A Mind of My Own
Posted by Gail | Filed under Autism
Chapter 4: A Matter of Routine (Part 3)
Routine is extremely important to Malcolm, as it is to many people with Asperger’s. He brushes his teeth in the morning, takes his bath at night and eats his after-school snack at exactly the same time every day. There is so little variation that if I suggest he go have his bath “now,” I’m reminded that he still has three minutes until bath time. While this routine can be very useful (we don’t fight over bedtime) it can also be like walking around in concrete shoes.
At 10 and 11, Malcolm used to love to eat cereal when he got home from school. He’d take out his bucket of cereal, the cup he used to scoop the cereal, the milk, a spoon, a bowl and a red, checkered cloth that he would cover the bowl with when he was done. (He watched his father cover dishes in the summer to keep the bugs out.) One day Malcolm was in a tizzy. He had his bowl, his cup, his spoon, his cereal, his milk… but the red, checkered cloths were all missing (probably in the laundry) and he was stuck. He couldn’t have cereal if he didn’t have a red, checkered cloth to put over his bowl when he was finished. I suggested another type of cloth. No. He proceeded to show me how everything was lined up just so on the counter, pointing out the hole where the red, checkered cloth should be. Luckily, I found one and thereafter all the red, checkered cloths were designated Malcolm’s cereal cloths and kept in a new drawer so he wouldn’t be without one again.
Change a routine Malcolm had become used to and he would go into a tailspin. And it didn’t take long for him to fixate on a particular way of doing things. If you could catch him before the routine solidified, he could adapt. And if we talked about the change before hand, we could minimize his discomfort, so I became adept at writing social stories to prepare Malcolm for new things or for departures from the norm.
Since I had been warned how important routine was to him when he was diagnosed, and because I had no desire to watch him melt down whenever we needed to change something, I have been very purposeful about mixing up his routines. Yes, there were some I didn’t mess with, particularly once they had solidified, but there were things I liked to stir up before they became concrete routines. My idea was to make change acceptable while leaving enough routine in his life to keep him comfortable.
So while the other children were dismissed at the outside door, I would sometimes pick Malcolm up at the classroom door, or send Alex to get him, or ask a friend of mine to get him and bring him to be on the playground. Each of these variations became acceptable over time, and then the variation itself wasn’t a problem anymore. Yes, it was hard to make him uncomfortable on purpose, but it was worth it to see him become more flexible and adept at dealing with change.
I periodically mixed up the routine at home too, insisting he have his bath a little later, offering him a slightly later bedtime (which he simply couldn’t resist) or serving meals at different times. He takes most of this in stride now, and is far less rigid than he would have been if we’d done everything his way. But some signs of his functional fixedness persist. Of course I kept on screwing with his routines on purpose to off-set his unwavering adherence. I’d put his dishes in a different position on the dinner table. I’d move stuff after he’d carefully lined it up. He said, “You are such a bug,” and rearranged it the way he wanted it. I had to know when to stop so we didn’t topple over the edge. At 16 he still uses specific dishes for specific meals: cereal can’t go in a soup bowl. And he still lines things up on the table when he’s eating.
Any unexpected change would completely throw him. When he was in grade three, he went to the library during math period to work on his grade six math with the special education resource who also happened to be the librarian. Catherine functioned mostly as a monitor for Malcolm since I programmed his math from home and sent him each day with his work. On one day, however, things changed without Malcolm’s knowledge. When he arrived at the library, which was usually empty during his period there, a bunch of kindergartners were arrayed around Catherine’s chair while she read to them. He peeked in the door. Something was different. He couldn’t go in. So he headed back down the hall and around the corner where he stopped. And that’s where the school’s child and youth care worker came upon him. When Natalie asked what he was doing standing in the hall, he replied, “I’m stuck.” He was. He couldn’t go in the library because things were different, but he couldn’t go back to his classroom because he didn’t belong there in that period either, so he was stuck in the hall. Happily, Natalie knew just what to do and filled me in so I could then go over a procedure for Malcolm to follow should a similar situation occur again.
