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What is it like to be an openly autistic charity CEO?

“Recently I joined the PDA Society as its first CEO. In doing so I took a decision to share my autism diagnosis publicly for the first time. There’s only a handful of CEOs who are openly autistic. I’d love there to be more and for the term “openly” to hold no meaning.  I’m sharing my story here as I hope, along with others, it will help to nudge us forward”, writes Helen Evans.  

A narrated version of this blog is available at the bottom of the page

According to the National Autistic Society, “Autism is a lifelong developmental disability which affects how people communicate and interact with the world… Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses”. One in 100 people are estimated to be autistic and many autistic advocates embrace the social model of disability and view a range of neurological differences as being part of a natural human variation (neurodiversity).

As a child, I was perceived to be bright, but unable to make or sustain friendships especially at primary school. I was fortunate that my secondary school had small class sizes, valued diversity in all its forms and I formed a lifelong friendship. That said, I was often overwhelmed by the school environment, found it hard to complete a term and missed quite a bit of school, only to work diligently from the quiet of my bedroom. On paper I succeeded well, emotionally I felt drained.

By the time I entered the workplace, I had learnt to mirror ‘expected’ behaviours. I was consciously adapting the way I smiled, looked at people, greeted them, with the aim of fitting in. It was exhausting and when tired the mask could slip, confusing or taking colleagues by surprise.

I did, though, progress. Social justice has always been my special interest and I am hyper-focused, working relentlessly for the good of the organisation and the justice of the people it served. I increasingly used logic and social formulations to navigate my social and communication challenges and to aid the self-regulation of emotions.

However, it could only be sustained for so long.  To the outside world, I was successful, yet I struggled to communicate my feelings, although I felt them intensely, and I eventually became exhausted. In this emotional burn-out, I struggled to make sense of what was going on. When I received my diagnosis of autism it was a light-bulb moment of understanding and it all made sense.

Since being diagnosed I have a much better understanding of my needs in the workplace. I know I work best at home, where I can manage and modify my work environment. I flourish in being part of and managing smaller teams where the social dynamics are easier to identify and understand.

With my diagnosis I am also aware that to maintain emotional energy I need to be open and authentic; masking is not sustainable for me, the people I work with or the organisation. With only 21.7% of autistic people in work and one in three facing harassment and discrimination, I was worried telling people and working more authentically could be risky.

I’m privileged. I’ve found a neurodiversity charity, the PDA Society, where I can be my authentic self and be an openly autistic CEO and proud single mum in a role that plays to my strengths. My colleagues are genuinely curious about my needs, and this flows naturally through conversations. In turn, I feel able to articulate my needs without fear of judgement.

I’m leaning into my diagnosis, finding strength in acknowledging the things I find harder. I know I’m lucky, many others aren’t in an environment where this is possible. I hope, though, in sharing my story I can contribute a little towards changing that as we continue to build awareness and understanding.

Narrated by a member of the ACEVO staff

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