Sunday, August 23, 2009

Explaining Autism to the Autistic

About a year to a year and a half ago, I mentioned to Pooh that he had autism. He asked "What is autism?" and my reply was something to the effect "It's when something is different about your brain that makes it hard for you to do/understand certain things." I mentioned it twice and after the second time he said: "No, I don't have autism." I left it at that.

At the beginning of August, we went with another family on a hike at a nearby mountain. While we were at the Welcome Center, I noticed another father there with his son. There were two reasons I noticed them. I heard loud, repetitive noises coming from the son, and I saw the father wearing some type of autism awareness t-shirt. Right after my noticing them, I heard Pooh say: "There's something wrong with that kid." He said it to me in a quiet way. It didn't reach the ears of said kid or parent, which I thought was significant on Pooh's part. He had enough awareness to just quietly tell me.

What an opportunity! I immediately explained to Pooh that "No, he has autism just like you do." I again got the "What's autism?" Now, my replies aren't exactly tactful. They aren't sugar coated. They just are what they are. Especially since I wasn't exactly prepared to have a 'conversation' about it. So I said "It's when something in your brain doesn't work right. For him, autism makes him make those noises. For you, it makes it hard to control your anger." Pooh accepted that.

And this was really sweet--I mentioned that I know sometimes those noises can be annoying. Pooh said, "No, they don't annoy me. I can just ignore them." Purple Puddles! as FLYLADY would say!

I know that different families have different ways of looking at Autism. Some would say it's not a disability. Some say it's just a different way of living. Some use the expression disABILITY. I'm all for looking for the positive as you'll see later in what we ended up doing. However, I want Pooh to understand that for him, it IS a disability. This is not the norm. It isn't how we're supposed to be made. This will be a challenge in his life. There are obstacles to overcome. I believe it's the first step in him seeing why he needs to work on certain things. To me it's no different than someone born without a leg or with diabetes. It's ok to say "I have a disability. I was born without a leg. These are the ways I deal with that challenge." I want Pooh to be able to say "I have autism. It makes it hard to do (fill in the blank). These are the ways I can cope/deal with that challenge." I want him to understand why it looks easy for his friends to do certain things while it's harder for him. I think acknowledgment needs to be made (if possible) for self-esteem purposes and for life in general. People with auto-immune illnesses tend to talk about wanting 'validation'. I think the same applies for understanding autism. Validate their difficulties by explaining it is a problem that has to be overcome/dealt with.

Anyway, for about a week and a half, we had a few conversations with Pooh on autism and how it affects him. The first few times he would try to remember the name of it and instead say "You know, that thing with my brain?" One time Tigger piped up, "OH! You mean Asthma!" Noooooo! It's not asthma! LOL It's Autism. "Oh yeah, autism."

We explained to Pooh that when he was little he would scream A LOT and he stopped talking. We decided to take him to the doctor and that's what the doctor told us, he has autism. He replied, "You mean I was born with it?!?" Yes, Pooh, you were born with it. That was quite a revelation to him.

We explained that autism is the reason that he wants to talk about history all the time. The reason he gets angry so much. The reason that he doesn't always understand what people are talking about.

He asked a few questions about it. He looked like he was going to cry and said he was worried his friends wouldn't like him because he had autism. We reassured him that his friends already know and that they still like him. He asked if I had it, if Dad had it, if Tigger had it. No to all of those. That bothered him a bit. I then explained that even though Tigger doesn't have autism he has a dairy allergy and he can't have cow milk. That even though Mom and Dad don't have autism, our brains make us forget stuff all the time, because we're getting old. ;D He grinned at that. We talked about how lots of people have different problems and that we (people with problems) have to learn how to deal with them.

As a family we sat and made a chart. On one side it lists Qualities and on the other Challenges. We all started by naming qualities that we liked about Pooh (he joined in). We also mentioned his challenges. At the end Tigger piped up and said "Mommy, there are more good things than bad things!" Pooh smiled, nodded yes and hugged his Dad.

Pooh has even already started using it as an excuse, much to our amazement. Reason for not listening: "That thing with my brain." After a bit of frustration on my part I say to him, "I don't understand what the deal is. You were fine all day and now all of a sudden you're all grumpy! What is the deal?!?" Pooh responds in his best teenager voice, "You know, I have auuuu-tismmmm." Choke back the laughter. I had to. :D

We've also discussed not using it as an excuse but instead working on those things that cause difficulties. Like anger, movie line quoting, etc.

We discussed our bible based hope for the future when "No resident will say 'I am sick.'" Is. 33:24. It was very comforting to him.

I consider this Phase 1 in our autism conversations. I am very satisfied with how they went. Hopefully, Phase 2 will go as smoothly.


live4evermom said...

That was perfect. Exactly what I did with my son and letting him know about his dyslexia.

We all have things we have to work on. The hope for the future is what we all look forward to.

The Glasers said...

Wonderful, wonderful post . . . I love how you shared the truth with grace and kindness!

argsmommy said...

Thank you for sharing this link over at Carla's blog. I've been thinking so much lately about how to have this conversation with my son, and I find it so helpful and encouraging to know how other parents have handled it.