Pulling back the curtain: Issues in conducting an intervention study with transition-aged youth with autism spectrum disorder and their families

Abstract

The transition from high school to adulthood is difficult for youth with autism spectrum disorder and their families. Recognizing these challenges, there is a small but emerging body of literature testing interventions to improve the transition process. But there are many challenges in performing intervention research that have yet to be fully addressed. We discuss issues that should be considered when conducting interventions with individuals with autism spectrum disorder to improve the transition to adulthood, drawing from our study of a parent training to facilitate access to adult services during the transition years. Issues covered include (1) timing (when is an intervention most effective?), (2) mode of delivery (what is the best way to present information?), (3) outcomes (how can intervention outcomes be accurately measured?), (4) target population (who is the intervention designed to help?), and (5) level of intervention (who should the intervention target?). Our answers, though preliminary, show the need to be flexible, to adopt a trial-and-error stance, and to listen to the needs-both explicit and implicit-of youth with autism spectrum disorder and their parents as they navigate the difficult transition from adolescence to adulthood.

Legislative Advocacy Among Parents of Children With Disabilities

“…Participants emphasized that relationships with legislators were critical for promoting their disability-related issues. This finding is consistent with the literature about the value of social networking for facilitating parental (Burke et al, 2019) and legislative advocacy (Trainor, 2010; Wright & Taylor, 2014). Most advocacy trainings focus on increasing empowerment and knowledge among parents of children with disabilities (Magaña et al, 2015).…”

The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study

“…In this context, it is important to note that there is a lack of research programs on health services for adults with ASD. In particular, there is a need for the identification of comorbid health difficulties, development of new pharmacotherapies, investigation of transition and aging across the lifespan, and consideration of sex differences and of the point of view of people with ASD [ 1 , 28 , 29 ]. This has a profound impact on the provision of care and planning, especially when it comes to the assessment of each individual’s abilities, needs, and desires [ 30 ].…”

Proof of concept: The TRANSITION program for young adults with autism spectrum disorder and/or attention deficit hyperactivity disorder

“…Preparations before the individual enters adulthood are important, but the individual will most likely also need support once the new skills are to be applied in real life situations (i.e. in young adulthood) [51]. Here we focussed on young adulthood, since few support programmes are available for this crucial life period.…”