Lifespan service receipt and unmet needs among individuals on the autism spectrum

Song, Wei; Salzer, Mark S.; Nonnemacher, Stacy; Shea, Lindsay

doi:10.1007/s10488-022-01192-4

Cited by 6 publications

(10 citation statements)

References 46 publications

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“…One review article noted that under‐represented study participants included autistic individuals who were women, transgender, non‐White, low income, and those with intellectual disability or with minimal speaking communication (McGhee Hassrick et al, 2021). Nine studies utilized self‐reported responses of autistic individuals (Fernandes et al, 2021; Hotez et al, 2022; McGhee Hassrick et al, 2020; Song, Nonnemacher, Miller, Anderson, & Shea, 2022; Song, Salzer, Nonnemacher, Miller, & Shea, 2022; Song, Salzer, Nonnemacher, & Shea, 2022; Sosnowy et al, 2018; Sosnowy et al, 2019; Steinberg et al, 2022). Six articles included autistic co‐authors on the writing team (Lord et al, 2022; Roux et al, 2019; Roux, Rast, Anderson, et al, 2020; Roux, Rast, Garfield, et al, 2020; Shattuck et al, 2020; Steinberg et al, 2022).…”

Section: Resultsmentioning

confidence: 99%

“…In regard to the main findings of individual ATRP‐funded studies, results verified high rates of co‐occurring health and mental health conditions beginning in adolescence and use of polypharmacy (Kerns et al, 2020; Rast et al, 2021), along with utilization of emergency department and inpatient hospitalizations often related to psychiatric diagnoses (Rast et al, 2022; Schott et al, 2022b). Studies documented how autistic youth are less likely to have their health and mental health needs met or to have positive care experiences (Fernandes et al, 2021; Roux et al, 2022), and how drop‐offs in utilization of some services (speech therapy, occupational therapy, one‐on‐one supports) begin as early as high school (Benevides et al, 2022; Song, Salzer, Nonnemacher, & Shea, 2022). While case management and mental health service use increased in young adulthood, unmet service needs also increased during this period (Song, Salzer, Nonnemacher, & Shea, 2022).…”

Section: Resultsmentioning

confidence: 99%

“…Studies documented how autistic youth are less likely to have their health and mental health needs met or to have positive care experiences (Fernandes et al, 2021; Roux et al, 2022), and how drop‐offs in utilization of some services (speech therapy, occupational therapy, one‐on‐one supports) begin as early as high school (Benevides et al, 2022; Song, Salzer, Nonnemacher, & Shea, 2022). While case management and mental health service use increased in young adulthood, unmet service needs also increased during this period (Song, Salzer, Nonnemacher, & Shea, 2022). Suboptimal transition experiences were evident in that autistic TAYA were less likely to have preparatory experiences like participation in health care transition planning, college entrance exams, or paid work experiences during high school (Fernandes et al, 2021; Roux, Rast, Garfield, et al, 2020; Zablotsky et al, 2020); less likely to receive guidance from their doctor to understand changes during the health care transition (Zablotsky et al, 2020); and less likely to receive education to avert health risk behaviors (Graham Holmes et al, 2020), compared to their non‐autistic peers.…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

et al. 2023

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Few funding sources have explicitly supported systems‐wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition‐age youth and young adults. We aimed to integrate findings from research produced through a five‐year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP‐funded published scientific studies. We charted study characteristics, topical domains, socio‐ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio‐ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population‐level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

et al. 2023

View full text Add to dashboard Cite

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“…To date, few studies exist on older youth, and even fewer have featured their caregivers' voices. Parents report feeling as if they are “falling off a cliff,” referring to the dramatic drop in service availability after high school exit [ 1 , p. 25], and research broadly documents a high level of unmet service needs for older and transition-age youth compared to younger children [ 7 , 13 ].…”

Section: Introductionmentioning

confidence: 99%

“…Of specifc concern to families are problems encountered as youth age out of the school system and attempt to access adult systems of care. Te transition out of high school is often accompanied by a loss of service access and limited employment opportunities [5][6][7]. Despite their crucial role in interfacing with service providers, research has scarcely explored caregivers' voices regarding how service landscapes should best serve transition-age adolescents and young adults with ASD.…”

Section: Introductionmentioning

confidence: 99%

“Don’t Promise Something You can’t Deliver:” Caregivers’ Advice for Improving Services to Adolescents and Young Adults with Autism

Berg

Ishler

Lytle

et al. 2023

Autism Research and Treatment

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Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.

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Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice

Löthberg

Hirvikoski

Girdler

et al. 2023

J Autism Dev Disord

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In Sweden, people living independently and requiring daily living support can access ‘housing support’, a form of practical, educational, and social support provided by the municipalities. About two-thirds of those receiving this support have neurodevelopmental conditions, primarily autism or ADHD. Many are young adults in the process of adapting to new roles and expectations in different life domains, including education, work, and accommodation. This study aimed to provide a qualitative description of support workers’ views on current practice in housing support for young adults (aged 18 to 29) with neurodevelopmental conditions. Semi-structured telephone interviews were conducted with 34 housing support workers across 19 Swedish regions. An inductive qualitative content analysis approach was used. The interviews depicted a complex service, subject to organizational aspects (roles, responsibilities, availability, and allocation), the joint effort of key players (young adults, relatives, and support workers), and practical aspects of service provision (finding common ground for the work, and delivery of support). Some elements of the service were poorly designed for the target group. The support workers expressed a need for more knowledge about neurodevelopmental conditions, but also described new insights related to remote delivery of support. The results raise important questions about how housing support should be organized and delivered to strike the right balance between support and autonomy, meet specific needs, and ensure equal services across municipalities. Future research should adopt multiple perspectives and approaches, to help translate best practice and available evidence into a flexible and sustainable service.

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Lifespan service receipt and unmet needs among individuals on the autism spectrum

Cited by 6 publications

References 46 publications

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

“Don’t Promise Something You can’t Deliver:” Caregivers’ Advice for Improving Services to Adolescents and Young Adults with Autism

Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice

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