As I am donating to the National Autistic Society (www.autism.org.uk) I felt that it was obligatory to write a post about autism. As some of you may be aware, my youngest sister has autism, so this is obviously a subject close to the hearts of me and my family. Living with autism not only impacts the individual, but the whole family as we aim to assist them with coping with life’s difficulties. Here I must acknowledge the superhero efforts of both my parents in looking after all of us and for always fighting my sister’s corner. It is amazing how difficult it can be to convince people that your child has autism. I am sorry to broadcast, but very recently a teaching assistant told my sister she does not have autism despite the diagnosis from medical professionals. Not only is this incredibly inappropriate, but it shows the challenge that autistic individuals have to face, when someone who is trained to work with special needs individuals has such a terrible attitude. Anyway, I am getting sidetracked here… I should provide some facts about autism (which can be found on http://www.autism.org.uk).
Around 1/100 people in the UK have autism and as it is not a physical impairment, it is not immediately apparent that someone is on the autistic spectrum. I have considered getting my sister a giant badge with ‘I’M AUTISTIC, WHAT’S YOUR EXCUSE??’ as people can mistake elements of her behaviour for being rude or they think she is younger than she is and naughty. Everyone with autism is different as it is a spectrum condition, so individuals with autism are affected in many different ways, but I think that many find the world a place that they struggle to make sense of and this can cause anxiety and distress. The 3 main areas which are shared are difficulties with social communication, interactions with others and difficulties with social imagination.
One key issue with communication is that people with autism often find it difficult to interpret body language, facial expressions, jokes, sarcasm and will often take language literally. My sister is great at copying other people for facial expressions, if my Mum smiles, she smiles, but often she is just doing this to try and fit in rather than understanding what is going on. Sometimes there can be a complete lack of empathy… for example when my Grandad died, my sister’s response was ‘oh well, at least we don’t have to buy him a Christmas present’. What else can you do in that scenario but laugh? I am actually giggling to myself right now. As for interacting socially, my sister definitely can find it a struggle, but she seems quite happy in her own company. Right now, her favourite thing to do is to go to her room and watch Whose Line Is It Anyway? over and over again. Here I would like to thank the ABC group that provides an environment in which kids with special needs can interact socially.
Here I quote the NAS as I cannot explain this any better:-
“Social imagination allows us to understand and predict other people’s behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine. Difficulties with social imagination mean that people with autism find it hard to:
- understand and interpret other people’s thoughts, feelings and actions
- predict what will happen next, or what could happen next
- understand the concept of danger, for example that running on to a busy road poses a threat to them
- engage in imaginative play and activities: children with autism may enjoy some imaginative play but prefer to act out the same scenes each time
- prepare for change and plan for the future
- cope in new or unfamiliar situations.”
From my perspective, my sister has some serious difficulties engaging in the world around her, but we wouldn’t change her for the world. Sometimes she gets stressed if her routine is disrupted, I go home and sit in her chair and I get ‘the look’ – eyebrows raised and staring at me till I move…Changing the channel during Dog the Bounty Hunter was a definite no no for a long time. Busy places, crossing a road, getting a bus, all of these things can freak her out. However, she brings up so many comedy moments which just make me laugh, for example she once asked me that if women shave their legs and armpits, do they also shave their arms and fingers? It did make me wonder why arm hair is acceptable whereas we do get rid of leg/armpit hair. Luckily for my sister, she got a place at Castle Hill High School in Stockport, which is a specialist school for children with learning and/or behavioural difficulties. In my opinion, the support that she got at this school really allowed her to flourish and I have never seen her happier than she was there. So a big thank you to all staff at Castle Hill, you rock!! As my sister gets older, it becomes more difficult as less and less support for her seems to be available and she is misunderstood.
The national autistic society campaign to create a better world for individuals with autism and I am behind them all the way.
Life and times of a former lab rat! 