‘On stage, being authentically me is the easiest thing ever’

How often do we use humour in our work? For us, working and living in the field of neurodivergence, humour is firmly on the professional agenda, a lesson learnt from the PDA community.

Pathological demand avoidance (PDA) has been widely debated, with clinicians and researchers continuing to disagree over whether it forms a profile within the autism spectrum, represents 'symptoms but not a syndrome', or overlaps with other diagnostic categories (Newson et al., 2003; Green et al., 2018). But as psychologists, we can perhaps be less constrained by diagnostic structures; holding the privilege to be bold and pragmatic, learning from listening to people and allowing our work to be informed by lived-experience evidence.

As The PDA society's new CEO, Ed, opened their recent comedy fundraiser in Hackney, her words were a plea for pragmatism. At their small charity they hear the same story over and over again; once, and if, children whose experience and behaviour fits this PDA profile eventually get diagnosed with autism, their parents are told to get stricter, boundaries to get tighter and 'autism strategies' to get more conventional. But parents are finding this does not work, and children's mental health 'falls off a cliff'.

So, what might we all do instead? The PDA Society's PANDA model is one place to start, combining emerging research and people's experience to suggest a range of strategies for this group. These include limiting demands, reducing anxiety, picking battles, and using negotiation and collaboration. Our clinical work in this field has taught us to push further, embedding these strategies in a wider approach which is relationship-focused, trauma-informed and co-regulating. Our key lesson learnt from PDA which we hope might inform all our fellow psychologists? Use humour. Invite playfulness. Remember fun.

With all this in mind, it could not have felt more appropriate for the PDA Society's fundraiser in November to be a comedy gig. Tucked away in a wonderfully restored art-deco cinema in Hackney, a host of comedians, including several who are neurodivergent themselves, united us as a room full of humans, in laughter. Our work gets heavy sometimes, so we want to help psychologists remember the power of laughter, a lesson PDAers remind us of every day.

One of the line-ups, Fern Brady, had us in stitches exploring neurotypical people's 'pathological urge to smooth things over' and why autism won't be Superman's latest superpower. You might recognise Fern from her podcast (Wheel of Misfortune), her appearances on TV including 8 out of 10 Cats and Live at the Appollo, her own touring show Autistic Bikini Queen or her recent memoir Strong Female Character. After the gig, we connected with Fern, to find out more about her journey in comedy and some of her reflections for psychologists. We were so thrilled to hear her set, meet her, and for her to share some wisdom with our readers.

Fern, thank you so much for talking to us. We were curious about your experience of being an autistic woman in comedy. How easy is it to be authentically yourself at work, both on stage and in TV work?

On stage, it's the easiest thing ever. TV, it really depends on the type of programme. There's a lot of people-pleasing in TV so for me I still have a very, very hard time asking for what I need. The biggest issue is when I tell someone I'm autistic, that word means a whole other thing to most people. I'm telling them I'm autistic to try and help, to explain that accommodating me will get the best work out of me, but all they'll hear is 'I'm difficult, I'm attention-seeking, I'm going to make things harder for you'.

I've not much optimism for progress amongst neurotypical people – I think change will happen amongst the autistic community first, so that's why I'm excited so many of us are constantly sharing information with each other online. 

How has your autistic identity developed since diagnosis and how has it felt to go through that process in the public eye?

Can't answer this one, as 'in the public eye' makes it sound like I'm famous rather than known a bit in comedy circles! In terms of in my industry, I made sure to only talk about autism with other autistic comedians because I knew the non-autistic ones would take the mick out of it or feel uncomfortable with it. I had a couple of comedians say really horrible things about it, and instead of trying to explain autism to them or correct them I took the rage and channelled it into my book. 

What can the industry do better to accommodate autistic creatives and make the space more inclusive and accessible?

If you mean the comedy industry, I think it's doing fine.

[It was wonderful to hear that despite the challenges, the comedy industry is providing a progressive community for neurodivergent artists. However, outside of the comedy industry, and stages where Fern is able to be herself, we heard about some of the challenges that neurodivergent adults continue to face.]

From your book, we understand that you were lucky enough to have post-diagnostic support – what was most helpful to you?

It's important to point out here that even as someone with money, time and resources I still had to really, really push and seek out post-diagnostic support – and even if you go private those services are so, so overstretched. I got the same as everyone else after my diagnosis – a couple of book recommendations, a list of accommodations to make at work, and then they send you on your way. That's really not enough. Now, whenever I meet newly diagnosed people, I tell them they have to really look after themselves and get post-diagnostic support in that first year or two after.

I'm still learning stuff I should have learned as a child – so for example I did a thing addressing my sensory needs, and that was really helpful. The first bits of post-diagnosis support I got weren't so much to do with asking for accommodations, it was more learning how to navigate non-autistic people – so for example I learned a few scripted lines on what to say if people were trying to hug me at work, or if I got sensory overload on a job I learned things to do that would balance that out. It's insane to me that all autistics aren't able to access this stuff, which is why I put it in my book. 

It is so sad but helpful to hear the things you wish you had learnt as a child. Do you have any advice for parents and people working with autistic children and teenagers?

If they have special interests, let them pursue them. I don't think the traditional school system was any good for me socially or educationally, but luckily I had a mum who encouraged me to spend as much time on my special interests as I wanted and battled the headmaster when they tried to force me to do subjects that I was zoning out in. 

Has your autism diagnosis created any barriers (e.g. to accessing healthcare)?

I'm very careful which doctors I disclose my autism to as most of them are dazzlingly ignorant on the topic and the links between stuff like hyper-mobility and autism. I take a very proactive approach to my own health now as I can't trust the NHS to do so. I also love that I can now afford private healthcare because it really changes the power dynamic between me and the doctor and means I'm more likely to get help rather than being fobbed off.

Thank you so much Fern for your time and wisdom. We have loved your book and would recommend it to everyone on their own journey with neurodivergence. Finally, we wondered if you have any recommendations of your own for books or podcasts for newly identified/diagnosed people, particularly neurodivergent girls and women?

Unmasking Autism by Devon Price, The Square Peg Podcast, Ten Steps to Nanette by Hannah Gadsby, Unbroken by Alexis Quinn, Girl Unmasked by Emily Katy, Thinking in Pictures by Temple Grandin and Aspergirls by Rudy Simone.

Sarah and Jennifer are part of the editorial team and have been learning, laughing and exploring PDA together for several years. 

Jennifer is an autistic/ADHD/PDA adult, running a support group for parents of neurodivergent children and working with the PDA Society to improve understanding. She is so grateful to Fern's book for helping her to understand her own relationship with food. 

Sarah has written and presented on the PDA profile for the British Psychological Society and carries her learning from PDAers with her in all her work.

References

Newson, E.L.M.K., Le Marechal, K. & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.
Green, J., Absoud, M., Grahame, V. et al. (2018). Pathological demand avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health, 2(6), 455-464.