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Autism is

I would like to talk to you about autism. I know, we talk about autism a lot, you and I. But somehow things have gotten off track and I really think that I need to make something very clear. Not for for you or my neighbor or for other people but for me, right here, right now.

I have been living with autism my entire life and didn’t even know it. It wasn’t until I discovered that my son has autism that I truly came to grips with what it really is. And I’m not talking about what I’ve read in medical research studies or transcripts or expert opinions or even public opinions. What I mean is, I know what autism is, to me.

autism isThis may sound a little strange but in a very general sense, autism is everything and it is nothing too.

Autism is the way a person perceives the world around them. It is the way they take it in, interact with it, experience it, process it and live with it. It’s the filter with which all reality flows through before becoming our own reality. It shapes a person’s past as well as their future. With each step forward, all that is involved in that step flows through a vail of autism which invariably alters the course they take towards their next step. Each step being a direct result of the step before it, exponentially affecting further steps ahead. We become a product of our combined experiences, each of which, affected and altered, whether for better or worse, as an effect of autism.

At the same time, autism is nothing, neither tangible or quantitative in it’s existence any more than any other thought, memory, expression, synaptic response or neurological interpretation to stimuli that every living thing is privileged with in it’s existence. It’s a unique perception unlike any other making it exactly the same as any other. It’s a tasteless, touchless, odorless, inaudible and invisible anomaly that isn’t really there.

There’s more, and this is important. So hear me out.

Autism is not a fight between parents. Autism is not a battle with the school board. It’s not about who is functioning higher or lower than someone else or even about what “functioning” even means nor is it about who should and shouldn’t be cured.

Autism is not about what a person looks like and it’s most certainly not about tendencies that a person might have, homicidal or otherwise. It’s not about taxing the system or making life hard on a parent and it’s definitely not about organ transplant bureaucracy.

Autism is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me.

I am tired. I’m tired of all of this.

I’m tired of reading stories in the news about mothers killing their autistic children. I’m tired of people making horrendous and false claims in the name of autism. I’m tired of the fighting, I’m tired of the name calling and I’m tired of the people who can’t admit when they’re wrong. I’m tired of people that are judgmental and I’m tired of the people who think it’s funny. I’m tired of people telling me what I should and shouldn’t believe, what I should and shouldn’t say and what I should and shouldn’t think.

I’m really, just tired. Very tired.

So here it is, as simple as can be.

Autism is me. It’s my son. It’s the little girl who can’t speak but screams with every breath she takes. It’s the little boy that completely loses control one moment but creates his own computer operating system the next.

Autism is the man that needs a heart transplant to live. Autism is the young woman that goes to Washington to fight for people she doesn’t even know but loves.

Autism is the life taken far too early by the parent that didn’t know what else to do. Autism is the life that wandered away from safety, scared and unknowing of the dangers around them.

Autism is not a disease. Autism is not a battlefield. Autism is not an opinion.

Figure it out. Work it out.

Because autism is a lot of people.

Autism is the perception, the experiences and the reality that effects and shapes what is to become a person’s life and yet, it’s nothing too, for all the same reasons.

It’s people.

It’s lives.

Autism is.

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Inside the mind of a child

I often hear people saying that they wish they could be 5 again, when their biggest concerns were which colour M&M’s to eat first… or not being able to play outside because it’s raining.

Yes, life certainly doesn’t get any easier when you become an adult but that’s no reason to dismiss their concerns as unimportant. It is all a matter of relativity… the biggest concern in your world is just as important to you as the biggest concern in someone else’s world… even though hey might not measure up to an outside observer.

Allow me to put it another way… what is happening inside the mind of a 5 year old is not just as real as what’s happening in your head, it could be more so and thus, an even greater concern.

You and I are limited by the bounds of reality… that is to say, we know the rules, we know what will and won’t happen as we face each situation. To a 5 year old, their imagination is the limit and there is no limit to a 5 year old’s imagination.

Let me give you an example from just a few hours ago, when my son woke up at 5:30am.

I was awoken by the sound of foot steps but not regular foot steps… tip toe steps. Yes, I’m a light sleeper when it comes to my boys. I heard a few steps and then it was gone. At this point I had to wonder if I heard it at all, if he had just stopped in the hallway, if he was just going to the bathroom… it’s a lot to wonder when you just woke up.

A moment later, I heard his little voice coming from the living room. “Hello?? Where is everybody?? Hello!!!! I’m all alone.”

He sat on the couch, in the dark, convinced that he was all alone in the house… that we had all abandoned him.

My first instinct was to say “silly boy, we were just sleeping in the other room, same as every night” but to see how sad he was, he was completely and totally convinced that he was now going to live the rest of his life alone. I don’t know what dream he was having or if it was just some random feeling he got when he awoke but in his mind, it was very very real.

You and I would know to check the other room, you and I would know that something like that just doesn’t happen. To a 5 year old, who’s imagination blurs the lines of reality and has no limits to it’s endless possibilities…. it was far more real than anything that we will likely experience as adults. He was certain, beyond a shadow of doubt, that he was alone.

A child’s mind can create a world of extremely large, very friendly dinosaurs… or it can create a a world of very scary monsters that only come out at bed time. Maybe it’s all in their head and maybe it’s not as scary as tax season is to us but to them, it’s far more real than anything we have to deal with.

Don’t dismiss their concerns as trivial compared to your own. Imagination can be a very powerful thing if not respected.

Comments { 5 }

Reality vs Fantasy – Autism Chooses… Fantasy

In Cameron’s case, he much prefers fantasy over reality because it helps him to do several things, including blocking out various things in reality that overwhelm him such as sounds, sights and smells. Also, it gives him control which is ultimately why anyone likes to day dream… he can get the specific answers he wants back to his questions if he’s asking an imaginary person.

I’d like to give you an example from this previous week-end, Cameron found a stop watch that looked somewhat similar to a cell phone. He knew full well that it was not actually a phone but for him, this gave him the opportunity to phone his grandmother and talk to her. He asked when she was coming to his house, what she was doing and had a full conversation.

Afterwards, I actually did call his grandmother and he absolutely refused to say a single word into the real phone. When I put the phone near him, he bent right over in order to avoid having it anywhere near his face and ear.

Many times we’ll ask Cameron if he wants to go outside, or to the park, or the beach… any number of places that we know he really enjoys and most often times he’ll say no. He’s quite content to just grab a couple of toys and pretend they are something they’re not but once we drag him out, he has a great time and doesn’t want to come back in.

Once put into the position he’s fine, but given the choice before hand, he’d much rather stay in his own fantasy world where he has control and feels safe.

Given that I’m older, not Autistic and have a better understanding of the world around us…. I can’t blame him for choosing fantasy.

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