Parent Perspectives on Supports and Barriers for Autistic Youth Transitioning to Adulthood

Hoffman, Jenna M.; Kirby, Anne V.

doi:10.1007/s10803-021-05273-5

Cited by 10 publications

(3 citation statements)

References 43 publications

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“…Although there are over four times as many adults on the autism spectrum than children, there is a dearth of services for this subsection of the autism spectrum disorder (ASD) population (Anderson & Butt, 2018; Shattuck et al, 2020). Accessing appropriate services for adults on the autism spectrum can be challenging (Hoffman & Kirby, 2021; Marsack-Topolewski & Graves, 2020; Taylor & Henninger, 2015; Vohra et al, 2014), with barriers including a lack of evidence-based practices for this population, long waitlists, lack of funding or insurance coverage, and few providers with relevant experience in the local community. As a result, families often have few formal support services in place to aid in caring for their adult children on the autism spectrum and helping them live independent lives when they age out of public-school services (Shattuck et al, 2011).…”

Section: Theoretical and Research Basis For Treatmentmentioning

confidence: 99%

“…The task of helping adults on the autism spectrum transition to living more independently and meeting their goals often falls on their caregivers (Taylor et al, 2017). However, many caregivers report feeling unprepared or unequipped to better understand the unique characteristics present in adults on the autism spectrum (Hoffman & Kirby, 2021). It is not surprising that caregivers of individuals on the autism spectrum with greater levels of challenging behaviors reported significantly more caregiving struggles and worse caregiver well-being (Barker et al, 2011; Burke & Heller, 2016).…”

Section: Theoretical and Research Basis For Treatmentmentioning

confidence: 99%

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An Intervention Program for Families of Adults on the Autism Spectrum: A Case Study

Tagavi

Stobbe

Bearss

2023

Clinical Case Studies

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Caregivers of adults on the autism spectrum report having limited access to resources that aid in supporting their child and helping them lead more independent lives. There is a need for interventions designed to teach caregivers strategies that address challenging behaviors, as well as promote independence. Using a case study design, we evaluated the preliminary feasibility and acceptability of Research Units in Behavioral Intervention (RUBI) with caregivers of three adults on the autism spectrum. Outcomes support preliminary feasibility and acceptability, as indicated by low attrition (0%) and high adherence to the RUBI manual (mean adherence = 91%). Following intervention, all adults on the autism spectrum demonstrated decreased levels of challenging behaviors and increased independence. The results of this study provide insight on next steps for investigation, including avenues for RUBI adaptation when delivered to adults on the autism spectrum and their families.

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Section: Theoretical and Research Basis For Treatmentmentioning

confidence: 99%

Section: Theoretical and Research Basis For Treatmentmentioning

confidence: 99%

An Intervention Program for Families of Adults on the Autism Spectrum: A Case Study

Tagavi

Stobbe

Bearss

2023

Clinical Case Studies

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“…Finally, a very important factor is the parents’ ability to gather information on services and activities, by mobilizing their own resources ( 8 , 16 , 22 – 24 ). Parents seem to base their service-related decisions mainly on the opinions of family members, acquaintances, parent organizations, and on information provided by the media and the internet, rather than on professional resources ( 10 , 25 ). The collected information is very uneven in quality, often insufficient in quantity, and difficult to understand ( 8 , 9 ).…”

Section: Introductionmentioning

confidence: 99%

“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study

Németh,

Győri,

Ehmann

et al. 2024

Front. Psychiatry

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IntroductionAdequate education, employment, and services for autistic individuals contribute significantly to their and their parents’ quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents perceive factors supporting/hindering access to services, and how they assess the quality of services.MethodsQualitative data provided by 12 parents via a semi-structured interview with a broader focus on parental quality of life and its factors were analyzed. Their autistic children were between 20 and 34 years of age. A thematic analysis was performed on parts of the narratives on their adult periods of life.ResultsA complex pattern of parental perception of supportive and hampering factors influencing access to services unfolded. The sparsity of services/activities and reliable information on them made the space for autonomous decisions on service take highly limited. Parents have modest expectations on quality of services, evaluating them along two key aspects: a safe, positive atmosphere, and communication between parents and professionals. Other aspects of individualized autism-specific support were not or just rarely mentioned.DiscussionParents perceive themselves as investing a lot of effort and resources in getting some form of regular service and/or activity for their adult child. However, these parental efforts often fail, their child becoming inactive, and dependent on their presence. This suggests system-level problems with services for autistic adults in Hungary, with literature showing it is not specific to this country.

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Barriers to Providing Transitional Supports for Autistic Students: Insights of School Professionals

LaPoint,

Kim,

Bottema-Beutel

2024

J Autism Dev Disord

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Parent Perspectives on Supports and Barriers for Autistic Youth Transitioning to Adulthood

Cited by 10 publications

References 43 publications

An Intervention Program for Families of Adults on the Autism Spectrum: A Case Study

An Intervention Program for Families of Adults on the Autism Spectrum: A Case Study

“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study

Barriers to Providing Transitional Supports for Autistic Students: Insights of School Professionals

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