Nancy C. Cheak-Zamora

Disparities in Transition Planning for Youth With Autism Spectrum Disorder

OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). METHODS: We used the 2005–2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12–17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD. RESULTS: Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance. CONCLUSIONS: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.

“You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.

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.

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.

Snapshots of Growing Up: Youth with Autism Explore Adulthood Through Photovoice.

Objective: Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood. We utilized Photovoice to better understand youths desires for and perspectives on becoming adults. Method: Youth with ASD (N = 11) photographed their life experiences, attended group and individual photo-sharing and discussion sessions, and exhibited their work publicly. Thematic analysis was used to identify salient recurring patterns in the data. Results: Thematic analysis identified important topics in session transcripts and 184 photographs. Youth with ASD expressed many perspectives about their adult lives, which centered around 3 themes: the meaning of adulthood; desire for independent living; and employment goals. Conclusion: Findings identified what youth with ASD want and need to achieve adulthood. This study demonstrated the utility of a new methodology to provide opportunities for youth to share their experiences and define their priorities.

Capturing Experiences of Youth With ASD via Photo Exploration Challenges and Resources Becoming an Adult

Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood, but we have few firsthand accounts of these issues due to youth’s limited participation in research. In this study, we utilized a qualitative methodology, Photovoice, to understand youth’s perspectives on becoming adults. We recruited 11 youth with ASD, aged 18 to 25, from urban and rural counties in Missouri. Youth described their experiences of becoming adults with pictures; attended group, individual, and discussion photo-sharing sessions; and exhibited their work publicly. This methodology facilitated dialogue and the collection of an array of data including 201 transcription pages and 184 pictures. Thematic analysis identified important topics and patterns. Youth’s discussions and photos captured difficulties transitioning out of school, socialization challenges, and their connection with animals. Five themes emerged: (a) difficulty transitioning into adulthood, (b) desires for and problems with relationship building, (c) feeling different from peers and family, (d) animals as a coping mechanism for negative feelings, and (e) animals as a source of companionship. This study is the first to elicit experiences of youth with ASD during the transition to adulthood and coping techniques. Although youth described many challenges, they showed resilience and used animals as a source of support and socialization.

A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder

ABSTRACT The transition into adulthood can be stressful and challenging for adolescents with autism spectrum disorder (ASD) and their caregivers. Few studies have examined the perspectives of adolescents with ASD and their caregivers during the transition to adulthood. This qualitative study utilized the method of four focus groups with 19 caregivers and 13 adolescents with ASD. Main themes of stress reported by participants included encountering challenges in accessing services, difficulties with adapting to transition changes and managing multiple responsibilities, and vocation and higher education challenges. Main themes of coping reported by participants included accessing support from community services, receiving support from family, friends, and teachers, and seeking opportunities for self-determination. These findings provide insight into adolescent and caregiver perceptions of the challenges they face when youth transition to adulthood with ASD, along with resources and coping strategies they have found helpful. Implications are provided to assist social workers and practitioners in supporting adolescents with ASD and their caregivers during the transition to adulthood.

Youth perceptions of stress and coping when transitioning to adulthood with autism: A photovoice study

Transitioning into adulthood can be challenging and stressful process for youth living with autism spectrum disorder. Few studies have examined the perspectives of youth with autism spectrum disorder during the transition to adulthood. Using the participatory methodology of photovoice among 11 young adults with autism spectrum disorder aged 18–23, this study’s aim was to identify strategies and resources youth with autism spectrum disorder utilize to cope with stress when transitioning to adulthood. Qualitative phenomenological analysis of participant narratives and photographs revealed four main themes. These included: (1) utilizing music, books, and physical exercise; (2) seeking support; (3) spirituality; and (4) building self-esteem and confidence. These findings provide insight into youth experiences of stress and coping when transitioning to adulthood with autism. Identifying the coping experiences of youth with autism spectrum disorder is important for the design of future programs, services, and policies supporting transition-aged youth with autism spectrum disorder.