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Next Steps – Improving Adult Transition Outcomes through Parent/Family Education and Empowerment
Within the next 15 years, an estimated 500,000 children in the United States with autism spectrum disorder (ASD) will enter adulthood. Additionally, there has been limited research into adult services and outcomes. As a result, a challenge faces clinicians in providing families with evidenced-based transition tools in a manner that allows caregivers to build resiliency in becoming creative and flexible consumers for their young adult children. We have developed and implemented three consecutive 90-minute classes entitled “Next Steps,” focused on educating caregivers about transition related topics in small group settings. (See Figure 1. Curriculum Content). We have successfully conducted this class over the past 5 years and 205 families have participated.
Objectives:
To assess the impact of Next Steps classes on family empowerment and readiness for transition to adulthood.
Methods:
Course evaluations were collected from 13 families before and after the classes over 3 class cohorts to evaluate the impact of the Next Steps training on the Family Empowerment Scale. A survey questionnaire called Transition Daily Rewards and Worries Questionnaire (Glidden & Jobe, 2007) was also used.
Results:
On the Family Empowerment Scale, there was a statistically significant increase in the mean scores of the Service System subscale before Next Steps training (M = 44.38, SD = 6.23), and after training (M = 48.00, SD = 6.95). The mean increase in Service System subscale scores was 3.62 with a 95% confidence interval ranging from -6.77 to -.46. The Service System subscale is characterized as parental interactions with service systems to attain services needed by their child (Koren, Dechillo, and Friesen, 1992). The Service System subscale consisted of questions like, “My opinion is just as important as professionals’ opinions in deciding what services my child needs.” On the Transition Daily Rewards and Worries Questionnaire, there was a statistically significant increase in the mean scores of the Positive Future Orientation subscale before Next Steps training (M = 18.00, SD = 5.61), and after training (M = 21.31, SD = 9.92). The mean increase in Positive Future Orientation subscale scores was 3.31 with a 95% confidence interval ranging from -5.79 to .82. The Positive Future Orientation subscale is defined by general feelings of the parent surrounding their child’s future (Burke, Fisher, & Hodapp, 2012). The Positive Future Orientation subscale consisted of questions like, “I am confident that my child will be okay even after I die.”
Conclusions:
Transition to adulthood for individuals with autism poses unique challenges to caregivers. Administering transition-related curriculum in small group settings helps to empower families in accessing services and feeling more positive about the future. Future directions include improving our understanding of long-term impact of course participation, broadening delivery of the Next Steps to include non-English speaking families and including patients along with their caregivers in the Next Steps classes.