AUT*CIA – Equal Opportunities for Severely Disabled Women with HFA⁠/​AS in Working Life

What were your goals in the project AUT*CIA?

Within the AUT*CIA project, we aimed to examine the specific situation of autistic women regarding the challenges they face in their working lives. Our goal was to identify the factors hampering equal and sustainable employment participation of these women. We especially sought to explore the impact of late autism diagnoses on the professional trajectories of autistic women and the resulting disadvantages they experience at their workplace in more detail. One of the few studies on this topic by Taylor et al. (2019) highlights that autistic women often face distinct challenges, which have so far received little attention from a gender-specific perspective. Identifying and understanding these challenges was a central research task, as previous studies on autism and employment in Germany have not provided gender-specific analyses. Another key aim was to investigate the existing support structures to determine what kind of assistance is available to affected women and how these might be expanded or adapted. Based on our scientific findings, we wanted to develop new, tailored offers within the project to support autistic women in maintaining long-term employment. To this end, we adopted a mixed-methods approach, using structured guideline interviews informed by an online cross-sectional study to gain comprehensive and in-depth insights. Our aim was to thoroughly capture the individual experiences and needs of autistic women as well as the systemic factors contributing to their disadvantage at their workplace.

Are there any topics and focal points that have turned out to be particularly important for you in the project when it comes to pursuing these goals? If so, which ones?

The findings from the AUT*CIA research project indicate that autistic women face more challenges in working life than autistic men. This discrepancy became especially clear in the results of the cross-sectional study we conducted. Autistic women reported increased stress in social interactions, communication, and exposure to sensory stimuli in the workplace. It was also found that autism was diagnosed significantly later in women (on average at around 30 years of age) than in the men surveyed (on average at around 23 years of age). The interviews conducted within the project also highlighted the importance of translating persons – individuals who help interpret social contexts – particularly for autistic women. The women we spoke to emphasised how having contact persons allowed social conflicts to be resolved in a low-threshold manner and solutions to be found. A significant aspect of the study is the fact that many of the autistic women interviewed reported deliberately masking their autistic traits. This is experienced by autistic individuals as extremely exhausting and consumes a great deal of energy. Another crucial finding is the link between health and stress: when facing difficulties at work, the autistic women reported increased psychosocial stress, which often led to serious mental and physical health issues. A significant proportion of the interviewees reported ongoing strain that resulted in lasting impairment to their mental and physical wellbeing. The study also showed that many of the autistic women surveyed held high-level qualifications – a particularly striking finding, given that they were often unable to work in roles that matched their abilities due to workplace challenges or were severely limited in their performance as a result.

What were key challenges you faced during the project? What strategies did you use to deal with those challenges? 

One of the main challenges was to identify specific support services for the professional difficulties faced by autistic individuals. Despite the existence of counselling centres such as vocational integration services and many existing support offerings, it became clear that navigating the maze of available help is often extremely difficult for those affected – particularly during stressful life situations.

Following extensive research and based on our study findings, we therefore created an accessible website for autistic individuals – available at https://www.autismusundarbeit.de/ – which offers support and ideas for handling specific challenges in the workplace. In addition, we developed a section of the website specifically for employers, with the aim of providing them with relevant information on autism and access to appropriate points of contact. Based on the study results, we also produced short videos designed to increase understanding of autistic individuals – particularly autistic women.

Based on the insights and experiences gained during the project, what measures do you as most important when it comes to fostering the project’s aim? What are your recommendations in this context?

To promote equal opportunities for autistic individuals in the workplace, we believe it is essential to raise awareness about autism in many areas. A lack of knowledge leads to inadequate understanding of the specific characteristics of autistic individuals – particularly autistic women, who often mask their autistic behaviours and therefore attract less attention. This can result in significant emotional strain. Measures intended to improve the workplace situation of autistic individuals – such as psychotherapy or job coaching – may not be sufficiently effective if professionals lack knowledge of autism and its characteristics. This starts with career counselling, where the presence of trained specialists is crucial to address the individual traits and strengths of autistic people, as well as their personal circumstances. Through the AUT*CIA project, we hope to have increased awareness of autism in the world of work. In addition to the videos published on the website, the project also led to the production of a training video for representatives for employees with disabilities and inclusion officers, commissioned by the BIH.

What insights gained during the project do you consider as most important?

Many of the autistic individuals we interviewed told us that most people had no knowledge of autism or held outdated views. They reported that few therapists and doctors had any real understanding of autism – especially in relation to autistic women. These accounts align with the findings of a 2022 study by Lipinski et al., which showed that many individuals experienced their diagnosis as a great relief and wished they had received it earlier.

To make gender differences more visible, we also believe that future scientific studies should analyse data by gender. This is still not done consistently, meaning that important differences often go unnoticed.

Looking back on the aims and trajectory of the AUT*CIA project, where do you see a need for further research and which research questions would you name in this context?

We see a particular need for further research on individuals who identified as “diverse” in terms of gender in our cross-sectional study. This group also reported a wide range of stress factors and difficulties in the workplace like those experienced by autistic women. To gain a better understanding of this group, future research should focus more on their specific challenges and support needs.