“We believe in good jobs, fair jobs, dignifying jobs that give you a good sense of identity” 1 : Career and job guidance counseling in autism

Abstract

Work and employment are fundamental to societies and people, enabling adults to reach economic independence with dignity. Optimally, jobs allow individuals to pursue interests and talents to reach their full potential. Unfortunately, unemployment rates are still high among autistic individuals, and autistic adults and their parents have identified work and jobs as a priority area for research (Pellicano et al., 2014). Together with colleagues from the Center for Occupational and Environmental Medicine at Region Stockholm, Sweden, I am working on a project called “Jobba Frisk NPF” (engl.: “Work Healthy Neurodevelopmental Conditions”). Its objective is to generate evidence-based recommendations on how to identify and support career paths for autistic people and those with other neurodevelopmental conditions that lead to safe, long-term employment, and well-being on the job. The project is part of a more comprehensive effort by Region Stockholm, the responsible authority for health care in Stockholm County, seeking to ensure health and well-being at work for individuals with these conditions. While the project is run and financed by the Region, it is meant to be a national resource for all who are interested in the issue. The Region’s effort initially focused on individuals with physical conditions (e.g. allergy; www.jobbafrisk.se), but many career and job guidance counselors and people from the community requested information for neurodevelopmental conditions. Jobba Frisk NPF was subsequently initiated. I am excited to be part of the project and hope the platform will make a difference for many autistic people in Sweden. It is encouraging that the Region prioritizes autism and other neurodevelopmental conditions, but when I started working on the project I asked myself why a project like this is driven by health care authorities when the responsibility to ensure high quality career guidance in Sweden lies with the municipalities (schools and social services) and state (universities and job agencies). While there is at the moment a governmental proposal in Sweden aiming to improve career guidance in school in order to promote equality of career opportunity for students with disabilities, the initiative is still in the administrative pipeline, not explicit about neurodevelopmental conditions, and more strategic than hands-on.2 I am afraid that the reason is that many policy and decision-makers outside of health care do not realize that the lives of autistic people and those with other neurodevelopmental conditions are as much their responsibility as they are the healthcare system’s responsibility. We have discussed this bad state of affairs in prior editorials, for example, regarding inclusive education (Pellicano et al., 2018). Even health care has, for a long time, neglected neurodevelopmental conditions and is only slowly starting to recognize the importance of addressing the increase in diagnoses, high comorbidity, and premature mortality rates (Hirvikoski et al., 2016; Pan & Bölte, 2020; Zablotsky et al., 2019). I also wondered about current career and job guidance in Sweden with regards to autism and neurodevelopmental conditions. The Jobba Frisk NPF project is going to map current practice in detail. But briefly, the two most prominent sources of career and job support are counselors in schools and social services and job guides at the national health employment agency.3 Three universities (Stockholm, Lund, and Umeå) offer studies and degrees in career and job guidance. The secondary school years in Sweden also include two mandatory job practice experiences (“Prao,” praktisk arbetslivsorientering), but they are not professionally guided. High-school choice is decisive for career paths in Sweden as there are 18 regular national programs of 3 years to choose from, six of which are preparatory for higher education, such as university, and twelve of which are vocational. Here, career guidance is offered by schools, but individual support is limited. There also are more scattered public services and an increasing number of private companies trying to facilitate work opportunities. Typically, these options lack continuity and coordination, they are not standardized across the country, they have rarely been evaluated properly, and there are no guidelines supporting appropriate career and job guidance counseling in autism and other neurodevelopmental conditions. I could not spontaneously name colleagues conducting research in autism and career guidance counseling or name any prominent articles or reviews on the topic. This, despite the fact that I have worked in closely connected fields and helped generate the International Society of Autism Research (INSAR) policy brief,4 which is based on a systematic review, and a qualitative and quantitative study (Black et al., 2019, 2020; Scott et al., 2019), as well as other neighboring issues such as mentoring programs at universities and the “We believe in good jobs, fair jobs, dignifying jobs that give you a good sense of identity”1: Career and job guidance counseling in autism 990325 AUT0010.1177/1362361321990325AutismEditorial research-article2021