Autism Doesn’t Follow The Rules

Our family’s version of autism is a little like Wheel of Fortune. Every morning, we spin the big wheel and watch in anticipation as all of Max’s attitudes spin round and round. Whatever attitude it lands on usually dictates how the whole family’s day will go. I will say that most days we land on “pleasant” or “tolerable”, but have a couple hiccups throughout the day. Sometimes we score big and land on “humorous” or “excited.” We don’t know if it’s diet, sleep, whatever. It just happens.

This last Sunday was different, as the needle happened to land on “fearful”. I wasn’t surprised. I’ve seen it coming for a week or so. He and I had been skiing a couple times the week prior, and something was off both times. I could see fear creeping in. Fear of skiing – one of his favorite things in the whole world. And we were to go later that day after church.

It has happened a few times with other things that are at the top of his favorites list. It’s almost as if some things bring him so much joy that it tips him over just enough for the joy to become anxiety. At any rate, he woke up on a tirade against going skiing.

We drove two cars to church because I was going to be late. When I got there, I walked in and sat with the family. Max was bawling. I looked up at Jamie, and she looked heartbroken. I figured she had tried everything and was out of options. I pulled Max toward me and he cuddled in tight. Usually, when he’s angry, he wants nothing to do with me. When he’s scared, he’ll get close to me. I knew he was scared to go skiing and I had to figure out why.

I pulled him from the main congregation, and we went downstairs to the basement and had a seat on the couch. The conversation escalated quickly because he knew I’d try to talk him into going up on the mountain later that day.

I went through all my normal explanations and reasons for my side of the argument. His side was pretty irrational to the point where he was having trouble putting logical sentences together. It’s our typical routine. But it wasn’t working.

When it gets really bad, he starts getting hard on himself. Somewhere deep inside, I know he realizes that he has barriers that even he doesn’t understand. It frustrates him. Here is what was said after about 20 minutes of hashing it out.

Max – “I’m being an idiot.”

Chad – “Buddy, I wish you wouldn’t say things like that.”

Max – “I’m a swear word.”

Chad – “What are you talking about?”

Max – “I’m a fucking idiot.”

Just pause and take that in for a second…

Are you a parent? Can you imagine? The person you brought into this world, who you love and protect with all your might, just said some of the harshest words ever. About himself.

My head fell back on the couch. I was devastated. I thought about the next hour and what might transpire the rest of the day. I had two options. On one hand, I could do what maybe most parents would do and give up to avoid more fighting, and let him spend the day vegging out. This would likely close the door on all skiing for a very long time, maybe indefinitely. I certainly didn’t want that. On the other hand, I could force him to go and force him to overcome his fear. And keep snow skiing as a family pastime.

I want so badly to be a good dad, make the right decisions, be loving, give Max the freedom to make his own choices, etc. If there were a guidebook, it would probably say “Wave the white flag. Pick a different battle tomorrow.” But autism doesn’t follow any guide or rule books. And so parenting through these circumstances is exponentially harder.

On the way home, I laid out his two choices and told him the ramifications of each choice. I set it up in a way where he could put all the information together and realize that going skiing was the better outcome overall. I gave him the freedom to make his own choice. I was sure that he would choose skiing. He didn’t. Total backfire.

We got home and walked in the house as Jamie was gearing up the family to go skiing. Max announced that he was staying home. Jamie stopped, looked at me, and said quietly, “No he’s not. We’re going skiing.”

I know that all parents face dilemmas like this all the time. This is nothing new. Three people. Three approaches. Three attitudes. Three styles. There were plenty of opportunities for things to go awry at this point. You add the short fuse of autism into the mix, and something might get broken.

I pulled Jamie aside and told her that I had laid it all out for him and given him the choice. To that, she quickly said, “OK, I’ll tell him.” The time clock had been triggered. The bomb would go off in a matter of seconds. Everyone run for cover.

Let me stop right here and note that Jamie in no way undermined what I had been doing. I didn’t feel threatened by her comment nor her following actions. I too was at a loss as I clearly thought (and hoped) he would choose skiing. I was doing what I felt needed to be done. It didn’t work in our favor. She stepped in and did what she felt needed to be done. And that’s perfectly fine with me.

Jamie walked into the room where Max was and gently said, “Hey bud, I know that you and dad talked and you are choosing to stay home. I just want to say that I’m going to make us all go skiing. Here are your ski pants. Put them on.”

At this point, I think I had taken shelter behind our Great Dane. Max would never hurt her. But to my surprise, he looked at Jamie for a few seconds, and quietly said, “OK.”

Wait. What?

Autism doesn’t follow the rules. And bottom line, if you’re a parent in our situation, don’t assume that you have to follow the rules either. I can think of several ways the entire morning could have gone differently. I can also think of several other ways we could have handled the way the morning did go. This day was weird all around. We broke a bunch of family rules with the way we handled this particular situation, both with Max, and between Jamie and me. It should have been disastrous.

But you know what? We went skiing, and it was awesome. It was just the three of us. Max had a blast, and on the chair lift rides, we even talked about how to overcome fear and ways to avoid the same thing happening again. He even told us that he doesn’t understand why he freaks out about the things he loves.

While a bunch of rules were broken, we learned a valuable lesson – autism doesn’t follow the rules. Only you know what is best for your child. And when you don’t know, maybe you’ll just get lucky. Maybe you’ll blow it, but you’ll learn. But the point is that there is no rule book with autism. What works for us, might not work for you. What works for us, also, might not work for us tomorrow. It’s a craps-shoot. But we take good notes along the way and remember that autism doesn’t follow any rules.

Chad Youngquist

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