“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

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 significance of environmental adaptation to autistic students’ needs (Leifler et al., 2020; Thompson et al., 2019, 2020).

After conducting a systematic literature search on the topic with the objective to prepare for a scoping review of career and job guidance counseling in neurodevelopmental conditions, ⁵ it is clear that there is very little research examining the matching of autistic characteristic and specific jobs requirements or on associated risks or aspects of well-being. There is helpful observational research from matching of skills and job profiles in general and related areas in autism, however, such as employment rates, employment programs, and forms of employment; strengths, weaknesses, interests, and preferences of autistic people; facilitators and barriers in the work environment; educational and vocational transitions; prognostic work factors of health and quality of life; interventions related to work (e.g. skills training, training on the job, and cognitive and interview training); organization of services around employment; and good practice in career and job guidance counseling, just to mention a few. My impression is that the autism-specific research predominantly examines how to employ autistic people at all, rather than investigating an optimal match of individual and job, work safety, and well-being.

The lack of research was discouraging for the Jobba Frisk NPF project. We also received contradictive feedback from experienced career and job guidance counselors who are on the advisory team. They were not only very supportive and confirmed the project’s significance but also recommended caution when generating “manuals,” “checklists,” or “guidelines” for career and job guidance in autism and other neurodevelopmental conditions. In their view, all career and job guidance must be highly individualized and codifying career and job guidance for autistic people and those with others with neurodevelopmental conditions could be considered malpractice.

I would like to give several reasons for why creating this type of manualized content is important. First, I have often encountered that even the most experienced professionals show a good deal of space for improvement of their autism skills and practice. Some practitioners falsely perceive scientific findings as irrelevant or useless for their practice. Everyone of course agrees that there is no cookbook, and autistic people must be treated individually in career and job guidance but apparently this is currently not happening sufficiently. What exactly hinders career and job guides already today from implementing highly individualized solutions for autistic people in practice?

All professionals can be better at what they are doing to serve their clients and there is no better strategy to achieve it than by translating research into useful, standard practice. This is even true for the most experienced experts, who over the years might have developed or conserved obsolete attitudes paired with resistance to change and limited self-insight. It is not a lèse-majesté to use manuals, checklists, or guidelines. Many autism clinicians and researchers use manuals and checklists more and more every day, and they are a tool to improve practice. In Sweden, it took until 2009 before checklists became mandatory in surgery, after studies showed a significant positive impact on patient safety, post-surgery complications, and mortality (Gustafson et al., 2018). These checklists include basic points, such as ensuring that the correct patient is on the sick bed, the team greets, and presents themselves to each other and that all tools and materials are back where they belonged after the operation. Professional resistance to such checklists had been massive initially, and they were deemed an unnecessary burden to staff (Treadwell et al., 2014). In this context, it is of paramount significance that research on the work performed by career and job guides indicate that there is a risk that basic aspects of good practice (e.g. analyzing school and work biographies, including relative’s experiences) are regularly left out in daily work practice (Migliore et al., 2010), indicating that simple checklists probably would be helpful.

Second, and most importantly, there is evidence from career and job guidance research in general, and autism and other neurodevelopmental conditions, in particular, which can inform practice. This editorial does not provide a comprehensive review, but here some of the most essential ingredients in a manual and checklist should entail in terms of do’s and don’ts:

It is critical to move from a problem-oriented view regarding autism and work to a possibility-oriented view. Career and job guidance counselors must focus on inventorying strengths, interests, and preferences of autistic people and identify supportive facilitating environments as well as appropriate career paths matching these. Strengths may be attention to detail, attention focus, logical thinking and systemizing, visual skills, numeracy, specific expertise, and work requiring repetitive action (Baldwin et al., 2014; Black et al., 2019; Lorenz & Heinitz, 2014).

Career and job guidance counselors also should provide job-related advice regarding handling and disclosure of diagnosis and help with work-related stress and conflict avoidance. Currently, research indicates that career and job guidance counselors are not helpful to autistic individuals for career planning and decisions, employment, and well-being on the job; about half of autistic individuals do not meet with career and job guidance counselors at all (Briel & Getzel, 2014).

