Hello! My name is Rich, and my Son has Autism!

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? Β 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?Β “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?

No.

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.

31 thoughts on “Hello! My name is Rich, and my Son has Autism!

  1. great post!! πŸ™‚ I absolutely agree!! My brother was autistic, and I am not a special ed teacher (majority of my students are on the spectrum) and I am tired of people viewing this as a disability. Children on the spectrum just do things differently. They think differently. They need to learn and be taught techniques that will make them more confident and successful in the “real ” world, but when will people start learning more about the spectrum and start conforming to their thoughts, beliefs and problem solving? πŸ™‚ Good for you “dad”

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  2. Very powerful post! So sincere and courageous! Thanks for sharing and warm regards to your son. Life is complicated but I’m also an optimist like you, and I believe your son would have a great life, even when you’re gone.

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  3. Well written and lovely. My son is 20 years old tomorrow and I still find the birthdays hard at times as these sometimes show me how different he is. But like you I love him and who he is the way he is. I just wish the world would take this on as well.

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  4. Autism is not a disability but the symptoms can be disabling. I’m really not sure which side I’m on anymore. I’ve been the Autistic people > NT, I’ve been the ‘we are gifted/different’, I’ve been ‘CURE-ME-NOW-I-HATE-THIS-CONDITION. Now I don’t know. It’s a difference which comes with impairments and it never really made sense to me why people would see it as a gift. I don’t even like the word ‘gift.’ I have no problem saying it’s a disorder. It also feels like it’s who I am. I wouldn’t even see my ADHD as a difference, but an absolute annoyance that has put up learning barriers for me. I just live with a lot of mental illness and disorder. The pity gets a bit annoying though. You must remember if autism was not a disorder it would not exist as a diagnosis and there would be no autistic community, where most people are trying to get others to view it as a ‘difference not disability.’
    I’m autistic, which means my brain is wired differently and that makes living in the world and interacting with people a very confusing experience. Autism just is me. I don’t care about calling it much more than that.

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  5. Great feelings. Your son is very fortunate to have a father like you. It’s the near and dear ones who matter the most. With your love and understanding and skilful handling, I am sure he will gain enough confidence to wade through in life……and, why do you worry about the time when you won’t be alive? Have trust in the Master Plan of the Supreme Power….He will surely pave a way for him
    ! Why don’t you just visit the Art of Living centre in your place once…please visit our website http://www.artofliving.org for all contact information.

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  6. A huge number of the kids I love are also on the Spectrum, and we have the most typical of relationships — we make each other want to pull out our hair from time to time, but against a background of loving each other and enjoying all the shared experiences. Thrilled that you put such love into words!

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  7. I agree completely. My son is Autistic as well and his future terrifies me but I am hopeful. We have been blessed with an aide at school that loves him and understands him but won’t let him use Autism as a crutch. She has absolute confidence that he’ll make it. I hope all the best for you and you family. Thank you for writing this.

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  8. You are amazing…It amazing the way you feel about your son..he is lucky to have a father like you…it’s because of you amazing strength that good picked you as his father …

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  9. Wonderful, heart felt post. I have known several autistic people of my life, and each of them was a wonderful influence in my life. Sadly, I cannot claim them as good friends – issues besides the way they think caused the problems. I usually enjoyed spending time with them, and I absolutely loved watching them explore what they COULD do, and watching them reach for the stars. (They usually reached them too.)

    I agree that the bias against anyone “different” needs to go away. different just means they have a way you haven’t thought of first. It doesn’t mean it isn’t valid. Often, watching someone “different” reach some goal, you can learn another way to achieve your own.

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  10. I was moved by this post, especially the part about authenticity and “lacking the ability to lie”. Powerful. As a parent, I appreciate learning more about how questions/comments are perceived by parents with children who have autism.

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  11. Do you actually live with your son? I wonder,if you did you would know what he is actually capable of instead of pointing out what YOU think he can’t do. Our ASD kids deserve more credit!

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    • HeyMB,
      Thanks for taking the time to read this.
      I admit this piece could be confronting for those on the Spectrum, or parents of those on the Spectrum. I wrote this purely as both a Father’s and my own point of view and feelings. Limiting or giving the perception of limiting my Son and others is not the purpose. Like you, I want to change what people perceive ASD to be. Thanks for the comment.

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