The visible autistic Leader leading the way for others to live authentic lives

In 2018, Helen Evans hit the headlines after she spoke out publicly about systemic sexual exploitation and abuse at Oxfam. She went on to give evidence to MPs and the Charity Commission, leading to changes in the way the charity sector is now regulated in respect of safeguarding.

Today she is an openly autistic CEO of the PDA Society, which supports people with Pathological Demand Avoidance, widely but not universally acknowledged as a profile of autism. She is also a single mum to an awesome autistic son and part of a wonderful neurodiverse family. She lives in Oxfordshire with her son and their dog Lizzy.

How did your autism diagnosis come about?

My son was diagnosed with autism in 2018. As we were going through the process, I recognised familiar traits in myself. I thought, hang on, this is very familiar, how did I miss this? It was so incredibly obvious. Getting diagnosed in 2020 was a positive experience. It helped me make sense of so much, giving me real insight into how I tick and how I can live an authentic and happy life.

Did being autistic play a part in your whistleblowing?

I believe being autistic helped me to speak out about the wrongdoing at Oxfam when I was the Global Head of Safeguarding. Like many autistic people, I have a strong passion for social justice.

As an autistic person I can at times be particularly focused and tenacious when things matter to me, and less deterred by hierarchy or social pressures.  I think these traits helped me to see through an exceptionally challenging time, as I experienced a backlash for speaking out.  Being a whistleblower can be tough, tougher than you could ever possibly think. It is though necessary.  In the press I was referred to as being brave.  I didn’t speak out because I was brave, and I certainly didn’t feel brave. I spoke out because others were brave and trusted me to speak out for them.

I recently spoke in some depth about my experience as an autistic whistleblower after Amy Richards kindly invited to contribute to the Squarepeg podcast, featuring women, trans and non-binary autistic people talking about their life experiences.

How has your journey been from leaving Oxfam to now?

I am now at a point where I’m incredibly proud to be an openly autistic CEO of a charity that has been transformative to the life of my family.

You shared your autism diagnosis publicly for the first time when you became CEO of the PDA Society. What made you decide to do this?

It’s a special thing in the charity sector to be in a role when it’s to do with something that is such a big part of your life. This is the first role where I’ve been openly autistic, and been with a group of people who understand me, accept me, and I can talk about it with… it’s been really liberating. Being my authentic self means I can live a happier and more fulfilling life.  When I joined, I wrote a blog about being an openly autistic CEO for the Association of Chief Executives of Voluntary Organisations. I said that I hoped in the future I wouldn’t need to qualify that I’m an ‘openly’ autistic CEO.  However, whilst only 1 in 5 autistic people are in the workplace and 1 in 3 people who work experience workplace harassment, many people still have understandable concerns about disclosing their diagnosis.  I hope this will change in the future and be helped by more autistic leaders coming forward to disclose their diagnosis.

How have people reacted when you’ve told them you’re autistic?

It’s been a mixed reaction when I’ve told people I’m autistic. There have been some positive responses, and some uncomfortable ones. But I never judge. I see it as an opportunity to start a conversation with someone about autism and to help them have a better understanding of what it means to be autistic. Autism is a spectrum and when I share my lived experiences, I also explain how others on the spectrum may have different experiences. I’m mindful that I’m in the minority as an autistic person in work and it’s important to acknowledge that.  Through these conversations I hope people’s understanding of autism will grow.

How does being openly autistic help you at work?

To be a visible autistic CEO for a charity so close to my heart is amazing.  There are huge strengths that I really value and am incredibly appreciative of. Being an autistic person in the workplace can also have challenges and we can’t detract from those.

One strength that I attribute to my autistic self in the workplace, is the ability to hyper focus. Working in the charity sector can be demanding with many competing asks of your time. I find I can work at pace as my passion for my area of work sees me through. In turn I also have to be mindful of the risk of burnout and need to work pro-actively to manage by mental and physical health.

Another strength is the logic that I can apply to complex problems. My brain as a default sees the risks, opportunities and weighs these up in a way that is akin to a logic flow chart. This can help me to work through organisational challenges. However, it has also meant at times earlier in my career I could appear dispassionate and lose sight of how others were feeling. Over the years I’ve trained as a workplace coach and invested in improving the ways I communicate with my work colleagues.

My current role is the first one that I’ve held as an openly autistic person and the team have been amazing. I’ve shared that I find socialising hard, that I struggle to recognise faces out of context, that I need to write everything down as my working memory isn’t great etc. To date I’ve always found ways to conceal these things. Revealing these felt exposing but with a supportive team around me it’s also enabled me to be a better CEO.

Have you made any other adjustments at work?

For some years I’ve been a home worker.  This allows me to work with a low sensory load.  I can keep the curtains drawn to minimise the light, work with blankets on my lap giving me the pressure I need to feel grounded, have the temperature up high to manage the sensitivities I have too cold, and more besides.  I didn’t realise how much stress it was putting on me to be working in an office with lots of different people and how draining it could be masking all day.

What would you like to see changed to make people more comfortable with being openly autistic at work?

First and foremost, for employers to recognise that most autistic people aren’t in work and there are very real barriers to accessing the workplace. Then for employers to be bolder and braver when making the workplace a more accessible space for all autistic people.  To effect change we need to try new things, to shape solutions with autistic people that work for them, rather than taking the status quo and seeing how that can be adapted.  We know from research that a diverse workplace, is a resilient workplace and there is a real value for employers in making their workplaces more accessible for neurodiverse people.

What advice would you give autistic people about being openly autistic at work?

I would love to say go for it and tell everyone. Unfortunately, we’re not quite there yet and discrimination is still a challenge for many autistic people. If this is something you are thinking about disclosing, I’d suggest starting with a trusted person within the organisation. To talk this through with them in confidence, exploring what your options might be.  To take your time and to go at a pace that feels right for you. If possible, to reach out and connect with other autistic people in your workplace, as their support can be invaluable.

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