerns and available supports and services.
Stress and Coping
Parents communicated concerns regarding their ability to manage and cope with day-to-day and long term stressors including: Financial, time, and emotional costs Managing their emotions Maintaining a hopeful outlook for their child Relying on family members for support Effectively advocating for their childs needs But it shouldnt be like that, that we have to stress over the littlest things. Even just changing the bus driver. Every time we got a new bus driver, I had to start over again and explain just every little thing.
Increasing understanding of the needs and issues experienced by adolescents with ASD and their families would allow for the identification of specific supports and services that are needed in order to facilitate a more successful transition to the adult world after graduation from high school.
Analyses
The parent responses to the questions regarding primary concerns were coded for recurring themes in a three-step process. The researchers discussed field notes and patterns of observations from the focus groups. Each researcher coded one focus group transcription to identify recurring themes. The two groups met and consensus-coded to reach agreement on final themes and subthemes.
Selected References
Hendricks, D. R. & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88. Hetherington, S.A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., Taylor-Brown, S., & Tuttle, J. (2010). The lived experience of adolescents with disabilities and their parents in transition planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163-172.
Study Objective
To gain a comprehensive understanding of concerns related to the transition to adulthood in parents of adolescents with ASD
Special thanks to Cincinnati Walks Hands of DDBP at Cincinnati Childrens Hospital
