Autism Spectrum Disorder (ASD) presents pervasive challenges across the lifespan. Systems of support exist for children affected by ASD, yet there are few resources available to assist youth and young adults with ASD during the transition to adult care. With an exponential growth in the number of young persons diagnosed with ASD moving into adulthood, it is important to consider the multidimensional shifts and changes associated with this transition for the individual, his or her parent/caregiver, care planning, service resources, and vocation and education. Inherent to these processes are multiple barriers, opportunities and disruptions that may require substantial adjustment, work, and time to understand and coordinate. The transitional period can be further confounded by impaired physical or mental abilities, pain, health setbacks, forced dependence, misconceptions about condition, and perceived outcomes and care needs. The combination and overlap of these factors that may occur simultaneously can render transitions extremely difficult, warranting comprehensive and individualized planning for young persons with ASD.
Objectives:
This study sought to understand: (1) needs, facilitators, and gaps related to transition, (2) key junctures of transition, and (3) perceived strategies for effective transition planning.
Methods:
Utilizing McCracken's Long Interview Method, 11 in-depth, semi-structured interviews were conducted with young persons (16-25 years of age) with ASD and/or her or his parent(s). A purposive sampling approach based on criteria of maximum diversity was used to ensure diversity across symptom severity and family demographics. Broad, open-ended questions were used in the exploration of the perspectives of both young persons and parents. Interviews were subject to concept saturation and theme generation, assisted by qualitative data analysis software (NVivo).
Results:
Data analysis is underway; however, several preliminary themes common to participant families have emerged, including: (1) key transition points at age 18, with the individual coming of legal age; and at age 20, when the individual is required to complete their final year of secondary education; (2) a dearth of systemic supports or resource guides to assist in navigating unfamiliar adult-based systems of care; (3) a marked end of regimented day programming and opportunities similar to the individuals’ neurotypical peers; (4) difficulty in obtaining and maintaining qualified and knowledgeable aides for the individual with ASD; and (5) despite the difficulties associated with the transition to adulthood, individuals and parents held hope for improved services and opportunities for adults with ASD.
Conclusions:
This study provides an understanding of the needs, facilitators, and gaps related to adult transitions from the perspective of both individuals with ASD and their parent(s). This information can be utilized to improve transitional and adult focused programs and services for individuals with autism and their families.
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