20 November 2018 – When Jolene Stockman got the autism diagnosis, it all made sense to her, finally.
DIAGNOSIS: AUTISTIC! Congratulations! Here’s a label, a t-shirt, a blueprint, and a special car park.
Welcome to the new world – the one where your quirks are high-fived, your other is same, and where your existence rewrites normal.
After an unprecedented shutdown (a shopping centre, school holidays; need I say more?) I got worried and found answers. Honestly? I was hoping for a tumour. A clot. A physical something that I (or ideally, a medical professional) could remove and be done with. An answer to the problem that was me. “Ahhh, yes – it was this the whole time: an extra doodad, a missing piece, a loose screw.”
And then the diagnosis came in: autistic.
When I was diagnosed as autistic the world shifted. My world, anyway. I was an adult, but suddenly so much made sense. I made sense. And as I worked through the shock, the denial, the confusion, and the mountains of myths, facts, and stats, I had a decision to make: do I tell?
There are plenty of reasons to keep it quiet: denial, fear, prejudice, judgement, rejection (and that was just in my own head!) Why rock the waka? I’ve made it this far; I’m a grown up (ish!), I’m married, I work, I have kids. I’ve pulled off normal my entire life, why tell now?
But this is who I am. Actually, it’s who I always was – I just didn’t know it. A lifetime lived as different, weird, alien, other. A certainty that I was weak and less-than. That I did not belong here. A conscious, constant knowing that shaded every decision, from cadence to career. And now
I know differently. This is who I am. I started to feel a deep responsibility to the little ones coming up behind me. If I self-identify, if I come out, I tell the world that being wired-up differently is okay, it’s maybe even amazing! And more than that; I tell myself.
Self-disclosure should be completely up to the individual; it should only matter what I want and how I feel. Reality is: there’s a lot at stake. The prejudice is real. The judgement. The looks. I have fought to avoid ‘the looks’ my whole life and now I invite them? But as I learned more and understood more, the reasons to tell became stronger. If I came out, I would:
- Acknowledge and accept that I had challenges rather than weaknesses
- Show my children that I am okay with myself, and so give them permission to feel the same
- Create more positivity for parents of newly diagnosed children
- Add my story to the mix. I would join the call for neurodiversity; one story at a time.
Self-identifying is not mandatory. The same way you don’t have to tell people your marital or family status, your favourite food, or your medical history. It’s a personal choice, it has to be. I don’t always tell people I’m left-handed, drink fizzy drink instead of alcohol, or am allergic to fruit. It is every person’s right to decide who they are and how much they tell.
Even the label itself is not straightforward. Am I autistic? Or do I have autism? Am I neurodivergent? Are others allistic? The use of language can come with hooks and layers, and the more you read, the deeper the attitudes and ideas can be. For me, it feels like ‘autistic’ is who I am – innate and integrated to everything about me. As true as my being left-handed and as matter-of-fact as my having freckles.
As a writer, and someone who is coming in to the autistic community late, it was (and is!) important to me to nail the language. The way we label and frame things is powerful – especially to people outside our community, and to our children.
Whenever we talk about autism, we describe what is possible and what we believe – and we spread that information. I was relieved and happy to find Te Reo Hāpai – the Language of Enrichment, a Māori language glossary for use in the New Zealand health sector, researched and written by Māori language expert (and -shout out- my cousin) Keri Opai. His work is uplifting, strength-based, and his Māori interpretation of autism means ‘in my / his / her own time and space,’
I feel that takiwātanga honours who and how I am as an autistic person. A word that encapsulates how I feel and the best way to be with me in a clear, concise, and empathetic way. Having takiwātanga as a conscious and connected way to describe autism is a gift. And distinctly New Zealand.
How Do You Tell?
Once I knew I wanted to tell, the how became important.
I didn’t want a million conversations. I don’t usually, but especially not about me. Or about this. Even my initial reaction to the diagnosis wasn’t completely positive at first. What I knew about autism then isn’t what I know now. Could I handle seeing that reaction on the faces of people I loved? People I respected?
People I met randomly on the street? And more than that, which would be worse? People screwing up their faces in disappointment? Or nodding as though it all makes perfect sense?
So, how do I do it? A coming-out party? My favourite social nightmare. A bulk email? A little impersonal, a little ordinary. I decided on a screenplay. That would keep me in my comfort zone, buy me some time to figure it all out myself, and provide the perfect way to package up the news in a user-friendly way. “Hey guys, I’m autistic. And it’s cool – check out the movie! Bye now, I’m off to live under my weighted blanket!” But before I could finish my script, a magical opportunity showed up to push me forward.
TEDx events are independently organised speaking events based on the global TED Talk style phenomenon.
When New Plymouth held its first TEDx in July suddenly here was exactly what I had wanted: an opportunity to package up my news in a succinct way, to use my writing and speaking skills, and to ‘come out’ in a way that was public, but kind of intensely private at the same time. Okay, but we’ve all seen TED Talks – and the best ones really go there.
I am a certain kind of brave (I’ve been known to go to the supermarket at Christmas time) but am I this kind of brave? Iti nei, iti nei – one step at a time. My interview with the TEDx organisers was the first, most vulnerable I had ever been out-loud in-public about my diagnosis. And to my surprise; it felt good. Scary good. Amazing. Whether they accepted me or not, I was determined to finish my screenplay and be okay with the new label for my regular self.
The day I was accepted for TEDx I was excited, terrified, honoured, and humbled. And those feelings only intensified as time went on. The day of the talk itself? Overwhelming. Huge. Magical. People laughed, they cried. They still write to me and tell me what it meant to them to hear themselves – or a loved one – on that red dot with me.
So, if you decide to come out, what do you get? Relief. A new perspective on your strengths and weaknesses. A sense of peace. Self-acceptance. Support and understanding.
When I was diagnosed, I read the statistics. That scared me. I read the information that saddened me. What resonated for me, were the stories. The successes. Actually autistic. The frontline. People who live in the world as I see it and who are figuring it out, too. A label doesn’t have to be a restriction, it can be an opportunity: to see what’s possible in spite of and because of the diagnosis, and there is so much strength in our community.
I’m not special. I’m not the first, the best, or the last of my kind. I’m a baby in the world of autism. There is so much to learn. I only have my story to offer, but our stories can be so much more powerful than the statistics. They have to be. I’m grateful to follow the voices of those ahead of me, and to put out a call for those who follow: We can be, do, or have anything.
Diagnosis: autistic! Congratulations – but actually… the label is up to you. The t-shirt is itchy. The blueprint is blurry. And there are no special benefits. What you will get, is freedom, opportunity, and a community of incredible people who get you. And that can make all the difference. Why rock the waka? Because you’re in it. We’re all in it. He waka eke noa, we’re all in this together.
Thank you for blazing the trail, for telling your stories, and for welcoming me into the A team. I am so happy to be here, and I will make you proud.
- Jolene Stockman (BBC, Distinguished Toastmaster) is an award-winning writer, speaker, and business owner who spoke about her adult autism diagnosis at the New Plymouth TEDx event in July 2018. Her presentation ‘How to be Normal (and why not to be)’ is on YouTube.
- This article appeared in the Altogether Autism Journal, Issue 3 2018.