I wrote this piece because I wanted to try and convey what high functioning autism is like through Polly’s eyes. We sat together and read it, and I was fully expecting her to ask me to change some (most) of it. Instead she looked at me and said “mummy, I love it, it’s exactly how I feel.” Needless to say I ended up in floods of tears…
My name is Polly, and I’m almost nine years old.
I look exactly the same as all the other kids my age, and I mostly act like them too.
I’m not the same though.
I have a neurological condition called high functioning autism. This means my brain is wired differently to most of the other kids I know.
Sometimes, when noises get too loud, inside my head starts to hurt. I know I should put on my noise cancelling headphones, but I don’t always like wearing them. If my sister is talking or singing in an annoying voice, it upsets me. I want to hit her and make her stop. Mummy says to use my words and ask her to stop instead of lashing out, but I can’t help it. My mind can’t think clearly when there is such a lot of noise going on.
Sometimes, if I’ve had a bad night’s sleep, and I’m feeling agitated, I pinch my brother. I know I should get my fiddle toys out or pinch a cushion instead, but it’s not the same. It feels nice when I pinch a person, but then I feel mean when he starts to cry.
Sometimes, when we’re eating, I take food off their plates. I know we’ve all got the same, but their food always looks better than mine, and it’s too tempting not to take it. This often leads to fights being started, but I can’t control myself. It feels unfair that they get the nicest food.
If we’re playing and they don’t listen to what I’m telling them to do, I get angry with my brother and sister. It’s annoying when they don’t follow my instructions. When they storm off to play by themselves without me, I scream “I hate you!” as loudly as I can. I don’t really hate them, but it makes me sad when they leave me out. Daddy says to jump on the trampoline and bounce away my anger instead.
Sometimes, I get cross with my brother and sister for no real reason. Mummy asks me what’s wrong, but I find it difficult to explain my feelings. When I see them playing together, and being happy, it can make me feel sad. “I wish I could be as happy as they are,” I tell mummy after I finish crying. If I’m in the right mood, I like it when she cuddles me because it helps to calm me down.
When I’m not in the mood for hugs they just annoy me even more. I get angry and start throwing things on the floor and screaming. I get so cross with mummy for not knowing that I don’t want her cuddles, and would rather watch my favourite TV shows. Next Step and Junior Bake Off always helps to calm me down, but I get sad when they end.
If I’m playing nicely with my brother, I get upset when he goes to our sister in the middle of our game. It makes me feel like he loves her more than he loves me, and I get angry and sad. I start lashing out, and then no-one wants to play with me anymore.
When my brother and sister touch my special things, I get really mad at them. I don’t like it when my things have been moved around, and aren’t in the right order. I like to have everything in the same order, every day, otherwise it makes me feel muddled.
Sometimes I cry myself to sleep, because I know I’ve not been a good big sister. I try so hard, but some days nothing I do is good enough. Once I accidentally made a glass lamp drop onto my sister’s head, and she had to go to the hospital and have it glued back together. I felt horrible inside, and was worried that she wasn’t going to come home, like Grandpa didn’t.
It’s hard for me to be a good big sister. I want to be, and I am trying, but I don’t always do the right things.
Mummy says that my autism makes me a superhero. She says I have hidden powers that my friends don’t have. Such as remembering things like an elephant, and learning things really fast. Or when I walk into a room and work out what all the different smells are. Or how good I am at baking, even though I’m so young.
Mummy says that I’ve got deep feelings, we just need to think of better ways for me to show them.
So I’m making some promises to my family. I’m going to try and walk away if I know a fight is going to start, and keep my temper under control. If I do a quiet activity like colouring or playing LEGO before I’ve got too mad it’s much easier for me to calm down.
It’s hard to be a big sister when you’re autistic like I am, but I’m trying my best.
Mummy and daddy say that’s all any of us can do.
EDIT: October 2018, myself and the very talented Maddy Bennett are turning this blog post into a children’s picture book. Stay tuned for updates!
View this post on Instagram
I promised something awesome for my #1000thpost and I hope I haven’t disappointed. A sneak peek inside the book my lovely and very talented friend @maddybennettcreative and I are working on. An adaptation of a blog post I wrote called “High Functioning Autism through Polly’s Eyes” Our aim is to help the siblings of our high functioning autistic kiddos, who just don’t understand why their brother or sister does the things they do. It’s not about shaming our kids, but empowering them. 💓 Polly is helping me fine tune the words, and Maddy is bringing the story to life with her amazing illustrations. We’re thinking of setting up a kick starter campaign and self-publishing old skool style (not through Amazon). Do you have any experience of doing this? Do you have kids who struggle with the unpredictable behaviour of their sibling on the spectrum? Would you buy the book?