Social communication supports and services for adults with ASD: parents’ perceptions of barriers and needs

Wilson, Kaitlyn P.; Kaminski-Mainardi, Alexis; Tenbus, Julia; Marsack‐Topolewski, Christina N.

doi:10.1080/10522158.2021.1887037

Cited by 2 publications

(2 citation statements)

References 32 publications

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“…Other aspects of autism-specific support tailored to individual needs are missing from the interviews or are just rarely mentioned, although they are of great importance for the quality of life of autistic adults and their families ( 35 , 40 ). In contrast, in qualitative studies from the US, for example ( 25 , 41 ), parents mention autism-specific components of services as of key importance for them; specifically, support for socio-communication and behavior organization, and the training of professionals. The need for more diverse forms of support (e.g.…”

Section: Discussionmentioning

confidence: 99%

“…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%

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“…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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Section: Discussionmentioning

confidence: 99%

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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Telehealth-Delivered Supports for Daily Living Skills for Autistic Children: a Systematic Review

Clarke

McLay

France

et al. 2023

Rev J Autism Dev Disord

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The global prevalence of autism has increased markedly in recent years, resulting in a surge in demand for services. Telehealth interventions offer an alternative to traditional service delivery, however, research is needed to examine the effectiveness of telehealth-delivered interventions for daily living skills (DLS; e.g., sleeping, eating, personal hygiene). This review summarized and appraised 17 studies investigating the effectiveness and social validity of telehealth-delivered behavioral interventions (TDBIs) for DLS for autistic children. Most interventions were parent-implemented with clinician coaching via synchronous video coaching. Web-based resources and workbooks were standard features of interventions. TDBIs resulted in improved DLS for autistic children, however, a limited number of studies and lack of methodological rigor limit the conclusions that can be drawn. Avenues for future research are suggested.

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Social communication supports and services for adults with ASD: parents’ perceptions of barriers and needs

Cited by 2 publications

References 32 publications

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

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

Telehealth-Delivered Supports for Daily Living Skills for Autistic Children: a Systematic Review

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