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. Autism Res 2020, 13: 1195-1214. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. 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.
Keywords: adults; autism; cross-cultural; employment; key stakeholders.
A geographic information system (GIS) approach systematically assessed whether population density and distribution of community resources contributed to caregiver reported community participation outcomes for 124 adults with autism spectrum disorder (ASD). Regression analyses examined whether GIS measures predicted community participation in areas of social activities and use of services, while also accounting for adult age, conversation ability, and daily living skills (DLS). Results indicated that in addition to person factors of greater DLS and better conversation ability, access to specific community features, such as bus stops, contributed to improved participation. Unexpectedly, population density where one lived made minimal contribution to participation outcomes, except in getting together with friends outside of organized activities.
Keywords: Adults; Autism spectrum disorder; Community participation; Geographic information systems (GIS); Services
When parents and teachers align their practices across home and school, it may optimize services for children with autism spectrum disorder (ASD). Partners in School is a multi-faceted implementation strategy designed to improve ASD services in schools. The goal is to increase parents’ and teachers’ use of evidence-based practices (EBPs) and to align those EBPs across settings. We piloted Partners in School with 49 parent-teacher dyads to assess administration and the factors associated with reported fidelity to the model. Specifically, we measured the number of intervention steps both parents and teachers completed (reported alignment) and the characteristics associated with intervention alignment. Partners in School involves parent-teacher participation in a pre-consultation interview, an in-person consultation meeting, active implementation of the same EBPs in their respective settings, and a post-consultation interview. Parents and teachers also completed surveys pre- and post-consultation. On average, parents and teachers completed approximately five EBP steps on their own in their respective settings (i.e., at home or at school). Of these five steps, parents and teachers both completed three of the same EBPs steps, on average. Different factors were related to reported alignment for parents versus teachers; however, a similarity noted for both parents and teachers was that communication variables were associated with reported alignment. Our findings indicate the important role of communication in aligning stakeholders for ASD service delivery models.
Keywords: Autism; Autism services; Communication; Evidenced-based practices; Implementation science; Parent–teacher relationships; Service delivery
Background: COVID-19 restrictions have significantly limited access to in-person educational and healthcare services for all, including individuals with intellectual and developmental disabilities (IDDs). The objectives of this online survey that included both national and international families were to capture changes in access to healthcare and educational services for individuals with IDDs that occurred shortly after restrictions were initiated and to survey families on resources that could improve services for these individuals.
Methods: This was an online survey for caregivers of individuals with (1) a genetic diagnosis and (2) a neurodevelopmental diagnosis, including developmental delay, intellectual disability, autism spectrum disorder or epilepsy. The survey assessed (1) demographics, (2) changes in access to educational and healthcare services and (3) available and preferred resources to help families navigate the changes in service allocation.
Results: Of the 818 responses (669 within the USA and 149 outside of the USA), most families reported a loss of at least some educational or healthcare services. Seventy-four per cent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through tele-education. Those that needed to access healthcare providers did so primarily through telemedicine. Telehealth (both tele-education and telemedicine) was reported to be helpful when available, and caregivers most often endorsed a need for an augmentation of these remote delivery services, such as 1:1 videoconference sessions, as well as increased access to 1:1 aides in the home.
Conclusions: COVID-19 restrictions have greatly affected access to services for individuals with syndromic IDDs. Telehealth may provide opportunities for delivery of care and education in a sustainable way, not only as restrictions endure but also after they have been lifted.
Keywords: Autism; COVID-19; Genetics; Intellectual disability; Parents.