| 1. |
- Black, Melissa H., et al.
(författare)
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Multi-informant International Perspectives on the Facilitators and Barriers to Employment for Autistic Adults
- 2020
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Ingår i: Autism Research. - : John Wiley & Sons. - 1939-3792 .- 1939-3806. ; 13:7, s. 1195-1214
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Tidskriftsartikel (refereegranskat)abstract
- Employment rates for autistic individuals are poor, even compared to those from other disability groups. Internationally, there remains limited understanding of the factors influencing employment across the stages of preparing for, gaining, and maintaining employment. This is the third in a series of studies conducted as part of an International Society for Autism Research (INSAR) policy brief intended to improve employment outcomes for autistic individuals. A multi-informant international survey with five key stakeholder groups, including autistic individuals, their families, employers, service providers, and researchers, was undertaken in Australia, Sweden, and the United States to understand the facilitators and barriers to employment for autistic adults. A total of 687 individuals participated, including autistic individuals (n = 246), family members (n = 233), employers (n = 35), clinicians/service providers (n = 123), and researchers (n = 50). Perceptions of the facilitators and barriers to employment differed significantly across both key stakeholder groups and countries, however, ensuring a good job match and focusing on strengths were identified by all groups as important for success. Key barriers to employment included stigma, a lack of understanding of autism spectrum disorder (ASD) and communication difficulties. Results suggest that a holistic approach to employment for autistic individuals is required, aimed at facilitating communication between key stakeholders, addressing attitudes and understanding of ASD in the workplace, using strength-based approaches and providing early work experience. LAY SUMMARY: Autistic individuals experience significant difficulty getting and keeping a job. This article presents a survey study involving autistic individuals, their families, employers, service providers and researchers in Australia, Sweden, and the United States to understand their perspectives on the factors that support or act as barriers to employment. While perspectives varied across key stakeholders, strategies such as using a holistic approach, targeting workplace attitudes and understanding, focusing on strengths, and providing early work experience are important for success.
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| 2. |
- Black, Melissa H., et al.
(författare)
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Perspectives of key stakeholders on employment of autistic adults across the United States, Australia and Sweden
- 2019
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Ingår i: Autism Research. - : John Wiley & Sons. - 1939-3792 .- 1939-3806. ; 12:11, s. 1648-1662
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Tidskriftsartikel (refereegranskat)abstract
- Despite efforts to improve employment outcomes for autistic individuals, internationally their employment rates remain low. There is a need to better understand the factors influencing successful employment for autistic adults in the labor market from the perspectives of multiple keystakeholders. This study represents the second in a series of papers conducted as part of an International Society for Autism Research policy brief aimed at improving employment outcomes for autistic individuals. A community consultation methodology using focus groups, forums, and interviews was applied with autistic individuals (n = 19), family members (n = 18), service providers (n = 21), employers (n = 11), researchers (n = 5), and advocacy group representatives (n = 5) in Australia, Sweden, and the United States, aiming to identify the factors perceived to determine gaining and maintaining employment for autistic individuals. Directed content analysis, guided by the International Classification of Functioning, Disability and Health (ICF), was conducted to investigate the key factors influencing employment outcomes for autistic individuals. Meaningful verbal concepts, or units of text with common themes, were also derived from the qualitative data and then linked and compared to the ICF Autism Spectrum Disorder (ASD) Core-sets. Across countries, activity and participation and environmental factor categories of the ICF were the most associated with employment outcomes. Results suggest that removal of environmental barriers and enhancing environmental facilitators may assist to remediate ASD-related difficulties in the workplace.LAY SUMMARY: This study sought to understand the perspectives of autistic individuals and key stakeholders on factors influencing if autistic adults get and keep jobs. Across Australia, Sweden, and the UnitedStates, focus groups and interviews were conducted to understand international perspectives on what helps and hinders getting and keeping a job for autistic individuals. The environment, including supports, relationships, attitudes, and services, were perceived to be the most important for workplace success. Intervention targeting barriers and facilitators in the workplace environment may support autistic adults to be successful in the labor market.
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| 3. |
- Tammimies, Kristiina, et al.
(författare)
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Association between copy number variation and response to social skills training in Autism Spectrum Disorder
- 2019
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Ingår i: Scientific Reports. - : Nature Publishing Group. - 2045-2322. ; 9:1
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Tidskriftsartikel (refereegranskat)abstract
- Challenges in social communication and interaction are core features of autism spectrum disorder (ASD) for which social skills group training (SSGT) is a commonly used intervention. SSGT has shown modest and heterogeneous effects. One of the major genetic risk factors in ASD is rare copy number variation (CNV). However, limited information exists whether CNV profiles could be used to aid intervention decisions. Here, we analyzed the rare genic CNV carrier status for 207 children, of which 105 received SSGT and 102 standard care as part of a randomized clinical trial for SSGT. We found that being a carrier of rare genic CNV did not have an impact on the SSGT outcome measured by the parent-report Social Responsiveness Scale (SRS). However, when stratifying by pathogenicity and size of the CNVs, we identified that carriers of clinically significant and large genic CNVs (>500 kb) showed inferior SRS outcomes at post-intervention (P = 0.047 and P = 0.036, respectively) and follow-up (P = 0.008 and P = 0.072, respectively) when adjusting for standard care effects. Our study provides preliminary evidence that carriers of clinically significant and large genic CNVs might not benefit as much from SSGT as non-carriers. Our results indicate that genetic information might help guide the modifications of interventions in ASD.
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| 4. |
- Tammimies, Kristiina, et al.
