That’s what it feels like most of the time telling someone you have a child who is on the Autism Spectrum. Sometimes it’s like admitting you have a problem, like being an alcoholic or drug user, who is trying to sober up or stay clean. It’s like a confession; like you’ve admitted to some deeply held secret.
And then you wait for the face. The other persons face. The eyes instantly narrow a little as the mouth opens slightly, and from it comes the sound “oh'”! Pure pity. The other person, whether it be a stranger, or a friend, or family member learning of your child’s “terrible bad luck”, that first moment they hear that word ‘Autistic’, they look at you with pity. Then they stumble over what to say next. It’s awkward, for you and especially for them. Especially if they have kids who are excelling at school, on the sporting field, at dancing, singing, gymnastics. Anything really. Suddenly they stop telling you about how their Son is acing it at school, or how many goals he scored last Saturday, or anything good or positive about their own kids. I actually like hearing other people’s stories of how well their children are doing. It makes me feel like we have a connection, this other person and I: we both have children! But when the ‘A’ word comes up, the shutters come down and the pity switch is turned on. Which is a shame, because every Parent should be proud of their kids regardless of their academic or sporting achievements. Or any ‘Disability’ they may have.
Disability. Disabilities. Dis-ability. Not able.
What is my Son not able to do? He cannot carry on a normal conversation. He cannot make eye contact, or at least very rarely. He cannot think abstract thoughts. He cannot learn at a regular school due to him not being able to do the standard education curriculum, or stay mentally or emotionally in control all of the time. Both of these things naturally make the other children uncomfortable round him. He’s different, so he gets bullied. So he cannot easily make friends. Can you imagine not having friends when you were a 7-year-old? Perhaps he doesn’t notice, that’s what people say. I’m his Dad. He notices.
But, what can he do? He can breathe. He can walk. He can eat and drink. He can use a computer, read a book, run in the park, and kick a ball. He can ask me what he is having for dinner, for a drink, or for a new toy for his Birthday.There are some kids who are so ill they can’t even do that. My heart breaks for their Parents.
My Son can also smile, and he can laugh. And when he laughs, it is pure joy and happiness. That’s one thing about Autism: it’s difficult to lie due to the abstract thought thing. I’m not saying you can’t lie with Autism, I’m just saying it doesn’t come as naturally as it does to the rest of us. So when there is emotion involved, whether its outcome is negative such as lying, or positive such as laughter, it’s true, and honest.
My Son’s smile makes my heart smile.
Has my Son got a Disability? “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” – World Health Organisation. (2012)
The society my Son lives in. Pockets of goodness with large doses of narcissism, ego-driven greed and power, and total disregard for the long or even short term impact of getting your priorities in order. I made a decision to spend the remaining time I have here on this morally misaligned planet to help other people in all forms of their life as much as I am able. I’m not perfect either, but I’m an optimist, despite my comments above. But i fear for my son in this world. In this society in which he has to interact. What happens to him when I am not here anymore?
I have been asked whether I would change my Son. As in, if I could, would I want to take his Disability away? I’ve been asked this more than once, which surprises me for various reasons. And it would seem an obvious answer, right? My Son has Autism. My God, how will he cope? How do you as a Father cope? So. If I had a chance to change my Son, would I do it?
At least not for me. Let me explain.
I would change my Son for his sake. No matter what he does for the rest of his life, he is now labelled. He has Autism. He is Autistic. He is on the Autism Spectrum. Cue the ‘pity face’! He will never be able to just go for a drink at the pub, ask for a train ticket, speak to a neighbour socially, buy a movie ticket, or apply for a regular job without the other party working out within seconds that something is different about him. And the instant that happens, he will be judged, then he will be labelled. He is labelled now by society because he has Autism. I label him every time the subject comes up. My Son has Autism. Boom, one label thanks! The world will not be kind to my Son.
So let me rephrase the question: Would I change my Son, for my Son’s sake? Absolutely.
But. Would I change my Son for me, his Father?
No. Not ever. Everything about my Son is genuine. Or to phrase that very much overused word by Management guru’s everywhere, “authentic”! You want authentic? Come see my son. He feels everything, it’s all absorbed, mixing and tumbling in his fragile little brain, then spat back out any way he can. Which is part of the problem of having Autism where you can’t interpret your environment like the rest of us can, and you basically freak out. But it’s because of this that there is no lie with my Son. What you see is what you get. So the bad can be really bad, but good is so pure and “authentic”. His disability becomes part of his personality, part of who he is. It’s all part of his character, his head, heart, and soul. And I love my Son’s character. I love his personality. I love him till the end of my days and beyond. So the answer to the question of whether I would change my Son?
No. Not ever.
My Son is imperfectly perfect. My Son has Autism. My Son makes me a better person.