If I had any doubts about being autistic, they have been dispelled by the book “Spectrum Women“, edited by Barb Cook and Dr Michelle Garnett. It was recommended to me by my gynecologist, of all people, who after chatting with me for 5 minutes said, “Have you ever considered you might be on the spectrum?” Hell, yes!
The book is a collection of first-person perspectives on living with autism by a number of women. The more I read, the more of myself I see in their stories. The difficulty in making friends, the sensory overload, the constant pretending to be something I’m not, even in the confines of my own home, the social awkwardness and perceived rudeness.
If you’re an autistic woman, suspect you may be autistic, or have an autistic daughter, I highly recommend this book to help you find yourself and, for parents, to gain further understanding into your children and advice on parenting them.
While I still don’t have an official diagnosis and don’t know when I’ll be able to afford one, this book has given me a new level of legitimacy with my self-diagnosis. I see so much of myself in these women and I’ve begun living with a new sense of awareness of what it means to be autistic.
I’m suddenly so much more aware of how much my internal and external environments affect me and realise that all the “extra” I feel is due to autism and that most people don’t feel things the way I do.
I am highly sensitive to all internal and external inputs. When I’m cold, I can’t concentrate on anything else other than how cold I am, the cold feels to me like needles piercing my body all over and the only thing I can do is focus on getting warm. My power bills this winter have been huge and I still have spent a lot of time in bed.
I can’t miss meals, because if I’m hungry then my whole body is consumed by the hunger and I need to eat. This often results in some poor food choices, because I grab the first thing I see, whether it’s cake or chocolate or a banana to satisfy that hunger, rather than taking time to make a healthy meal.
I hate having dirty hands, or an unwashed face, or waxy ears. I can’t function until I’ve dealt with the discomfort. I feel all these tiny things and it is overwhelming.
One thing I also realised is that while learning ACT to cope with my depression initially felt like a great relief, using the strategies is actually exhausting because I am constantly trying to watch and control my thoughts. More “extra” things to add to my constant feeling of overwhelm.
I have also learnt about autistic burnout, which happens to autistic people after they have spent extended periods of time (like my whole life) trying to mask their autistic behaviours and finally reach a point when they just can’t.
I certainly tick all the boxes for both symptoms and causes and it may be that I’ve been living in a state of autistic burnout for the last 5 years, rather than a depressive episode. Or maybe both.
It frustrates me that I can’t get access to a) a diagnosis and b)support. This is due to both finances and distance. The closest clinic that specialises in female autism is in East Malvern and they cost money (over $1,000 for an assessment). The psychologists that I’ve approached here in Ballarat either told me I didn’t need another label or downright refused to even contemplate that I have autism because I didn’t present as a young boy, which was the only example of autism they have worked with.
In the meantime, I am trying to be kinder to myself. Giving myself permission for ongoing time outs in bed where it’s quiet and warm, especially after sensory overload, like socialising or work. I’ve understood that I have been using alcohol to help me numb the sensory inputs, including the company and voices of my children, having to touch meat when I’m preparing meals, and the constant noise of the children in the childcare centre across the road. I’m drinking less simply because I’ve recognised why I do it and am able to use different strategies to calm my senses.
This has also got me thinking about all the women out there who have been labelled as “neurotic”, “hysterical” and “highly sensitive” – maybe we simply have undiagnosed autism?
It makes me laugh to see men’s dating profiles talking about how they like the simple things in life and are looking for an uncomplicated woman with no drama. Maybe they’re looking for a doll? As an autistic woman, I am anything but uncomplicated and my life is always full of drama because so many things cause me drama. Having spent a lifetime hiding how much drama life causes me, I am finally giving myself permission to acknowledge the pain that the simplest of things cause me and have started telling my children when I am finding things overwhelming. “I am having an autistic day”, I might say.
I still remember an incident from my childhood, which shows just how much structure and information I need to be able to function in daily life.
It was the beginning of Grade 1, which was the first year of school, back in Poland and this day we had a subject called “Practical-Technical Activities”. I had no idea what that was and my mother, despite trying very hard to explain things, wasn’t settling my nerves. I remember crying out to her from our 5th storey window as she was walking off to the tram stop, “What do I take to school today?”
Information about book lists and subjects in 1970s communist Poland wasn’t what it is today in Australia and on the day, I still didn’t know how to cope with this mysterious subject.
In the end, I took some scissors, colouring pencils and craft paper as my mother suggested and it was just right because this strangely named subject was just Art & Craft. However, I still remember the panic in my stomach that morning as I saw that my mother had left the house when I woke up and I needed to scream at her from a great distance about what to take to school.
Yes, that could have been “just” anxiety, but coupled with the difficulty I had getting on with other kids, making friends and figuring out all the strange playground rules, which everyone else just seemed to know, to me that’s such a clear sign of my autism. I really, really need to know how things work and what the rules are.
My son, on the other hand, is a different kind of Aspie – he likes making his own rules and breaking other people’s. He constantly questions the status quo and looks for arguments wherever he can. Things have to make sense in his head before he decides to do something. “Because I told you so” is not always an effective argument with him, but “because I let you live in my house”, is. Although he has been known to bring in the Universal Declaration of Human Rights into our “discussions”.
Some people have questioned my need for an official diagnosis, but I think it just shows that they’re neurotypical. I simply need to know.
A diagnosis would bring me peace of mind and validation that I’m not simply a bitch. I like to know the name of whatever it is that makes me different in the same way, that my diagnosis of depression made me feel relieved and like there was a way to cope with the thing I’d been dealing with on my own for so many years. It would also stop me from feeling like a fraud whenever I say or write anything about my presumed autistic experience.
For the moment, every day seems to bring a new level of awareness of how my brain is different to others. Yesterday I discovered that my ears start ringing after being around people and too much stimulus for more than an hour. I need solitude and silence to recover my equilibrium
It’s also been interesting to discover that autistic burnout can occur as a function of ageing because I had often wondered how I had coped for so many years in my 20s and 30s working full time and being around so much stimulus for so long each day. Yes, it’s true that I came home exhausted each day, hated work and had lots of migraines, but I still coped so much better than I do now with my limited working hours. Or maybe I am just more self-aware.
I’ve been toying with the idea of going back to work full time, in Melbourne, and I’m quite curious to see how my body and mind would cope with that. Would my self-awareness allow me to build in coping strategies into my day? Or would I run myself ragged like I had in the past?
Actually, I’m quite excited about the idea, because I’d love to get my brain working more, plus having enough money to actually pay for our cost of living would lift a substantial amount of stress from my mind, which can only be a good thing.
Are you autistic? Do you have an official diagnosis? How did having a diagnosis change how you felt about yourself? I’d love to hear your stories.