(författare)
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Association between rare copy number variation and response to social skills training in autism spectrum disorder
- 2018
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Ingår i: bioRxiv. - : Cold Spring Harbor Laboratory.
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Challenges in social communication and interaction are core symptoms in autism spectrum disorder (ASD) for which social skills group training (SSGT) is a commonly used intervention. SSGT has shown modest but heterogeneous effects in clinical trials, and therefore identification of effect moderators could enable more precise intervention decisions. One of the major genetic risk factors in ASD are rare copy number variation (CNV). However, limited information exists whether rare CNVs profiles can be used to aid in intervention decisions. Therefore, we conducted the first study to date analyzing rare CNVs as genetic moderators in the outcome of SSGT in ASD. For this, we analyzed rare genic CNV carrier status of 207 children of which 105 received SSGT and 102 standard care as part of a recent randomized clinical trial for 12-weeks SSGT. We used mixed linear models to assess the association of being a CNV carrier, grouped by the effect and size of the CNVs and the primary response to SSGT, the parent-report Social Responsiveness Scale (SRS) measured at post-intervention and 3-months follow-up. Additionally, we analyzed the secondary outcome assessments included parent-rated adaptive behaviors (ABAS-II) and trainer-rated clinical global impression (CGI). We show that being a carrier of any size rare genic CNV did not impact on the SSGT outcome. However, when stratifying the groups by size of the CNVs, we identified that carriers of large CNVs (>500 kb) showed inferior SRS outcomes at post-intervention (β = 15.35, 95% CI 2.86-27.84, P=0.017) and follow-up (β = 14.19, 95% CI 1.68-26.70, P=0.028). Similar results were shown for the parent-rated secondary outcome. In contrast, the carriers of small CNVs had better outcome at post-intervention (β = -1.20, 95 % CI -2.0 - -0.4 P = 0.003) but not at follow-up for the trainer-rated secondary outcome CGI. These results remained when we tested the specificity of the effect by including the standard care group and adjusting for IQ levels. While our study suggests that being a carrier of any size rare genic CNV did not impact the outcome, it provides preliminary evidence that carriers of high-risk CNVs might not benefit on SSGT as much as non-carriers. Our results indicate that genetic information eventually might help guide personalized intervention planning in ASD. We additionally highlight that more research is needed to understand the intervention needs of autistic individuals with specified molecular alterations.
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| 5. |
- Thompson, C., et al.
(författare)
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Experiences of Parents of Specialist Peer Mentored Autistic University Students
- 2021
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Ingår i: Developmental Neurorehabilitation. - : Taylor & Francis. - 1751-8423 .- 1751-8431. ; 24:6, s. 368-378
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parents continue to support to autistic university students, and consequently, experience considerable stress.Aim: To explore the experiences of parents of specialist peer mentored university students and to examine these using the ICF as a theoretical framework.Method: Thirteen semi-structured interviews were completed and analyzed using thematic analysis. Directive content analysis linked the data to the ICF core set for autism spectrum disorders (ASD).Results: Five interrelated themes emerged: The mentoring relationship is a facilitator, Developing skills for university, Mentoring changes lives, Mentoring is not a substitute for other supports, and University is an emotional rollercoaster. Specialist peer mentoring was linked to Activity and Participation (44%) and Environmental factors (32%) of the ICF core set for ASD.Conclusion: These results add to the specialist peer mentoring evidence-base, and indicate perceived benefits for autistic university students and their parents. An unintended consequence was that parents broadened their participation in activities.
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| 6. |
- Thompson, Craig, et al.
(författare)
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To be understood : Transitioning to adult life for people with Autism Spectrum Disorder
- 2018
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 13:3
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The purpose of this study was to explore the viewpoints of parents of young people with Autism Spectrum Disorder (ASD) in relation to their child's transition to adulthood.Methods: Data were collected during four structured focus groups with 19 parents of young people with ASD with average to high intellectual capacities. Condensed meaning units were identified and checked during focus groups, and were subsequently linked to the International Classification of Functioning, Disability and Health (ICF).Results: Three major themes emerged: to be understood, to understand the world and to succeed. The ICF domains of activity and participation and environmental factors emerged as having the greatest potential to influence transition outcomes.Conclusions: Policies and services should focus on strengths to maximise participation in higher education, employment and independent living amongst young people with ASD. Interventions targeting environmental factors could be effective in improving participation in adult life. Person-centred and individualised approaches could further complement this approach supporting the transition to adulthood for people with ASD, ultimately improving outcomes in adulthood.
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| 7. |
- Thompson, Craig, et al.
(författare)
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Viewpoints on how students with autism can best navigate university.
- 2019
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Ingår i: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 26:4, s. 294-305
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Despite recognition of the challenges faced by students with autism spectrum disorders (ASD) there is limited understanding of the barriers and facilitators to participation in major life areas, such as being a university student.AIM/OBJECTIVE:This research aimed to examine viewpoints on what affects the success of Australian university students with ASD.MATERIAL AND METHOD:Q-methodology was used to describe the viewpoints of university students with ASD, their parents and their mentors, on success at university for students with ASD. A total of 57 participants completed the Q-sort.RESULTS/FINDINGS:Three viewpoints emerged; Individualised Support, Contextual Support and Social Support.CONCLUSIONS:This study highlighted that supports need to be individualized to the barriers and facilitators faced by Australian students with ASD. Supports also need to be contextualized to the built and social environments of universities.SIGNIFICANCE:This study supports the premise that environmental interventions can be effective in facilitating participation in major life areas, such as university education. Peer mentoring for students with ASD may have utility for this group, but should be extended to include social, emotional and psychological support.
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