‘What I (Don’t) Know About Autism’ – Interview with Jody O’Neill

Photo credit: Ros Kavanagh

  Interview by Maura Campbell, Spectrum Women Features Writer.

When writer and actor Jody O’Neill reached out to Spectrum Women about ‘What I (Don’t) Know About Autism’, I couldn’t resist getting in touch with her to find out more about the woman behind this groundbreaking Irish theatre production (soon to be available on demand).

Performed by a cast of autistic and non-autistic actors and inspired by Jody’s own experiences, the play takes the audience on a journey that celebrates autistic identity and offers deeper insights to those less familiar with autism, smashing some tired old myths along the way.

Photo credit: Ros Kavanagh

  What led to you being professionally identified as autistic?

I received my diagnosis in June of 2019, but I had already realised I was autistic a year or so before that. I know not everyone seeks a professional diagnosis, but personally I think I needed the official ‘seal of approval’. I needed the formality. It was also really important to my son, who had been diagnosed three years before that. His diagnosis was what led to my own realisation. We are really similar and in fact, I initially put off seeking a diagnosis for him because he was ‘just like me’ and so if I wasn’t autistic, how could he be? Then, when we began to learn more about autism and the autistic community, I realised there was a reason why I was the way I was – why certain things in my life had come so easily while others were a struggle. It all started falling into place.

  And what difference did getting that diagnosis make to you?

It’s made more of a difference than I’d anticipated. I’m able to recognise patterns of behaviour in myself now that weren’t clear to me at all before, both personally and professionally. And crucially, identifying them means I can request or put into place necessary accommodations. For example, shortly after I received my diagnosis, I was shortlisted for a playwriting prize in the UK. I would have to travel there for the awards ceremony, meet the other writers, attend social functions, etc. The prospect of this would previously have filled me with dread, but now I was able to acknowledge that there was a reason for this, and instead of just suffering through it or backing out of going, I travelled with a companion, which made all the difference.

I plan better too these days – so, if I have a public speaking event or something, I’ll made sure I carve out a quiet day or two afterwards to buffer the inevitable energy drain. Overall, it’s made me a lot less apologetic for who I am, and more self-aware, in a positive way. 

  As a creative, how does being autistic influence your work?

This is a really interesting question. In a sense, I think being autistic is what led me to being creative in the first place. As a child, this was in a very specific way – my special interest was ballet, and I think the rules and confines of this classical art form gave me a safe place in which to exist in an otherwise chaotic world.

As an actor, it was similar – you show up; the script tells you what to say; the director tells you how to say it, and what to do with your body; and the stage manager organises your time – it’s a pretty safe and controlled environment.

As I got older, and began to write, I found a way to express how I view the world. I think being autistic allows a very unique perspective of being both inside and outside of the socio-political experience simultaneously, and I try to find ways of expressing this viewpoint in a way that makes it engaging and relatable for audiences.

  What is one piece of piece you wish you’d been given when you were told your son was autistic?

Don’t sweat the small stuff.

We were also given a bunch of advice that I wish we hadn’t been given. You’re so vulnerable in that moment, as relatively new parents, finding out that your child’s development pathways aren’t going to be typical. You just want to do it ‘right’, and so you’re desperate for expert advice. But the right thing to do is listen to your child and what they’re communicating, because they’re the chief navigator and expert on their own experience. They will lead you if you let them. 

Photo credit: Ros Kavanagh

  How do you feel about how autism is portrayed in the media and what would you most like to change?

Around the time I was thinking about telling my son that he was autistic, I opened the weekend paper and there was this glaring headline, ‘Nobody wants their child to be diagnosed with autism’. It made me so angry. My son could already read, and if I told him he was autistic and he happened to read this headline, how would that make him feel? What would it do to his sense of being loved and valued for who he is? I think the perpetuation through the media of autism as a tragedy does so much damage to the autistic community –  children and adults.

The other thing that bothers me is that most of the time, the story of autism in the media is not being told from an autistic perspective. We hear from parents, teachers, clinicians but their experience is an external one. We need to see more in the media about autism from the perspective of those with lived experience. That’s how we’ll change hearts and minds and start to build a better world.

  How did ‘What I (Don’t) Know About Autism’ come about and what are you trying to achieve through this production?

So, I was working in soap opera as a writer around the time my son was diagnosed. I’d kind of left theatre behind as I found it a challenging gig to balance as a parent. But our experiences in the early days of our son’s diagnosis lit a flame in me. We were let down by public health systems; trying to navigate a flawed education system; hearing people talk over our son’s head; dealing with conflicting advice. And when we began to discover the autistic community and the message of neurodiversity, I wanted to be able to share that with more people in the hopes of instigating social and political change.

And so, I wrote What I (Don’t) Know About Autism with two aims:

to promote autism acceptance and to celebrate autistic identity.

The play consists of 26 scenes that explore different aspects of autism. It’s presented as a relaxed performance to make it more accessible, and it’s performed by a cast of four autistic and two non-autistic actors.

  What do you most want people to take away from the show?

I want autistic people to feel like they’ve been to a party that was designed for them: to feel represented and to feel like part of the community of the production. I want non-autistic people to leave with a different perspective, a curiosity to find out more, with the understanding that one autistic person is one autistic person, and that it’s okay to ask questions rather than make assumptions.

  What feedback have you been getting from your previous shows?

The feedback about the show has been fantastic. It has been received so warmly by the autistic community and the wider disability community. Parents have told us they will treat their children differently as a result of seeing the show – not stopping their child from stimming anymore, for example. Teachers said they learned more in 80 minutes in the theatre than they had gotten from years of autism training. And amazingly, some people have written to us to let us know that they sought diagnoses themselves after seeing the show, and that their lives have changed for the better as a result.

  How can people see it?

People can see the show in person at The Abbey Theatre from the 26th of October to the 6th of November.

We are live-streaming it on the 3rd of November for audiences outside Dublin and internationally.

And then the show will be available digitally, on demand from the 8th to the 20th of November.


See: https://www.abbeytheatre.ie/whats-on/what-i-dont-know-about-autism/

Or www.aboutautism.ie


Photo credit: Ros Kavanagh