Our 2019 research article ‘Nothing about us, without us: a case study of a consumer-run organization by and for people on the autism spectrum in the Netherlands‘ provides a good starting point for talking about autistic leadership. Rachel Worsley, founder and CEO of internet startup Neurodiversity Media, shares the latest research on her website. In her blog ‘What does autistic leadership look like in 2020’ she summarizes our article and combines this with her personal story of being an autistic leader.
Conversations around neurodiversity and autism are still largely focused on employing and retaining autistic talent. But we don’t hear much about the other end of the spectrum: the autistic leaders. I agree with Rachel on that.
A key theme in our study was how autistic adults perceive autistic leadership in the context of PAS, the Dutch self-advocacy organization of Persons on the Autism Spectrum. ‘Given that PAS is run and led entirely by autistic people, there appears to be no barrier of potential discrimination by others who don’t appreciate autistic strengths. But the researchers actually found that autistic leaders and employees were very critical of each other’s perceived leadership skills. For example, one person mentioned that some autistic leaders “either do not have emotional room for it or lack those skills”. Another person said that it’s harder for most autistic people to organise peer contact and displaying leadership in this space. These are comments from autistic people about autistic people, not neurotypical people. So what is with the implied internalised ableism?’, is the rightful question Rachel asks, based on our results.
Rachel doesn’t answer her own question. Instead, she states that it is even harder to thrive in a leadership position when you’re an autistic woman. Something that is in line with another key theme in our research, the invisibility of adult autistics, especially women. It’s important to raise awareness about the issues and needs of adults, especially, women with autism.
Two important solutions, or even prerequisites, I would say, to the struggle with leadership by persons with autism, are education and support. Educational programs, such as courses or personal development programs, should be flexible enough for autistic persons (employees and others, like freelancers or voluntary job workers) to develop leadership skills at their own pace.
Support is closely intertwined with yet another key theme we identified as important: collaboration between persons with and without autism. But, as our results show, most of our respondents have had negative experiences with support from or working together with professionals or parents. In the words of Mary, one of our respondents: ‘How do you prevent getting into an unequal relationship?’.
Rachel says about her experiences with support: ‘I’ve had negative experiences asking for help only to be dismissed, gaslit or invalidated because of communication misunderstandings. It is exhausting to learn how to ask for help the “neurotypical” way, so I would rather shut down and suffer alone.’ That doesn’t sound too promising.
Is it all bad? No. According to Rachel, she has been ‘incredibly blessed [with] two great leaders’ who have helped her in her professional career. She was undiagnosed at that time. ‘Would knowing about autism and ADHD have helped them manage me better?’, Rachel wonders. Maybe. Because, if you know that a person has autism or ADHD, how do you look at her then?
Rachel concludes: ‘So for all autistic leaders out there, let’s figure out better ways to get the support and understanding we need to thrive as leaders.’ I would like to add: ‘And let’s first start with making ourselves more visible. Let’s share stories of being an autistic leader (of whatever kind). So we know: we’re not alone.
Karin van den Bosch