The image which accompanies this post is of my mum and I on Tuesday night at the Australian Capital Territory Woman of the Year awards. I was a finalist due to all those positive things I do as part of the Autistic community these days. I think this image is my all-time favourite family photo. It is spontaneous and, despite my difficulties reading facial expressions, I can tell it shows a mum and daughter who love each other very much. And we do. A photo is a snapshot of time – a moment frozen for eternity. My studies in Fine Art in a distant lifetime focussed on this potentially morbid aspect to photography so it is something I often reflect on in the age of selfies and people capturing seemingly every vaguely significant moment of their lives.
The photo of my mum and I is telling as it is a moment of time at one end of a difficult road. Twenty years ago there would not be such a photo, and not thirty years ago either. Even the photos of my mum holding a little baby me show a young woman looking excited at the prospect of the life of the little daughter in her arms and me showing a scowl beyond my years. Almost as if my little self impossibly had access to some inkling of the trouble she would know in life.
These days I am an overachieving role model, an example of the kinds of things parents might like their Autistic kids to accomplish as adults. My mum was delighted to share the awards night with me on Tuesday but her parental pride has a more difficult origin, for my teen years and twenties were hell for all my family. I made poor choices over and over, I was incredibly self-destructive. At times I lost contact with my parents for months and they thought I might have died. Even as a young teenager I was quite broken and family life was less than pleasant. For a while in my teen years my Autistic passionate interest was nuclear war, followed closely afterwards by communism – no ‘My Little Pony’ or passionate internist in art for me! I was quite a brilliant but very unhappy person.
I gained my autism diagnoses as an adult. This meant that I went right through school with no diagnosis. I was unaware I had an Autistic peer group and I felt very alone. But I’m not talking so much about me in this post – just setting the scene via my difficult experiences and pain. This post is about my mum and, through her example, some of the experiences shared by many Autistic parents.
My mum gained her Autism diagnosis just a few years ago as an older adult. Autistic parents up until very recently have been an almost invisible group. In my own advocacy career, when most professionals used to mention ‘parents,’ the assumption was that those parents were non-autistic and their kids were Autistic. In recent years I have met a large number of parents – and particularly mums – who have sought an Autism assessment for themselves after their child or children were diagnosed. They have seen themselves and their own childhood in relation to their own children’s Autistic experience and have wondered if they too belong within that group which their children also inhabit.
When I was about five I went to a therapist because I was aggressive at school. As I remember it I struggled with change and the unpredictability of the other kids and responded by hitting out as I didn’t know what else to do. As I understand it (which may be wrong – I was five after all!), the therapist suggested to my mum that maybe I was some sort of atypical autistic person. I don’t think that this was investigated any further. I don’t quite know the reasoning but having read about attitudes around Autism in the 1970s, the prevailing view from clinicians was that Autism was caused by cold-hearted ‘refrigerator mothers’. I can only imagine my mum wanted to steer clear of that! I feel that we were quirky family but a largely happy one when I was little, but my parents’ unconventional parenting was viewed dimly by those judgemental types who think it’s OK to give unhelpful and unsolicited advice to people.
But there was not much reason to judge my parents. They did some things well, others not so well and did the best they could – like a great many other parents. When I was a troubled teenager I remember talking to my mum almost every day while she was ironing. (My mum loves ironing things – or at least she does it a lot. I assume she enjoys it). No topic was barred. I could say or ask anything of my mum and she would respond with a loving, respectful, truthful answer. She was there for me even into the darkest places, when I was a prisoner both in the physical and emotional sense. She never let go of me and she never stopped loving me, even when it must have been very difficult. Her love has always been this tangible thing, like another character in our shared story.
As I have changed my life over the past 17 years and gone from desperate to fulfilled, she has been there. When I was unwell with significant mental illness between 2010 and 2013 she came and saved me and made sure I got care when I needed it.
In conventional terms my mum is odd. We had no Santa Claus, Easter Bunny or Tooth Fairy at our house but we had a fierce and strong love. My mum did a lot of things which people might think are odd – we used the same piece of glad wrap on our lunches all week because of my mum’s respect for the environment and if I was sad as a kid she would read to me from the Book of Revelation in the Bible – but she was just the best mum ever and we were quirky and different together and we still are.
I attended a conference a while back and a very young, fresh-faced PhD student presented her findings on Autistic parenting. She concluded that Autistic parents of Autistic kids are often absolutely amazing parents because they understand their child better than most and can advocate for them from a position of knowledge and understanding. I stood up and made a comment at the end of the talk. I said I have an Autistic mum and she is the best parent I could ever hope for. That my mum and I share a unique and amazing bond. Everyone clapped and I just mentally sent all that applause to my mum.
Some Autistic women’s self-advocacy organisations which are doing great work include:
Yellow Ladybugs – http://yellowladybugs.com.au
The Sisterhood Society – http://www.thesisterhoodsocietyaustralia.com