I am forty six years old and I have a ‘new’ diagnosis. I am Autistic.
I don’t ‘have’ Autism like you have a cold or have the flu. Autism is not an add on. It’s not something that suddenly happened to me. It’s part of who I am. As much as I identify as a woman with brown hair and blue eyes. It is me. I am Australian. I am not a person who is from Australia. You get the idea.
So why am I suddenly sharing that I am Autistic? I have found peace in understanding why some things are the way they are. Why I am how I am. Why I think how I think.
2018 is also the Year the United Nations will pass a resolution focusing on ‘Empowering Women and Girls with Autism.’ www.un.org/en/events/autismday/
I remember the first time I was consciously aware I was different, that my mind was different. That I thought differently. I was 5 years old. I was sitting on the hard, green, prickly carpet in my classroom. I can still smell the classroom and see the kids sitting around me. My teacher introduced our new topic, Animals. She asked if anyone could name an animal that produces milk. I put up my hand and answered her question. A bitch – A female dog. A female dog produces milk to feed her pups. We had dogs. Cindy had a litter of pups and she fed them milk. I didn’t give the teacher all the information of where my mind had taken me. I simply answered ‘a bitch’. She didn’t seem very happy with my response and told me it was a silly answer and people can’t drink dogs milk. She didn’t ask us to name an animal that produces milk for us to drink? In that moment, with all the kids laughing at me, I learned an important lesson. You have to work out what the teacher wants you to say even when you know more than she does. I also learned that making people laugh feels good. Having people laugh at you doesn’t. I never put my hand up again. I would answer questions when called upon but I never volunteered any information. I never let the teachers know what I had locked up inside my very busy mind.
In defence of my teacher I didn’t have the highest opinion of teachers. I had been to daycare when I was 3 year old. I remember it like it was yesterday. Daycare taught me that adults like to control kids. Kids are expected to behave in a certain way at different ages and that makes the teachers happy. I didn’t behave like a typical three year old. I asked questions. Lots of questions. Like, what is the point of threading macaroni on a piece of wool? If they had explained about fine motor control I would have happily accepted that it was a purposeful activity but they simply told me to do what I was told. I also didn’t see the point of sleeping after lunch. What was the point of us all rolling out thin, uncomfortable mattresses, putting our sheets on it then being told to be quiet for what seemed an eternity? It made no sense to me. The facts as I saw it – the kids were uncomfortable because of the thin mattresses so they moved and made noise and no one could sleep. It doesn’t work. The plan failed. Make a new plan. The daycare staff didn’t appreciate my advice that they needed some assistance with planning. I thought I was being helpful, giving them information they obviously weren’t aware of. Like when my teacher fainted. I’d been asked to face the opposite direction from the rest of the group for asking too many questions. I was the only one who saw her faint. I had to make an announcement. It was a safety issue. In hindsight, announcing to a group of children three years and younger that their teacher had ‘carked it’ and following up with an explanation of the definition of ‘carked it’ was always going to be problematic.
Reflecting on these memories of my childhood and realising that my memories are very detailed and precise, going back to before I was two, I see patterns. Patterns in my interactions, in my behaviour, in the world around me. Patterns, predictable behaviour like in the Big Bang Theory. I see some parts of me in Sheldon. I have my spot at the dining table and on the lounge. I don’t make a big deal out of it. My girls are Autistic, they have their spots. We all have our spots where we are comfortable, no big deal. Like Sheldon, I like to talk about things that interest me. Things I’m learning about. Things I’m mastering. I’ve learned that it’s expected behaviour to show that you are interested in your friends recent shopping trip to Melbourne. I ask the right questions. I smile in the right places. I know how to be ‘socially acceptable.’ I would much rather be discussing the latest journal article I’ve read but small talk is what’s makes my friends my friends. It’s how people connect. I get it. It’s tiring. But I do it. I’m expected to.
Sharing my diagnosis is still new to me but I’ve noticed a pattern already. One of two things usually happens. Firstly, there is usually a long pause then a well thought out comment follows. “We are all a little bit Autistic.” No. We are not ‘all a little bit Autistic’ or ‘on the spectrum somewhere.’ You are either Autistic or you’re not. End of story. You may observe similarities in yourself and the observable behaviours of an Autistic person but that makes you Autistic as much as nausea and an enlarged stomach makes you a little bit pregnant.
The second thing that often happens, reference is made about an Autistic person. Often ‘Sheldon’ from The Big Bang Theory but of late its the ‘Good Doctor’. The reference will go something along the lines of ‘But your not like Sheldon. You’re not Autistic. Are you sure you’re Autistic?’ In that moment I usually make a choice to educate not annihilate. ‘You can’t see my Autism like I can’t see your ignorance’ doesn’t really help the cause. So I talk about neurology and sensory processing and theory of mind. The thing is, people don’t know what they don’t know. The truth is I am like both Sheldon in some ways and the Good Doctor in others. The thought bubbles that appear above Dr Murphy when he is thinking is a great representation of ‘thinking in pictures.’ It shows the layers and connecting of information. It’s how my mind works. My memories also link strongly to my senses as depicted in the show. I not only remember the smell, I experience the smell while remembering.
So what’s the point of all this. Why write, blog, educate, harass Politicians, organise events. Again, two wonderful reasons. My daughters. When they are in their forties I hope for their stories to be different. I don’t want them to have to choose to make good memories from finding the good in challenging situations. I want them to have genuine, happy memories, like the amazing day they had at their sports carnival today where they participated in every event. Where the appropriate adjustments were made without fuss and without attention. The Education Assistant who noticed the nerves and talked through the situation with the group, not singling anyone out. The Tribes Agreements that give all the students the Right to Participate and the Right to Pass. The common language, the shared agreements around expected behaviour, great people making up an even greater team and no surprises. No surprises. Predictable routines equals a sense of safety. Make those visual, predictable routines and it’s like magic. Will my girls experience disappointment, sadness, heart ache? Of course they will. It’s part of the human experience. We all have negative experiences. My hope is that they only have to deal with their fair share and not the added layer that comes from ignorance and fear.
Autistic minds are not disordered …
‘ The dubious assumption that there’s such a thing as a “normal person” lies at the core of the pathology paradigm. The neurodiversity paradigm on the other hand, does not recognise “normal” as a valid concept when it comes to human diversity.” – Nick Walker
I believe this is what people mean when they say ‘we are all a little bit Autistic.’ What they really mean, is ‘What is normal anyway?’ A genuine attempt to connect with kindness. As my good friend Fiona says “Be kind or Be quiet.” I choose kind. I don’t do quiet.
2 Replies to “I am Autistic. Autism Awareness Month 2018 ~ ‘Empowering Women and Girls with Autism’. Seems like a good time to share my story.”
Hey Jonelle I loved your post and this beautiful window into your soul.
I wanted to share one of my memories of us as little girls sitting at your house playing barbies. I loved coming to your house because your stories made playing dolls so much more interesting and I was so jealous I couldn’t come up with the same stuff.
Now I see that same imagination and dedication coming through in your work with your girls. Please be sure to tell your girls that there is always someone seeing their special qualities but due to their youth they may not be able to express it.
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I also struggle with autism, the lack of education for autism is just sad.