Autism. This small word attempts to describe what life is like for millions of families across the world who share some similar behaviours and traits, but are also completely unique. Being blessed with two boys how are autistic I’ve come to appreciate this first-hand!
Often when I tell somebody that my sons are autistic I get a knowing look. They know what autism is, their sister’s boyfriend’s cousin’s son is autistic, or they’ve seen something on tv about autism, like the A-Word or Rain Man. They think back to what they’ve heard about that person (or what they’ve seen on tv) and picture Jude and Tommy being very similar.
But autism doesn’t work like that. Not only are Jude and Tommy usually completely different to anyone they’ve met who is autistic, I then have to explain just how different they are to each other!
The first couple of years after Jude was diagnosed with autism, I spent many days and nights searching Google. I scoured the internet trying to find stories about children who were similar to Jude, looking for a glimpse into what the future was going to be like, and find out what I should be doing right now to make life better for him.
Whilst I could identify with some families, I soon realised the more that I read, that everybody is so different, and the vastness of the spectrum became clear. Once Tommy was born I soon came to realise this first hand.
So, here’s a glimpse into what autism means in our house…
Autism is being intrigued by new people, approaching them, and wanting to interact with them. It’s climbing all over them, leading them by the hand to ask them for food, sitting on their lap, getting them involved in their game. It is trying to talk to them and expecting them to understand their limited communication skills.
Autism is avoiding new people as much as he can. It’s running off upstairs when someone new comes in. It’s not allowing me to speak to anyone when we’re outside the home, dragging me away as quickly as he can. It’s not letting me talk to anyone on the phone when we’re together, for some reason this is too distressing.
Autism is not being able to walk along the road without having his hand in a vice-like grip. It’s collapsing limply to the floor if he doesn’t want to go in that direction or if he wants to escape and investigate a letterbox, a puddle, or a collection of stones. If he does break free of my hand it’s sprinting in any direction he chooses, oblivious to the dangers of the road.
Autism is walking calmly a few paces behind me, only holding hands when crossing the road. Some days it’s being unable to walk very far, the anxiety of the experience too much to bear. On other days it’s being able to walk for hours, happily flapping and taking in all that the environment has to offer.
Autism is needing to wear ear defenders when going out to block out the noise of other people
Autism is refusing to wear ear defenders, then walking around with his fingers in his ears
Autism is making 100+ piece puzzles with only a fleeting glance at the picture on the box. It’s mixing 3 or 4 together and making them at the same time. It’s making them back to front and upside down. It’s knowing exactly what piece he wants to find and not going any further until he finds it.
Autism is reluctantly making 1-2 piece puzzles. It’s puzzle pieces being more fun to eat and throw than they are to be made.
Autism is bouncing on the trampoline like an elephant, crashing from side to side, launching himself head first into the netting.
Autism is bouncing like a trampolinist despite never being shown how. It’s performing routines with a huge smile on his face, clambering off and back on again every few minutes.
Autism is only waking up during the night if he’s ill. It’s (until recently) going to bed by 8pm every night and staying there. It’s bouncing out of bed the second he wakes up, ready to take on the new day.
Autism is waking up countless times every night. It’s sharing a bed for 7 years, it’s going to bed late, waking up for 3-4 hours in the middle of the night, then oversleeping. It’s being dragged out of bed to start the day.
Autism is only eating a very limited diet. It’s sometimes eating only the coating of the chicken nuggets, sometimes just the inside, and others the whole thing. It’s breaking off a chunk of the first biscuit he’s given and putting it in the bin before eating the rest. It’s eating certain foods in certain houses and not in others.
Autism is a diet that’s expanding so much over time. It’s eating fish, chicken and sausages after years of not eating any of them. It’s loving egg noodles, bread, and rice. It’s eating all of these food using his hands instead of cutlery, rarely ever sitting still whilst doing so
Autism is refusing, absolutely refusing to eat any kind of fruit.
Autism is eating the whole fruit bowl if it’s left within reach.
Autism is climbing on everything. Tables, tv units, cupboards, shelves, headboards, anything that can allow him to jump from a greater height. It’s constantly climbing up onto the kitchen side so that he can reach the food cupboards and help himself
Autism is never trying to climb. It’s needing help and support to go up the steps of the slide in the park. It’s never dreaming of trying to get onto the kitchen side. It used to be crossing room thresholds by bum shuffling across them, too unsure of the dangers of crossing them. It’s being so deliberate and careful with every movement that climbing and jumping are just not an option.
Autism is loving being in the car, happy to drive for hours whilst listening to the radio. It’s seeing the car as a safe space, one that provides a calming sensory experience.
Autism is being bored after 15 minutes in the car. It’s trying to, slide out of his seat belt and climb around the car, and even open the back doors whilst driving. It’s kicking the front seat over and over, and screaming as loud as he can, throwing anything within reach. It’s the car being a frustrating, boring experience.
Autism is going to the park and being fascinated by the sand pit, refusing to try any of the other things to play on, choosing to flick sand instead.
Autism is loving the swings and the roundabout, but only if the park is empty.
Autism is trying so hard to speak and communicate. It’s saying word like sounds, with the odd word thrown in, then going weeks and months without saying them again. It’s loving trying to communicate with people, dragging them closer to say words that he likes in his ear. It’s repeating the sound of those words over and over again.
Autism is being unable to communicate verbally right now. It’s using physical prompts and actions to get what he wants. It’s being overwhelmed by too much talking, preferring people to be quiet around him, talking very little.
Autism is loving to study his books and flick from page to page. It’s grabbing other people to point at characters and say their names back to him. It’s watching peoples faces as they tell him the names, laughing, trying to formulate the word in his mind.
Autism is being uninterested in books. It’s choosing to throw them around, occasionally chewing on some of the pages.
Autism is never wanting to stray too far from my side, dragging me from room to room with him. If the garden door is open it’s taking me with him to make sure I’m close by. It’s never dreaming of wandering off, checking where I am every few steps.
Autism is trying to escape at any given opportunity. It’s attempting to open every door and window in the house, and making a break for it if a door is left open for a second. It’s no fear of what could happen if he succeeded.
Autism is loving being on a boat. It’s sitting down throughout the journey, flapping and enjoying the sensations the speed of the boat creates.
Autism is loving being on a boat, but never sitting still for a second. It’s trying to throw everything overboard, and wanting to jump into the water himself.
Autism is enjoying kicking a ball around, throwing with laser like accuracy and being able to catch a ball when he puts his mind to it.
Autism is never once kicking a ball around. It’s throwing objects for cause and effect, but never as part of a game with someone else.
Autism is self-harming when things go wrong. It’s crying, slapping, stomping and jumping onto his knees. It’s always aimed at himself
Autism is screaming when things go wrong as loud as he can. It’s slapping, kicking and spitting, but always aimed at others.
Autism is being soft and gentle in everything he does. It’s gracefully gliding around the house. It’s wanting long, deep cuddles, massage and squeezes.
Autism is being rough and heavy-handed. It’s being incredibly loud with every step he takes, as he runs and jumps everywhere.
Autism is just a word with an impossible job. It’s a word that attempts to describe millions of individuals, each of who are just as unique as Tommy and Jude.
In our house autism is love, complete, all consuming, unconditional love.