Critical Reflections on Employment Among Autistic Adults.

Encouraging efforts have emerged in recent years to study and build employment opportunities for adults on the autism spectrum. In this Perspectives piece, we acknowledge this important work while offering critical reflections for consideration as the field of employment in autism advances. We call for five areas of increased focus: (1) nurturing long-term versus short-term employment success; (2) broadening employment readiness efforts beyond only the individual to the entire community employment ecosystem; (3) providing professional development that starts with an individual's strengths, and not with their disability; (4) building community employment support that can be independent of family support; and (5) striving for a good life versus just the next job. Overall, we aim to help galvanize the field toward greater consideration of individuals' quality of life and development, the broader community ecosystem around individuals and their families, and vocational stability over the life course, all on individuals' own terms. Lay summary: Why is this topic important?: Despite encouraging international efforts for the past 15 years to advance employment for autistic adults, a low percentage of autistic adults are employed at any given point in time. Moreover, research shows that some who are employed struggle in their work situations.What is the purpose of this article?: Our goal is to begin a conversation about what we believe to be promising areas of future focus in advancing employment for autistic adults. We hope that autistic adults and their families, practitioners, researchers, and policy makers find these reflections useful as we work together toward better employment options for adults on the autism spectrum.What is the perspective of the authors?: As advocates, practitioners, researchers, and as a family member for one of us, we believe it is time to look beyond employment statistics and a historically short-term focus on employment. We would like to see a reorientation of our collective energies toward a longer-term view of employment that contributes to a good life for individuals, on their terms.What is already known about this topic?: Over the last 15 years, many employment advancement programs for autistic adults have shown promising results. We have seen positive impacts from evaluations of these programs that include improved skills, more hiring of autistic individuals, shifting employer attitudes, more inclusive work environments, and high levels of productivity among hired autistic adults. We also have increased our understanding about the characteristics of supportive work environments for autistic people. That said, we also know that there are continuing low levels of employment for autistic adults. Furthermore, whereas there are some successful stories of autistic adults gaining employment, there are also, as noted earlier, stories of adults who are struggling in the workplace, with some in low-paying jobs and not able to use their skills.What do the authors recommend?: We recommend five shifts in focus for the future: (1) nurture long-term rather than short-term employment success; (2) seek community-wide programming to support people on an ongoing basis, as opposed to a more narrow focus on individual-level job readiness; (3) provide professional development that starts with an individual's strengths, and not with their disability; (4) develop more comprehensive and accessible community resources instead of relying on families to offset community service gaps; and (5) uphold the goal of having a good life on one's own terms instead of only getting a job.How will these recommendations help autistic adults now or in the future?: We hope that these recommendations help spark new conversations and collective approaches toward improving the employment landscape for autistic individuals. These approaches would move beyond a short-term job focus and individual-level readiness programming to also build supportive community ecosystems around individuals over time. In this way, we hope that individuals can more easily achieve employment over the long term that both works for them and contributes to the important and overarching aim of quality of life.

Designing a program evaluation for a medical-dental service for adults with autism and intellectual disabilities using the RE-AIM framework.

INTRODUCTION: Robust evaluation of service models can improve the quality and efficiency of care while articulating the models for potential replication. Even though it is an essential part of learning health systems, evaluations that benchmark and sustain models serving adults with developmental disabilities are lacking, impeding pilot programs from becoming official care pathways. Here, we describe the development of a program evaluation for a specialized medical-dental community clinic serving adults with autism and intellectual disabilities in Montreal, Canada. METHOD: Using a Participatory Action-oriented approach, researchers and staff co-designed an evaluation for a primary care service for this population. We performed an evaluability assessment to identify the processes and outcomes that were feasible to capture and elicited perspectives at both clinical and health system levels. The RE-AIM framework was used to categorize and select tools to capture data elements that would inform practice at the clinic. RESULTS: We detail the process of conceptualizing the evaluation framework and operationalizing the domains using a mixed-methods approach. Our experience demonstrated (1) the utility of a comprehensive framework that captures contextual factors in addition to clinical outcomes, (2) the need for validated measures that are not cumbersome for everyday practice, (3) the importance of understanding the functional needs of the organization and building a sustainable data infrastructure that addresses those needs, and (4) the need to commit to an evolving, "living" evaluation in a dynamic health system. CONCLUSIONS: Evaluation employing rigorous patient-centered and systems-relevant metrics can help organizations effectively implement and continuously improve service models. Using an established framework and a collaborative approach provides an important blueprint for a program evaluation in a learning health system. This work provides insight into the process of integrating care for vulnerable populations with chronic conditions in health care systems and integrated knowledge generation processes between research and health systems.

Market Segmentation as a Tool to Inform Health and Social Services Policy and Planning: The Case of Autism Spectrum Disorder and Intellectual Disability.

In the absence of complete public surveillance data, estimating the prevalence and needs of sub-groups of heterogeneous populations is nonetheless critical to properly inform health and social services planning and policy. We thus introduce market segmentation as an innovative tool for health and social services planners and policy makers. Segmentation is a process whereby broad populations are categorized into sub-groups with common characteristics and needs. Using the example of autism spectrum disorder and/or intellectual disability in Quebec, Canada, we triangulate available data and mathematical problem solving to present a portrait of the varying support needs of this under-served, yet growing, population.

The Case for Information Brokering During Major Change: The Experience of the Transition Support Office of the McGill University Health Centre.

This paper describes the emergence of an "information brokerage" in the project management office of the McGill University Health Centre (MUHC) in Montreal. This process evolved during unprecedented transformation linked to a redevelopment project. Information brokering became a core function in the MUHC's context of major change. To develop an information brokering model, the paper draws upon the literature on knowledge brokering, applies Daft and Lengel's (1986) seminal framework on information processing in organizations, and builds on the MUHC experience. The paper proposes that knowledge brokering and information brokering are related, yet distinct in content, purpose and structure.