Studies show that autistic people work in diverse jobs. Autistic individuals may be overrepresented in science, education, architecture, libraries administration, culture, economy and production of raw material, and underrepresented in tourism, sales and the general service sector (Frank et al., 2018; Lorenz & Heinitz, 2014).

While there are no jobs that autistic people are a priori unqualified for, there are autistic traits which counselors must keep in mind when helping with person-job match. For example, workplaces with a high social load and communication requirements may pose a barrier for autistic people (Chen et al., 2015). The same is true for unstructured, chaotic, unpredictable, and stressful environments with sensory exposure, high demands on verbal skills, cognitive flexibility, and group work as well as vaguely or broadly defined work descriptions (Noel et al., 2017). Most of the negative causes of job termination relate to such factors in autism (West et al., 2015). Still, autistic people should be assessed individually using assessment center to determine their fit for any given job and considered for a position as typical people if they pass.

Mental and physical health issues, such as anxiety, depression, sleep problems, and autistic burn-out, may impede autistic people from maximizing their work potential and complicate successful employment and well-being on the job. Counselors should aim not to confuse the autistic person’s general capacities with psychiatric issues (Baker et al., 2019; Noel et al., 2017).

Lack of work experience is the top barrier to employment for autistic people. A priority for career counselors and job guides is to ensure that autistic people obtain hands-on experiences as early as possible (Lee et al., 2020; Noel et al., 2017). Protected and especially supported employment may increase chances for subsequent competitive employment and usually have beneficial effects on the quality of life (Almalky, 2020; Pillay & Brownlow, 2017).

Career and job guidance counselors must perform a comprehensive and detailed analysis and map the autistic individual’s skill, interest, and preference profile and the specific job characteristic. Supports should relate to helping the autistic client become familiar with the work place, its culture, routines, and expectancies. These supports are potentially time consuming, requiring operational and strategic actions (Wehman et al., 2012).

Most work environments still lack an inclusive culture (Hagner et al., 2015). Therefore, career and job guidance counselors need to examine not only in detail the autistic person’s skills but also the job and job environment in all its facets. For instance, the work place culture toward diversity and stigma, the effect and handling of autism diagnosis disclosure, smells, lighting, temperature, visual distractions, clarity of procedures, location, and social expectations all can affect workplace performance and well-being (Pfeiffer et al., 2017).

Many studies find that a host of supports, including job preparation, training, and placement; interview training; mentoring; peer support; teaching compensatory strategies; skills training; and other related programs can increase employment and job-related mental health (Kaya et al., 2016; Pfeiffer et al., 2017; Pillay & Brownlow, 2017; Schall et al., 2020; Taylor et al., 2012).

Career-related transitions, for example, from school to post-secondary education or employment, are crucial life events, and particularly challenging for autistic people. Such transitions should be anticipated and planned for by career and job guidance counselors to ensure continuity of individual career development and avoidance of disruptions of career paths (Anderson et al., 2018; Hatfield et al., 2018; Sansosti et al., 2017).

In conclusion, there is little specific evidence on which jobs are the best fit for autistic people in terms of generating quality of life, minimizing work related risks, and generally make a good person-job fit. Research in the area may not yield strong evidence, given that autism is one of many traits of an individual, its heterogeneity of expression, and co-existing features. As a starting point, best practice of career and job guidance counseling in typically developing individuals should also apply to autistic people. However, it is of paramount significance that best practice is performed with all necessary resources, patience, good-will, and awareness of autism. Carefully applying evidence from closely neighboring fields is crucial to enhance the likelihood that autistic people ultimately gain satisfying and safe jobs matching their interests and level of skills. During my literature search, two articles caught my attention, which I deem are solid and hands-on in describing how constructive career and job guidance practice could look like and common deviations from it. Both Migliore et al. (2010) and Bross and Travers (2017) convey nicely necessary actions for interest and skill identification in autism to achieve job development activities, occupational experiences, and prospective employment. In my view, there is sufficient research that can be translated to some form of standardized guidance and checklist to ensure completeness and quality of action in career and job guidance practice. I am also sure it can be done in a way appreciated by career and job guidance counselors and others involved supporting autistic people who might have reservations and doubts that such recommendations can enhance practice. This will be the mission of the Jobba Frisk NPF project.

Sven BölteKarolinska Institutet & Region Stockholm, Sweden