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'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism

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Bibliographic Details
Title: 'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism
Language: English
Authors: Cheak-Zamora, Nancy C., Teti, Michelle, First, Jennifer
Source: Journal of Applied Research in Intellectual Disabilities. Nov 2015 28(6):548-560.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 13
Publication Date: 2015
Sponsoring Agency: Health Resources and Services Administration (DHHS), Maternal and Child Health Bureau
Contract Number: H6MMC11059
Document Type: Journal Articles
Reports - Research
Descriptors: Adolescents, Autism, Pervasive Developmental Disorders, Focus Groups, Caregivers, Grounded Theory, Anxiety, Fear, Change, Adjustment (to Environment), Needs, Motivation, Access to Education, Equal Opportunities (Jobs)
DOI: 10.1111/jar.12150
ISSN: 1360-2322
Abstract: Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.
Abstractor: As Provided
Entry Date: 2015
Accession Number: EJ1076515
Database: ERIC
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Abstract:Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.
ISSN:1360-2322
DOI:10.1111/jar.12150