Kevin's Thoughts on Autism

We had a tough morning.

Kevin was in tears, and refused to participate in any of his morning routine, because he simply couldn't understand why he has to go school. To him, it is unfair.  Why do we only get 2 days for the weekend, but there are 5 days of school?  Why can't he stay home and play on his computer, where he is happy? Why do we force him to eat breakfast, get dressed, brush his teeth, and put his coat and shoes on EVERY SINGLE DAY? 

In my mind, it was more like, why do I have to go through this debate almost EVERY SINGLE DAY? Why can't he simply accept that some things just are the way they are, some rules must be followed, that sometimes, we don't have a choice in the matter? Sometimes, life ISN'T fair, but that's too bad; being a part of society requires we fulfill certain responsibilities, whether we like it or not.  

Still, it breaks my heart every time the anxious, harassed, overwhelmed mom in me doesn't have the patience to deal with these meltdowns, loses her cool, begins yelling and manhandling this boy, simply because she doesn't have the time or energy to deal with this in order to get him to school on time.

I wish I had a better understanding of how to reach my boy, soothe his school-related anxieties, and peacefully reason him into a positive mind-set to prepare for the school day ahead.

I also wish I understood more about how his brain works.  What is he thinking? Why does he feel the way he feels? 

This led me to contemplating how my 8-year-old son perceives his autism.  

I recently read a heart-wrenching story about a young girl who was writing notes to her teachers and parents from her hiding spot under a desk at school, where she placed herself because she feared others perceived her as "bad." Kevin has told me in the past that he has "the kind of autism that makes you be bad."  While I quickly corrected his misconception, we haven't had a serious discussion about this in a while. This afternoon, I decided it was time to have a chat with Kevin about how he views his autism.  Has he let go of his previous misconceptions? 

Here is a transcript of our conversation.  I've written it in his voice, using his exact words, so you can feel the rhythm of his speech and thoughts.

If someone asked you, "What is autism?", how would you explain it to them?
Well, I would say it makes it a lot harder to control yourself. And it can also give you special needs.

What kind of special needs?
Something like, you can get tired easily.  You have something you like, so you don't do it. That kind of thing. Special needs.

How do you feel about having autism?
Well, it feels kind of strange because some people don't have autism. Plus, it makes it feel a bit harder, which I don't like that part.  But it is true that, on the other side, autism can make it good. Because probably without autism, I wouldn't have all my sounds. Yeah, I like my sounds.

Speaking of your "sounds," why do you make noises, instead of using words, to show your feelings?
The reason I do that with my sounds is since, I was just like, born like that.  But another way to describe it is that I decided from my autism it might have made it for that reason.  And the reason why I actually do it though is because I use my sounds to explain how my mood is, but it's usually hard to tell what's wrong, though.

So, is it easier for you to use sounds than words?
Yeah, plus I have to use less words often.

Is using words hard for you sometimes?
Yeah.

What do you want people to know or understand better about your autism?
I wish they would understand, like, some of my own special needs for autism; and for the people that do know that, understand my sounds more since I use them more often.

So, what kind of "special needs" do people need to understand? Can you give me some examples?
So, something like one of my special needs is I can get angry easily. That if I get angry, there's not too many ways to calm me down, though.

Is there anything people can do to help you when you're upset?
Well, sometimes like, they can, based on like who it might be, sometimes just like trying to make up and saying sorry just like usual people, though.  And there is a few more ways like if I kind of stay in one room by myself with a little bit of quiet. And it's also sometimes easy when I can, like, usually sometimes just play on my video games and not lose or anything; that might calm me down.

Why do you get so upset about going to school most days?
Because 1) I just like to play on my computer, and the thing is you like, can't bring any electronics to school unless it's a special day like Loonie License Day or something like that.  And otherwise, you do have to do work. But really, there is at least one more thing I should say, which would be it makes it a bit harder because it's much more loud there since there's more people than at home. That's probably all I can remember right now.

