Next Steps – Improving Transition Outcomes through Caregiver Education

Background:  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. The lecture material is tailored to two distinct trajectories: 1) “Steps To Independence” for caregivers of those likely to pursue post-secondary education, and 2) “Life Long Learning” for caregivers of those who will access programs through age 21 and require life-long supports.

Objectives:  To assess caregiver satisfaction with the curriculum of the Next Steps classes.  To measure caregiver concerns pre- and post-class participation.

Methods:  Course evaluations were collected at the end of the third class regarding participant satisfaction related to class design and curriculum content.  A survey questionnaire called Transitions Daily Rewards and Worries Questionnaire (Glidden & Jobe, 2007) was also used, which rates 28 statements such as “I am excited by the prospects for my child’s future,” on a Likert scale of 1 to 5 (Strongly Disagree to Strongly Agree).  This was mailed at the time of scheduling and collected before the first class began.   The questionnaire was re-administered after completing the third class.

Results:  Course evaluation and quantitative pre- and post-questionnaire data collection is ongoing. Currently we have 25 participant course evaluations (N = 25).  The average rating for the question “How would you rate the overall quality of content presented?” was a 4.72 out of 5 (3 = “good”, 4 = “very good” and 5 = “excellent”) with 19 participants (76%) indicating “excellent,” 5 (20%) indicating “very good,” and 1 (4%) indicating “good.”  To open-ended questions such as “Were the topics covered relevant? Meaningful? Did you learn something new?” 92% of participants indicated “yes” or an equivalent comment (e.g. “Topics were relevant, meaningful, helpful, resourceful,” and “I learned a lot, thanks!”). Themes of responses have included “increase in hope for my child” and “I learned from other parents and the instructor.” For the Transitions Daily Rewards and Worries Questionnaire, currently we have 18 participants (N=18) who completed both the pre- and post-test.  There was limited change pre-test to post-test among respondents and any change present was bi-directional.

Conclusions:  Transition to adulthood for ASD individuals poses unique challenges to caregivers. Administering transition-related curriculum in small group settings is not only feasible but is well received by participants.  Differentiating the curriculum based on trajectories is necessary in order to tailor the course material appropriately.  Feedback from caregivers has been overwhelmingly positive. Future direction includes improving our understanding of long-term impact of course participation and broadening delivery of the Next Steps course to additional demographics.