Why should you talk to your daughter about her autism?
The simple answer is: because she may already know that she is different, and not naming it as autism isn’t going to stop her identifying it. She may well identify it in terms such as stupid, weird, incompetent, or other negative terms. And others around her may do the same. Giving her the vocabulary to talk about her differences may help her to understand and to advocate for herself.
My experience of growing up as an undiagnosed autistic girl
Growing up during the eighties and nineties was not a time when girls were typically identified as being autistic. I was ‘the quiet one’. I could get lost in a book so much that I would forget the world around me and not notice anything. I could daydream for hours and play imaginative games with my younger sister and our toys. I remember being told to have good manners, to behave in a certain way. I remember being convinced that I would be a ballerina, but being unable to come up with anything other than a learned routine. I had friends but was very much in my own world.
I don’t remember much about sensory issues apart from hating things going on my face. I did ballet shows with my ballet class until I left at age 10, and we would have to wear make-up, which I hated. I also found I was unable to cope much with putting my face in the water during swimming, and it is for this reason that I am still a very poor swimmer in spite of having tried to learn multiple times as an adult.
Often I would say things that I thought were funny, but which were either taken as offensive by others, or simply didn’t amuse them. In conversation I would often leap from topic to topic, in seemingly random ways which made perfect sense to me but had no real logical link to the other person. I would interrupt or talk over people in case I didn’t get a chance to say what I wanted to say by the time they had finished (something which I still struggle with). I loved to learn about things, and set myself little projects, like finding out all about the solar system and writing up all I could find in a project folder. I trusted everything everyone told me, as it didn’t occur to me that people could be manipulative and deliberately misleading, which led to me being labelled gullible and the beginnings of bullying behaviour by my peers. In my mind, why would you lie or manipulate someone? Why wouldn’t you be straightforward and tell the truth? To me it made no sense.
Coping with puberty and beyond
I feel that up until secondary age, my quirks were tolerated by my peers and indulged by the adults around me. But it was in senior school where the wheels came off.
I was the one who hadn’t grasped what changes to personal hygiene need to happen when puberty hits in all its sweaty glory. I was the child who hated to brush her teeth, and who didn’t understand how other people suddenly seemed to know all about make-up and how to make boys like you. I suddenly found that I was the subject of bullying, and had no idea how to handle the intense and overwhelming crushes that I developed on boys who were never interested in the slightest. I think that the subject of my desire (which changed from time to time) became a special interest, but one which I always admired from a distance as I had no idea how to deal with it. Academically, school was great, I did well in all my GCSEs. But socially it was a total disaster. By year 10 I was hit with depression so bad that I was regularly missing school because I couldn’t face getting out of bed. I felt unable to talk to my family and I did not believe that I had any friends by that point.
Interestingly, I believe that I was masking all the time by that point. I remember asking my mum to let me walk the 10-15 minutes journey home instead of giving me a lift so that I had time to process my day and get back to my more relaxed self by the time I got home. It would help to explain why, when glandular fever hit just before my GCSE exams, I was left exhausted for months – possibly as a result of weaker immunity due to stress, and possibly due to burnout. I left the school to go to a local sixth-form college, and things took a turn for the better, including new friends who helped me to feel better about myself.
University and adulthood (before I realised I am autistic)
Fast forward to university and the same old not understanding others reared its ugly head. The people I met in the first two weeks in halls decided rather unpleasantly to tell me not to hang around them unless I remained silent. There were a number of things which I won’t go into, but adjusting to university life was really difficult and I felt as if I had missed some vital piece of information that everyone had been given but me. That feeling persisted for years in most areas of my life.
Being a trusting person led me to being manipulated and eventually in adulthood to a relationship which was abusive in every way possible – emotional, sexual, financial, physical, you name it. I won’t go into details here, but I used to write a blog about my journey back to normality which you can read here. I am not trying to scare anyone, but it was partly as a result of not trusting my own judgement as I felt I wasn’t as good as other people, and partly the result of trusting someone who had spent a lot of time grooming me into submission. Had I known I was autistic at that time, perhaps things would have turned out differently. As it was, my ex was sent to prison and served a substantial custodial sentence for what he did, and I have moved on, found a lovely husband and we now have a fantastic daughter.
The route to realisation and self-acceptance
Realising I am autistic, not long before I met my husband 11 years ago, was like a light coming on in a darkened room. I had had my suspicions for many years that something was a bit different about me. I saw a documentary on BBC 2 many years ago called My Family and Autism, which I found interesting. There were also the beginnings of some suspicions in my family about various family members having autistic traits, which got me thinking. On meeting my husband, possibly during our first week together, we ended up telling each other that we thought we were autistic. It was a wonderful discovery and helped me considerably. I then ended up doing a lot of internet research and came across Autistic not Weird, which I still follow to this day. I have also amassed a huge number of books by autistic women which I have related to a lot.
I have come to realise that there are a number of things that I find difficult which are not because I am stupid, or inadequate or simply failing at life. It is because I am autistic. I cannot make important phone calls without writing an entire script for myself so that I don’t forget what I was calling for. I am unable to drive long distances because of the sensory input of noise, heat and vibration from the car, as well as the concentration to drive safely when nobody else on the road seems to be predictable or signalling adequately. I find supermarkets overwhelming and need to plan carefully so that I can conserve my energy. I need to give myself an hour each day before the afternoon school run to rest and get myself adequately mentally prepared to help my daughter with her homework and to give her the attention that she needs and deserves. I have to write everything down as my short-term memory is poor. I have mild face-blindness which makes meeting people really difficult. I could go on, but...
I have learned to be gentle with myself because I am not failing, I am not inadequate. I am autistic and I don’t need to beat myself up over having a brain that works a bit differently.
Laura Webb is a director of NeonDaisy