Abstract
As the number of those with autism spectrum disorder increases, the need for postsecondary transition services does as well. Current research acknowledges parents and caretakers as a vital part of the transition process, but there is currently no standardized way to include them. Through a systematic review process examining parent and family experiences, best practices were developed to increase feelings of preparedness and decrease anxiety for all parties.
Primary Author and Speaker: Erin McGee
Additional Authors and Speakers: Betti Ahmed
Contributing Authors: Christopher Trujillo
Research indicates a rise in the prevalence of ASD, and in 2018, according to the Center of Disease Control and Prevention (CDC), approximately 1 in 59 children are diagnosed with ASD every year. Over the next decade, we can expect to see an estimated 500,000 teens with ASD transitioning into adulthood and age out of school based autism services (Autism Speaks Inc., n.d.). Additionally, more than half of young adults with ASD are unemployed and unenrolled in higher education in the two years after high school and also have higher rates of social isolation (Autism Speaks Inc., n.d.; Singh, 2015). Though the children's parents are said to be pivotal in the transition process, there is no standardized way to include them in the planning process, which may lead to highly variable experiences and perception of preparedness to handle this time in their child's life. This systematic review aims to further identify factors that influence the experience parents with transitioning children on the spectrum face and to develop recommendations for best practices in regards to post-secondary transitions. A thorough search of web databases resulted in over 500 studies. Research criteria included studies examining parents' perspectives of the post-secondary transition of their adolescent with ASD as their primary diagnosis. The studies had to be in English and published in a peer-reviewed journal. All studies before 2009 were excluded to ensure relevancy. Quantitative and mixed method studies were also excluded, as the aim of this systematic review was phenomenological, or concerned with understanding the lived experiences of these families, which are better represented in qualitative terms. After eliminating articles based on title, abstract, and relevance of the complete article, eight met all inclusion criteria. Two student researchers independently completed data abstraction forms for each study then discussed their findings until agreement was reached on key findings. Thematic analysis was used according to strategies described by Creswell (2018) to evaluate the obtained data by conducting two levels of coding. Initially, each researcher coded the selected studies independently; these codes included the studies' found themes as well as raw data gathered from the studies' participant interviews. Following this, peer review and debriefing with both researchers occurred. Existing data was then re-coded and synthesized to finalize themes and sub-themes. Additional strategies were used to ensure trustworthiness of the data collected for this systematic review, such as a risk of bias analysis. This was done by assigning included studies a numerical value to the elements of credibility, transferability, dependability, and confirmability. A higher total score indicated a higher quality study, with the highest studies receiving 10/12 and lowest a 5/12. Additionally, an audit trail was maintained and an expert in the field of pediatric transitions was consulted regularly. Resulting themes were split into the parent experience and adolescent experience, allowing the researchers to compare and contrast experiences. The parent experience included sub-themes of psychosocial concerns, transition process, feelings about the future, and barriers to success. The adolescent experience included sub-themes of psychosocial concerns, transition process, and feelings of the future. Based on these themes and sub-themes, the following recommended supports and services are suggested for best practice: social and life skills training; early preparation for transition; mentorship and coaching for caregivers, faculty, and staff; and individualization of transition to promote independence, autonomy, and self-determination.
Creswell, J.W. (2018). Qualitative inquiry and research design. Choosing among five approaches. Third edition. Thousand Oaks, CA: SAGE.
Cheak-Zamora, N.C., Teti, M., & First, J. (2015). ‘Transitions are scary for our kids, and they’re scary for us’: family member and youth perspectives on the challenges of transitioning to adulthood with autism. Journal of Applied Research in Intellectual Disabilities, 28, 548-560. https://doi.org/10.1111/jar.12150
Singh, M. (2015). Young adults with autism more likely to be unemployed, isolated. Retrieved from https://www.npr.org/sections/health-shots/2015/04/21/401243060/young-adults-with-autism- more-likely-to-be-unemployed-isolated
Sosnowy, C., Silverman, C. & Shattuck, P. (2018). Parents’ and young adults' perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29-39. https://doi.org/10.1177/1362361317699585