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Jody O'Neill Autistic Women

International Women’s Day: Jody O’Neill on Autistic Women

Jody is an autistic writer, actor and advocate. Her acclaimed play, What I (Don’t) Know About Autism, will return in late 2021 for live and streamed performances. Having recently been diagnosed, she is particularly interested in autistic women. 

Happy International Women’s Day…Week…Year…

I am not good at what is typically seen to be ‘women’s’ stuff. I loathe going to the hairdressers. I can’t apply nail varnish. Going clothes shopping gives me a backache. I sweat more than the average bricklayer. I definitely don’t have enough handbags or shoes. I bypassed the gene for interior design. My make-up never looks flawless, and at 41, I still haven’t figured out how to blow-dry my hair straight. 

I’m terrible at making school gate conversation. I remember a few years ago, a Friday encounter with two other school mothers that went something like this:

Mum 1: Any plans for the weekend?

(Jody states plans, and then remembers to reciprocate.)

Jody: Do you have any plans for the weekend?

(Mum 1 looks delighted. Jody awards herself an invisible medal for social competence.)

Mum 1: Yes, I’m going away overnight with my friends.

Jody: Oh, lovely. Where are you going?

(Mum 1, inexplicably looking bored now, gives details of the hotel as Mum 3* approaches.) 

Mum 3 (to Mum 1): Well, are you all set? Have you decided what you’re going to wear?

Mum 1 lights up and the conversation frizzes – not in a bad-hair-day-way –  and sparkles with excitement until the kids come running out of the classroom. Meanwhile, Jody inwardly facepalms (having only recently learnt what facepalming is), and adds ‘Ask about clothes’ to the List of Possible Mum Chats in her mind.

*In this instance, I’m Mum 2, although my official given title by my son can be anything from El Chu to Venus to Scrapper

I can laugh about this now, but at the time, it really bothered me. It was early days with school, but I couldn’t figure out why the school gate interactions were making me feel like I was back in the corridors of my childhood. So, for me, this just felt like another big red FAIL to add to my list of social ineptitudes.

Obviously, not all autistic women are like this – I’m not bad at make up because I’m autistic – and I know plenty of glamourous, perfectly coiffed, autistic women who would wipe the floor with any allistic social butterfly.

But I suppose, at that time, I was looking at all the gaps in my understanding and experience as a series of failures, each one compounding the one before, as opposed to recognising that these recurring events were simply part of my own unique human condition. And that accepting these areas of challenge might also help me to start looking at my own personal strengths.

I have always learned from the outside in. I process everything, physically and intellectually, through writing stuff down and analysing it. For example, as a child, my special interest was ballet, but the issue was that I had no natural ability as a dancer. Rather than giving up, I developed my own method. So, when the teacher demonstrated new exercises, I would memorise the steps involved, knowing that I would make a mess of them on the first day, but then I would go home and write them down. Then I would stand in front of the mirror and copy the shapes I couldn’t instinctively make, and link the steps together, so that when next week’s class rolled around, I’d have the exercise down. It was very successful, to an extent. I started getting better marks in my ballet exams. But it was also very tiring. And the downfall was that there would always be a new exercise…and another…and another…so, I could never feel entirely secure and confident.

 

And that’s how navigating the social world has been for me too. I’ll observe closely, take mental notes, but there will always be the unexpected; the interaction I haven’t fully prepared for. So, I can look at that as a failure, or I can see the skill it has allowed me to develop. The fact that I can examine situations from multiple perspectives, deeply and analytically. I have a super-sense for who might be feeling uncomfortable in a situation and where that discomfort might stem from. I’d go so far as to call this empathy. I have become an excellent problem solver and giver of advice.

These are all things I can see now that I finally know that I am autistic.

I’m currently researching and developing a new play that looks specifically at female autism. In between all the havoc and disruption that Covid-19 has wreaked over the past year, I have been reading and watching and digging and searching and connecting. I have spoken with women who have self-diagnosed and those who have been through a formal diagnostic process. Those who were diagnosed in childhood and a majority who came to their diagnosis a little later.

Almost everyone whose work I have read, who I have spoken to has attested to their discovery of being autistic being a pivotal, positive moment in their lives. So, why is there still a stigma about ‘the label’? Why, when I sought a diagnosis, did the psychiatrist ask, “But why would you want this? You seem to be getting on fine?”

In my research, and in general, I have tended to surround myself with people who think positively about neurodiversity – who recognise its assets – but sometimes something will creep up and catch me unawares, and I’ll realise why the psychiatrist thought it important to ask the question.

Something will creep up like this. It’s Friday evening, and I’ve realised my Masterclass subscription is going to run out soon, so I’m trying to finish watching some classes before it does. I’m watching acclaimed writer, Aaron Sorkin’s workshops with aspiring screenwriters. You know, Aaron Sorkin of West Wing, The Social Network, Steve Jobs, etc. And he begins to talk about representation of disability onscreen, and I think… ‘Well, this could be interesting.’ And then he starts to talk about Rain Man, and the alarm bells go off in my mind.

Referring to the first draft of the script, he says that one of the final scenes had the autistic character, Raymond and his brother – and I quote –  “hugging each other and saying ‘I love you’ when the reality is that an autistic person is not capable of that. They are not capable of doing what we want a character to do by the end of the movie, which is to have changed. And so…it was a satisfying movie moment, but it was just a big fat lie.”

And there you have it – a straight, white, purportedly neurotypical man, in a position of authority tells autistic people what they can and can’t do, what they are and are not capable of. And as my heart sank and my rage rose (and I submitted a complaint to Masterclass that I still await a full response to at the time of writing this post), I realised that this is why the stigma still exists. Because of non-autistic, non-disabled people deciding what is and isn’t possible for people whose lives they have no experience of living.

But still, I feel hopeful. I feel like a growing force is calling time. Being asked to write this post has given me pause to reflect on the extraordinary women (and men) I have met and the warmth I have experienced since finding my way into the autistic community.  The autistic women I have met are intelligent, loving, supportive, questioning, funny, empathetic.  All probably things Aaron Sorkin would say autistic people can’t be, but there you have it, Aaron. 

I feel like, together, through our persistent questioning and challenging, attitudes are starting to shift. Autistic women are discovering their voices and their identities and through that we are finding the collective power to articulate our experiences to the wider world. I hope that in the next ten or twenty years, some smart (autistic) psychologist or psychiatrist will write a set of diagnostic criteria specifically for females, so that we don’t have to squeeze our autism through a male lens anymore. So that less of us are missed in childhood. So that, in ten or twenty years when a 38-year-old woman seeks an autism diagnosis, the clinician won’t ask, “Why?”. They will say, “Welcome.”

by - 19 March, 2021

Last updated by - March 19, 2021

in Arts and Culture, Autism and Women, Diagnosis, Family Life, Parenting

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