Sometimes you get upset even if we're going to places where you can relax and have fun, like Grandma and Papa's. Can you explain why?
Because sometimes I'd rather just relax at home than get dressed or like get ready, having to put my shoes and coat on, and waiting to drive there, even if it's like a short drive, to like Grama and Papa's.

Why is that hard for you, getting ready and all that stuff?
Because like, for my shoes, I have a different way of putting them on, so I kind of pull them back a little bit, but that doesn't really seem frustrating.  It's my coat, because it sometimes, even though it eventually does go up, the zipper doesn't really go up sometimes, which might get a bit frustrating about getting ready.

Remember yesterday, you were sad about there being "lots of people" at Grandma and Papa's. Is it hard for you to go places where there are lots of people?
Well, I was actually sad [voice wobbles] because it was so loud I was getting a little bit of a headache.

Can you explain why you have a hard time falling asleep and staying asleep at night?
It's like, since I was trying to go to sleep, it's like since I was playing on my video games all day, even if I was doing something like playing with my plushes all the next half hour, pretty much doing anything other than relaxing in my bed or something, that can make my body think it's still time to be hyper so it makes it hard for me to fall asleep.

What do you think would happen if we stopped playing video games before bedtime?
That is okay, but there's one little thing, though. That includes like even watching TV, playing plushes, pretty much anything. Yeah, anything makes me hyper before bed.  When I'm in bed, my body thinks it's still time to play because I just played.

So, what do you think we should do to help you relax? Any ideas?
Hmm . . . Well, let's see, like maybe going to bed a bit earlier sometimes?

Do you think you would like that?
No, not really.

What else do you think we could try?
So, I was thinking like, if maybe when I go to bed, like I have something comfy or something, maybe. Something like my plushes, basically. So I can try that.

What do you think about Ryan's autism?
His autism, well, he can't like, talk and he has a harder time learning things and he needs a lot more help than I do to do things.

Is it hard having a little brother with autism, when you have it, too?
Well, when I would have it, too, it does seem to be a little hard at times, but sometimes it feels better when he's happy. Because when he's mad he cries a lot, and since I have like extra-special needs, it makes me really angry, so I start getting angry while he's crying. I don't like it when he cries. It makes me angry because it hurts my ears a lot.

What's one last thing you want people to understand about people with autism?
One last thing is that I do have some like, have some different ideas about about entertaining people. A normal person would play with you to entertain you, while autism people might watch or do something else nobody else can do. Like I do my sounds [blows raspberry/motorboat imitation]. But that's just MY autism.

Tell me some good things about you. What can you do well? What makes you special?
I can do addition.
My autism makes everyone who knows me care about me and love me.
I seem to have talents like being able to control myself once in a while. I also can have fights but they're actually usually not TOO big: nothing really, really, bad.
I have autism. Not actually everyone has it.  Some people do, like me.
That's it.

It was a good conversation.  I didn't really learn anything new, but I could tell he appreciated the fact that I was asking him to share his thoughts. I'm not sure he's ever really contemplated, in depth, his autism; it's simply always been a part of him. I was glad to see that the word "bad" didn't appear in his description of autism; however, I see where I will have many opportunities to teach him more about autism in the near future. I'd like him to understand that autism is about neurodiversity, and that neurodiversity is something that makes him special.  I'd like him to know that "special needs" doesn't refer to his deficits, but more to the ways in which others can support him. I'd like to focus more on his gifts, and what we can do to nurture them, than on the difficult behaviours.  

This conversation is a starting point.

I hope he recognizes that I asked him all these questions because I love him, and I want to help him. I want him to know that I hear him. I do. It may seem as if we are in an endless round of circular debates at times, but I want to keep this precious line of communication open. It is something that many ASD parents long to experience with their child; I know, for I have another little one with ASD, who as yet, cannot share his thoughts with me.