Hello, I’m Jack. I am thirteen years old. I have autism, along with epilepsy, ADHD and learning difficulties. I attend a special school where there is a mixture of students with autism and other learning difficulties. Let me tell you a little bit about myself.
For many years I didn’t speak. When I eventually did develop language it wasn’t in the way that most people would expect. I would only use two or three words instead of a sentence; often I would take people by the hand and show them rather than speaking because I couldn’t find the right words to say. Most of my language consisted of echolalia (repetition of words made by another person-both immediate and delayed).Today, I speak in full sentences; however, I find it hard to understand what is being said to me. As a result I still sometimes repeat another person’s words or answer ‘yes’ regardless of what the person has just said. The one thing that I do a lot is repeat the same question over and over again. It can be very exhausting to listen to!
When communicating with me it’s best that people don’t bombard me with too much information. This hurts my head and I will respond by either covering my ears, self-harming (such as hitting my head with my fist), or hitting out. Ways that you can help me include:
- using my name first to get my attention;
- keeping language simple;
- using pictures to help me understand things;
- saying things in the order in which they will happen;
- telling me what to do, not what not to do (e.g. ‘feet on floor’ rather than ‘don’t jump on the sofa’),
- and using ‘then’ to help me understand the sequence of events (‘It’s computer, then shower’).
I don’t like change; instead, I like to do things over and over again in the same way. I have many rituals. For example, I will only eat alone, and before I sit down to eat I have to ensure that all the house lights are on, the doors are shut, certain things are put away, the cats are upstairs and under the bed (even my cats are trained to fit in with my various routines) and all ‘faces’ are out of sight. I don’t like seeing ‘faces’ at home and demand that anything with a face on it is put away.
There are many things that frighten me. I don’t like dogs, for instance. When I see a dog I will cover my ears and collapse on to the floor or try to throw something at it. Moving cars frighten me too and I will sometimes try to kick out at them as they pass. This is very dangerous, so I have to have someone with me at all times to keep me safe.
I am a lively, fun lad with boundless energy. I can keep going on very little sleep. I wake up every night and I wake early. For nine years I loved nothing but balloons. My house was full of them, which I loved to squeeze, throw, press against my body and mouth, and line up on the floor in rows. Now all I am interested in is time travel. I love prehistoric time lines and time machines, especially the TARDIS. I have my very own life-like TARDIS at home. It has levers inside, which I really enjoy pressing; in fact, I enjoy pulling and pressing levers so much I have several sets. I also enjoy Minecraft. My Dad built me an amazing TARDIS on Minecraft, complete with levers. I also enjoy moving in and out of the different Minecraft time portals.
I can concentrate for long periods of time on activities that I enjoy. At other times I am easily distracted and constantly on the go. Always, though, it is hard to get my attention. My pursuit of preferred activities means that if it weren’t for my Mum and Dad I would forget to drink, eat or go to the toilet.
One question that my Mum and Dad often get asked is whether I have a special talent. Well, no, I am not a savant. A savant is a person with autism who is exceptionally gifted in a specialised field. These people are actually quite rare! An interesting thing about me is that while I am very good at some things, I find other, easier things difficult. For example, I am very good at sport. I can run fast, swim well and I am good at gymnastics. I have many gold medals! Yet, I cannot perform simple tasks like holding a spoon, knife or fork; I cannot brush my own teeth, ride a bike or do up buttons. Due to my resistance to change, sensory issues and learning difficulties I need help with daily living skills like toileting, dressing/undressing, eating, hygiene tasks (washing, brushing teeth, etc.), and cutting hair and nails.
Anxiety, and managing anxiety, is a real struggle for me. I get anxious for many, many reasons. The social world confuses and overwhelms me. I find it hard reading people’s facial expressions, their tone of voice, the meaning in what they say. I find it difficult to put myself into their shoes. I struggle to make sense of time and I have an inability to wait and to share; therefore, I prefer to play alone rather than with my peers.
Due to my difficulties I can often become frustrated, confused, angry and scared and this can lead to meltdowns. This is different to a temper tantrum. During a meltdown I lose all sense of control and I don’t care whether someone pays me attention or not, or even if my needs are met. During a meltdown I will be destructive, throwing and breaking things; I will also hurt myself and will hurt others. I also have no sense of danger. During one meltdown I tried to jump out of an upstairs window; during another I jumped into open water (my mum and her friend jumped in and saved me). I am not being naughty during a meltdown. It is a very frightening experience for me and it takes a long time for me to calm down.
All in all, I am happy living with my family in Wales. I like the peace and quiet of the countryside. I enjoy living near the sea, and on a quiet day there is nothing I like more than to chase seagulls on the beach or draw pictures in the sand. Perhaps one of the most hurtful myths about autism is that we are incapable of love… Well nothing could be further from the truth. I love and am loved deeply in return, and all who get to know me are captivated by my bouncy, cheeky personality.
Written by Dawn Cavanagh (Jack’s mum – on behalf of Jack Cavanagh).
We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on firstname.lastname@example.org