Cora Taylor

Parenting Adults with ASD: Lessons for Researchers and Clinicians

Recent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insuffi cient transition planning for high school students, and generally insuffi cient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specifi c intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a). For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our fi eld has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specifi c intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuroplasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfi lling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, fi nancial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.

A pilot investigation of an iOS-based app for toilet training children with autism spectrum disorder

We developed an iOS-based app with a transmitter/disposable sensor and corresponding manualized intervention for children with autism spectrum disorder. The app signaled the onset of urination, time-stamped accidents for analysis, reminded parents to reinforce intervals of continence, provided a visual outlet for parents to communicate reinforcement, and afforded opportunity for timely feedback from clinicians. We compared this intervention with an intervention that uses standard behavioral treatment in a pilot randomized controlled trial of 33 children with autism spectrum disorder aged 3–6 years with urinary incontinence. Parents in both groups received initial training and four booster consultations over 3 months. Results support the feasibility of parent-mediated toilet training studies (e.g., 84% retention rate, 92% fidelity of parent-implemented intervention). Parents used the app and related technology with few difficulties or malfunctions. There were no statistically significant group differences for rate of urine accidents, toilet usage, or satisfaction at close of intervention or 3-month follow-up; however, the alarm group trended toward greater rate of skill acquisition with significantly less day-to-day intervention. Further development of alarm and related technology and future comparative studies with a greater number of participants are warranted.