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Jody O'Neill: 'I want to celebrate our autism - not change it'

Writer and actor Jody O'Neill discovered she was autistic as an adult, following the diagnosis of her young son. She writes about their journey and how it drives her art

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Jody O'Neill's new play is written for a cast of both autistic and allistic (non autistic) performers

Jody O'Neill's new play is written for a cast of both autistic and allistic (non autistic) performers

The cast of Jody's new play

The cast of Jody's new play

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Jody O'Neill's new play is written for a cast of both autistic and allistic (non autistic) performers

I've worked as an actor and writer for almost 20 years now. In the past two years, I've been researching and developing work that promotes autism acceptance. The resulting play, What I (Don't) Know About Autism, premiered at the weekend, in co-production with the Abbey Theatre and in partnership with The Everyman and Mermaid County Wicklow Arts Centre.

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When did autism become part of our lives? I suppose, you could start in 2016 when my partner and I sat with a psychologist who told us that our child met many of the criteria of being on the autism spectrum.

How did we feel? Mostly relieved. At that stage, in our naïveté, we felt that now we were in the safe hands of professionals who could open the door to the services that would help our son to overcome the anxieties that were getting in his way.

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The cast of Jody's new play

The cast of Jody's new play

And more than that, relieved because he was still the same child. Now, we had a concrete explanation for why some things had been difficult for him. We had clear advice and pathways to access support. Nothing else had changed.

So, you could start in 2016, or you could go back a little further.

You could say it all started in 2015 when we realised our son wasn't navigating social situations in the way we had expected him to.

Or even further...Christmas 2014, we went with friends to see the switching on of the lights on Grafton Street. The overcrowded, bustling event culminated in a huge bang and an explosion of confetti all over the street at the exact moment the lights switched on. My son couldn't get out of there quick enough. For the rest of that Christmas, he struggled to be in the same room as a Christmas tree, which made family events a little awkward. Only nine months later was he able to explain to me that every time he was in the vicinity of twinkling festive lights, he was sure they could explode at any moment.

Can you imagine the terror and confusion? Everyone laughing and celebrating, seemingly unaware of the imminent danger only he could see.

You could rewind further to a two-year old who thinks round objects exist primarily for the purposes of arranging them into solar systems.

You could look at two solid years of wakeful nights. A baby that must have been tired, but just couldn't stay asleep.

Or you could start right at the beginning when at three days old, our baby was rushed to hospital in an ambulance after choking during a feed. At the time, looking at my helpless baby turning red, looking at him looking to me for help, all I could think about was saving him. Now I can see that his motor skills, even at that early point, were atypical. His swallowing reflex at birth hadn't fully developed.

So, you could say that autism arrived in our lives in 2012. Or you could continue with this journey back in time.

To a 17-year-old who's leaving home, heading off to college, weighing just five stone because she's taken a year off from eating. Recent research suggests that one in five females presenting with anorexia may also be autistic.

To a 16-year-old who discovers that alcohol is what's been missing all these years, and holds the key to social skills.

To a teenager, so afraid of stepping out of line, she copies everything her best friend does, right down to changing her accent in order to fit in.

To a nine-year-old who wants to become a communist and defect to Russia to join the Kirov Ballet.

A small girl on a tour of Fota House, who exists in utter terror having been told by the tour guide that, due to the size of the group, they are going to "split you all in half".

A pre-schooler with a fear of water so bad she won't leave the house in the rain without a hat on her head - or in a pinch (as discovered by an aunt who was in a rush to get to the supermarket) a pair of knickers.

A toddler who weeps solidly every time her mother leaves the room.

Another baby who just doesn't feel the need for sleep.

And of course, you could keep going back. Once you know the right signs to look for, the presence of autism is clearly identifiable right back through the generations.

But let's look forward again. To that afternoon in 2016, in a private clinic - private because we had been advised that we'd be waiting three years or more for our son to be seen through public services. All this talk of the importance of early intervention and we could expect our son to be at least seven before he reached the top of the waiting list.

To 2017, 2018... years passing and still no sign of any supports or assistance through the Public Health Service.

To a torrentially rainy evening in June 2019, when I'm sitting in a waiting room on Pembroke Road. Soon, I will see the psychiatrist who will officially confirm what I already know. That I too am autistic.

I should have realised this a long time ago, but it's taken me 39 years to get there. When our son was a baby, a toddler, a pre-schooler I put his differences down to the fact that he was, in many ways, just like me. His differences were things I could remember, could fully empathise with, although he was a lot more vocal than I was about expressing his discomforts. So, when the idea that he might be autistic first arose, I dismissed it. He was simply my son, and I wasn't autistic, was I?

And then, after his diagnosis, something fortuitous happened. We went through the various therapies suggested, attended various practitioners, completed training courses and realised that they weren't helping.

Looking for answers, we found our way into the autism community. We stumbled across Amythest Schaber's series of videos, Ask an Autistic and from there to a huge volume of digital content and literature by autistic people voicing their personal experiences. We found our way to a support group, Triple A and from there to AsIAm. The more I learned, the more I realised: autistic people are the people we need to be listening to, and their articulation of autism resonates beyond my son's experiences to my own.

Looking back, would I change anything?

Absolutely.

I would un-read every book and article on parenting that I ever read.

I would un-go to the toddler groups, play dates and social groups that caused nothing but upset.

I would un-Google everything I looked up in the time before seeking a diagnosis.

I would never compare my child to another child. I would take back the brief period of time we invested trying to teach our son to make eye contact, as if that was the key to a successful life.

I would listen to my wise friend, who told me several years before I accepted it, "He's just a non-conformer, isn't he?"

And I would take back any efforts I made to make him conform.

I would play more, laugh more and worry less.

And the list will keep growing. Because that's parenting, isn't it? A big messy cluster of fear, hope, anger, guilt and more love than you'd ever have imagined feeling.

What would I not change?

Our autism.

Even on the more difficult days, even in the midst of fears for the future, I would never want to take away the fact that we are autistic.

I will continue, every day, to accept my son as he is. I will seek out the therapies that support him, and I will reject those that try to change him or make him more typical. I will support his growing independence by encouraging him to develop the areas of his (many) special interests. I will teach him to advocate for himself and his needs. I will advocate on his behalf whenever he needs me to.

I will listen. I will try. Sometimes, I will succeed. Sometimes, I will fail. When I fail, I will try again.

I've written What I (Don't) Know About Autism for two reasons.

One: to promote autism acceptance - the idea that we don't need to fix autistic people, we need to adapt the world to better accommodate all its citizens.

And two: to celebrate autistic identity, because I think that's something worth celebrating.

What I (Don't) Know About Autism is at the Peacock Theatre, Dublin until Feb 8; The Everyman Cork Feb 11-13 and The Mermaid, Wicklow on Feb 15. www.aboutautism.ie

Irish Independent