Saturday, 18 August 2012

The Invisible Disability

I don't tell everyone that we meet that Lucy has autism. Many of her friends and their mum's at school are unaware. At the age of 7 (almost) we can get away with it. I tried to get away with it much longer with her older brother but things turned really bad when he was 12 years old I don't want to make the same mistake.
Lucy is verbal, intelligent and looks normal. Occasionally she will glaze over and become distant and it takes a while to get through to her but most people will take no notice. Sometimes she gets a little over excited and an a little flappy, not an unusual amount though and again, most people will take no notice. She is un-coordinated and clumsy, she has a strange gait when walking and running and sometimes performs strange actions. At 7 yrs this is starting to be a little more noticeable but we are still getting away with it.
Lucy talks out of turn, ignores people, repeats what you say, talks about what she wants to talk about and doesn't really interact, talks incessantly about the things that interest her, makes funny noises all of which you can get away with at 7.
When do we stop getting away with it? When does it become apparent that Lucy can't help these behaviours and is not just immature. Sadly, I don't think it will be much longer and we have to start thinking about how to deal with it, and make things easier for her.
Lucy's older brother didn't have any physical problems but Lucy also has Hypermobility Syndrome and weak core muscles. These contribute to the strange way she walks and talks but also affect simple climbing ability. This summer our visits to the park have involved Lucy's 5 yr old sister and 2 year old brother doing everything by themselves, while I have had to help Lucy with climbing things. One park in particular has a slide/climbing frame that you can only access by climbing up a ramp holding on to a rope. While the other children, big and small, were zooming up with ease, Lucy just couldn't manage it and I had to give her a shove. Then yesterday we were at an event with face painting and the children were sitting on high stools to have their faces done. Lucy could not climb on to the chair and the lady who was about to paint her seemed totally shocked. I helped her up and went back to help her down afterwards.
So, although Lucy may not have the traits of a severely autistic child, and doesn't look obviously disabled, she does draw attention to herself.
Do we carry on as though this is all normal? My son suffered terrible bullying and even now I worry if he goes out alone (which he doesn't do very often.) How am I going to make things different for Lucy?


  1. My L (9 tomorrow!) is Autistic, and also has physical disabilities (persistent femoral retroversion & tight hamstrings). While I hate to be like "Oh he's Autistic, yes he's Autistic, he can't help it he's Autistic" I have come to a point now where I think personally the best way to make people understand and accept it is just to be forthright and tell them, this is how it is.
    I think maybe some come across such poor attitudes about ASD & AS is because they don't understand and don't know. I will happily talk someone's ear off about it if it makes them think twice before passing judgement.
    It is hard though x

    1. You have a point, the more people know the less they can judge. My son was very difficult to control, especially in public and I found it all so hard, I hated people thinking he was just naughty, but couldn't bring myself to say anything about his autism. That was over 12 years ago and I feel differently now, so hopefully I will learn by my past mistakes.

  2. Good luck. Have you read the Boy Who Fell to Earth by Kathy Lette? You might like it. I have posted on it. Cheers

    1. No, I've not read it, I'll look it up, thanks :-)