“Do I have Autism mummy?”
I have to say I wasn’t prepared for this question. I didn’t even see it coming. I didn’t feel awkward about speaking to my 5 and a half year old son about his Autism because of taboo, fear or denial – which are the main things tackled when reading awareness and educational articles… for me it was knowing ‘how’ to speak about it all with him in terms he can process.
For the most part, my son is blissfully unaware of some of the things he does that people on the outside of our life may look in and see as different. He doesn’t read people’s emotions or social cues very well, so doesn’t tend to see the side looks of confusion often put his way when he reacts to his peer’s greetings for example. He doesn’t see the desperate look for help directed to me when somebody can’t understand what he’s frustratingly trying to explain to them, or the bemusement when he has seemed to be partaking in a conversation with someone but actually is just repeating back parts of his favourite video or game scripts.
Starting school was a big step for him. He had never enjoyed socialising with kids of his own age. One of his only friends during his time at preschool was a little girl with selective mutism, they would communicate through side-by-side play and sometimes holding hands. If things got too much for either one of them, they’d go and sit under a table together. My son often helped his friend communicate in ways she felt unable to and the same for her. It was lovely seeing his potential for friendship back then and that has definitely blossomed since starting school.
Along with these positive steps forward, comes a lot of baggage for a five and a half year old to carry around. He wants to make friends, build relationships and form bonds with peers but alongside this he is starting to realise that he processes certain things in different ways and sometimes behaves and feels differently to most of his friends. He is an intelligent lad and with our support using social stories, visual aids, child-led activities and positive reinforcements over the past 18 months he has been able to bring his social functioning up and reduce some of his anxieties down. During school he wants to fit in, so he ‘masks’ some of his neurodiverse behaviours. At home he vocally tics. A LOT. If he’s concentrating, talking to you, listening to you, watching something, reading something… in any break or chance he gets, he is usually humming, grunting or clearing his throat. He repeats things and motions a lot. He also flaps his arms regularly when he experiences stronger emotions. However at school he doesn’t tend to do these things. I’ve never really spoken to him about this at length as if you try to talk to him about a subject he doesn’t want to speak about then it can be a very distressing situation but just recently he’s been bringing it up himself.
He spoke about his humming on the way to school a few days ago, expressing to me that he enjoys it as it makes him feel happy and safe but he doesn’t feel like he wants to do it at school because:
I can’t lie. It broke my heart to hear him even slightly think he has to change how he is because what he wants to do isn’t ‘normal’. It was really hard to talk to him about this as his parent – as in a way, he’s also right even though his chosen words or terminologies (due to being small) are incorrect. To some extent we all have to curb aspects of our personalities to be able to function within society’s demands – this shouldn’t be for anyone else, it should be for us alone. Just because he has Autism, shouldn’t mean that he doesn’t have to do that too or that it is bad to want to do that. At the same time I want him to know that there may be things he wants to control or curb but can’t and that’s fine too. I want him to learn about his Autism and how things affect him if he wants to, and to live his life how HE chooses to do so.
It’s really difficult to talk to a 5 and a half year old about stuff like this when a lot of the time their little life views (especially my son) are very black and white. How do I explain what Autism is? How do I explain that some of his behaviours are neurodiverse but that’s not a bad thing… but that if he wants to work at changing some of those behaviours then that’s ok… but if he doesn’t want to then that’s ok, too. It’s confusing for me to think about let alone for a small boy who’s world usually revolves around things being yes or no, real or pretend, good and bad…
So I guess I don’t really have an actual point with this post today, only that this is one of the many things that as a parent of a child with Autism i’m having to face unprepared and blindly. I’m guessing there will be many more along the way, too. I will never know how it feels to be him but I do know that I want him to feel 100% supported and loved by me whatever he’s feeling, whatever he is going through and however he chooses to live his life.
Do you have a child/children with Autism? Do you have any tips to share for talking with your children about their Autism? I’d love to read your comments below.