It’s a relief to know why I’m different — I’m autistic!
I was always a strange child, I know that not just because I felt different (and still do!) but because everyone has always told me I was strange, difficult, odd. My family still remind me of this from time to time, even today.
I was a premature baby, tiny with no eyebrows, eyelashes and kept in hospital for 3 weeks in an incubator. I didn’t walk until I was over 2, I could shuffle everywhere but couldn’t walk. I still struggle with balance and constantly walk into things or I’m full of bruises as I bang into doors, desks etc. But I could talk, oh boy could I talk, at around 11 months apparently I could hold a conversation with my family, but put me in front of a stranger and I wouldn’t say a word. If a stranger looked at me as a baby I would just scream at them and couldn’t be consoled.
At playgroup, I would scream if my Mum left, I thought she was disappearing for good and I always played on my own with the tractors and going down the slide etc while everyone else immersed themselves in clay and paints etc. Oh the thought of putting my hands in clay, uggggh! I struggle to make pastry even today. I wouldn’t walk on sand, walk in the sea and everyone thought I had a hearing problem as I constantly used to say ‘pardon’ to everyone. I can’t differentiate sounds in noisy places but I think it was also an early ploy to give myself a second bite at the cherry to understand what someone was saying to me. Even as I grew older, I still couldn’t play with other children — I continued to love slides but my Dad always had to go down them with me as there was no way I would go on my own.
Of course, then there was the eating. As a baby I wouldn’t drink milk, so I didn’t gain weight and then I was such a picky eater as I got a bit older. And the sleeping, as a baby I didn’t need sleep and as a child I would read and read under the covers by torchlight because I couldn’t get enough of my books and as soon as I stopped reading my brain would just go into overdrive, it didn’t want to go to sleep. It doesn’t today, I can still read and read, but fortunately I have discovered mindfulness, in particular MBCT and that helps me take my brain offline for a little while to give my body the rest it needs.
I didn’t want to play with toys, I just wanted to take them apart to understand how they worked, every minute last detail and I would sit for hours on end doing just that, shutting everyone out as I immersed myself in my wonderfully complicated world.
I hated frilly clothes, anything fussy but I loved patent shoes, black shiny shoes (I still do!), anything with reflections. In Art I always wanted to draw metallic objects as I could lose myself in the reflections and today I photograph rain droplet and buildings with lots of glass and detailed reflections, in fact I always see the reflections before I notice the building.
I was seen at the local hospital, because of being premature. I screamed at anyone in white coats which was a little unfortunate and of course I wouldn’t answer any of the doctor’s questions, so I just listened as he asked my Mum “Does she do X and can she do Y” whilst testing my reflexes with a mini hammer and measuring my head etc. Of course as soon as we got out I would ask my Mum “Why did he do this and why did he do that? Why? What for? Why?” — all the way home! No wonder my Mum used to get exasperated with me!
It took years, before I would let the dentist look in my mouth. Every appointment I would go with my Mum and sit with my hand across my mouth as the dentist would say reassuringly to my Mum “Don’t worry we will try again next time!”
Hyperactivity was mentioned because I never stopped, I was always on the go and I never slowed down, but nothing concrete was diagnosed. When I was 7, I had a new doctor as my old one retired. He told my Mum “There’s nothing wrong with her, she’s just a clever little girl” Of course it was the early 70’s, no one had heard of autism and even later when it was heard of, little girls, especially those with high IQ’s of 150+ didn’t have autism. So that was it, I was discharged and I was on my own.
Until 2 years ago, I discovered autism, through a paper Temple Grandin had written and I watched her on a TED talk. I went OMG she’s describing my brain, the visual and pattern thinking and the Google search engine in the brain. I went on a voyage of self discovery, reading books and writing my own (very complex and long!) paper on the different theories and why I believed I was autistic. I even drew diagrams of how my brain was working differently from an NT brain and last year I took them with me to a self referral assessment with Sarah Hendrickx, an autism consultant and renowned author on autism including on Women and Girls, who agreed with me and gave me a written report to support it .
It was 40 years later, I was 47 and I found myself!
Over those 40 years I have had some tough times, I am a constant worrier and can suffer huge bouts of anxiety but I have learned many things and adaptations along the way. I have learned to wear a different ‘jacket’ for varying professional and social situations. I analyse people to understand them because I can’t rely on instinct and I spend hours on end, many in the dead of night trying to understand the people in my life even though I’m sure they don’t really realise this.
On the whole I am tending to feel in more control of my sensory experiences, but I can’t multi task or parallel process multiple sensory stimulation. This means I struggle to notice body language when I’m listening to a conversation or if I there is too much visual stimulation including eye contact, I can miss hearing what someone says and have to ask them to repeat themselves. Walking or any form of motor movement and doing almost anything else presents the greatest challenges. I’m also very on/off, too much/ too little which can play havoc with relationships and communication.
I have a small number of friends, although I’m not the easiest person to be friends with and I do find this painful and I have managed to lose too many, more than I would have liked along the way. I wish this was something I had a magic solution for. I still also really don’t understand that strange breed ‘the school mum’ but I’ve found a few friends in different walks of life along the way who are prepared to put up with my monologues on random subjects and constant searching for answers and my inconsistent communication style, although I am completely perplexed as to know why (and of course I want to know the answer!)
I have spent the last 2 years being completely self obsessed as I have tried to understand myself. I am now making peace with myself, because the more I understand and the more I can relate to, the more of a feeling of control I have.
I have spent years trying to fit in and be ‘normal’ but I am starting to understand how much that erodes self worth and I need people in my life to be there because they want to be there, based on who I really am, so I can leave the ‘jacket’ at the door. That’s when I’m at my most comfortable.
I believe the key for all of us on the autistic spectrum is understanding, firstly understanding ourselves (and we may need professional help in order to do that) and understanding from our friends, family and colleagues about how we communicate and how our experiences differ. Awareness alone is not enough, because everyone tends to use either their own point of reference or social imagination to work out the other person’s intentions. If you don’t understand how another person’s experience differs, you can’t understand their intentions through their behaviour and that is how miscommunication/ misunderstandings occur. Learning to walk in someone else’s shoes is as important from the non autistic person as it is for the autistic person and I would love people to know that just because they hold a belief about the intention of a particular behaviour does not make it fact.
Being open and asking what is happening at that moment for the person would be a much better strategy, autistic or not. I have also started handing out information, especially Tania Marshall’s new book “I am Aspienwoman” which I keep by my bedside to remind myself I am not alone.
I’m not really a writer, I prefer numbers and patterns and I’m almost as verbose writing as I am in speech, but I know I have so much to say on this subject and share with people so I’ve started this blog. I thought I would just jot down a few topics to get me started and it came to 42 ideas!
This is my first attempt, hopefully of many…..