It’s all about figuring out the “what-ifs” and preparing Malcolm for them. Some are obvious. What if I don’t get to school on time to pick you up? Go to the office and have Joanne call me. Maybe I’m stuck in traffic. Maybe I fell asleep on the couch. Maybe I’m just around the corner. Wait for me in the office. I’ll pick you up there. Some are less obvious: What if you get to the library that’s usually empty and its full of people and you can’t get Mrs. Shannahan’s attention? Hmmm.
The convenience of the cell phone took a huge weight of my back in terms of being able to connect with Malcolm if something had to change. Knowing I could text him, or that he could text me, meant I was far less stressed out about hitting the mark on pick-ups and drop-offs. I’m a punctual puss anyway, but this just gave me some breathing room. And it means I don’t have to leave him standing wondering what the hell happened if the routine must change.
Okay, there’s one more part to this chapter and I’ll put it up next Friday. It deals with Social Stories, how to write them and how to use them. Do you want me to continue? (100 yeses if you do)
June 1, 2012 at 2:38 pm
Yes please!
June 1, 2012 at 2:39 pm
Yes:) You are an amazing mom.
June 1, 2012 at 3:00 pm
Yea please!!!!
June 1, 2012 at 3:01 pm
Yes, please!
June 1, 2012 at 3:17 pm
Yes, please continue with the stories. I recently had a teacher ask if my 23 year old son had been tested for Asperger’s (he’s at an alternative highschool working through a course at a time).
We went through a lot of tests in Grade 6 but not that one – he is dyslexic and the regular school system really didn’t work for him.
I’ve always felt that he required far more structure in his life than I was able to provide so he may have some of those traits or a mild OCD.
June 1, 2012 at 3:58 pm
Yes, yes, yes! I’m really enjoying these.
June 1, 2012 at 4:42 pm
I think the Yes’ have it
June 1, 2012 at 4:45 pm
Yes
June 1, 2012 at 5:30 pm
Yes, yes, yes, yes, yes, yes, yes….. etc all the way to 100!
June 1, 2012 at 5:32 pm
YES please!!
June 1, 2012 at 5:34 pm
YES!
I was worried about being mean(wasn’t my intention) when I tried some similar routine changing techniques with my autistic brother. Just to get him a bit more comfy when change (none of us could control) eventually comes into play.
I really love this series Gail, your son is very lucky to have you in his life.
June 1, 2012 at 6:45 pm
Yes, continue with your story Gail. I just learned something here as I never knew about different stages or levels of Autism and never heard of Aspergers Disease.. You are doing great with your son and are an inspiration to other moms who face the same challenges.
June 1, 2012 at 10:40 pm
Yes! Please!
June 2, 2012 at 11:46 am
Please post more. My Son has aspergers and learning disability too. Always good to hear how other families are coping. THanks
June 2, 2012 at 10:20 pm
YES!!!!!
June 3, 2012 at 12:20 am
Yes
June 3, 2012 at 12:50 am
Yes, I don’t know what a social story is and would like to learn.
June 3, 2012 at 1:20 am
Yes please.
June 3, 2012 at 7:38 am
Yes!
June 3, 2012 at 7:40 am
yes!
June 3, 2012 at 10:20 am
Yes Please continue to tell us your story
June 3, 2012 at 3:25 pm
yes!
June 3, 2012 at 5:42 pm
Yes, please!
June 3, 2012 at 7:43 pm
Yes!
June 3, 2012 at 7:52 pm
yes please!!
June 3, 2012 at 9:56 pm
Yes!
June 3, 2012 at 11:43 pm
yes please !!
June 4, 2012 at 8:20 am
Yes Please
June 4, 2012 at 8:45 am
Please continue. I look forward to your Friday blog every week.
June 4, 2012 at 11:00 am
Read this article today and found it interesting, I thought I would share: What’s Different About The Brains Of People With Autism?, on NPR.org:
http://www.npr.org/blogs/health/2012/06/04/154175007/whats-different-about-the-brains-of-people-with-autism?ft=1&f=1001
June 4, 2012 at 3:28 pm
Yes Please
June 4, 2012 at 9:27 pm
Yes, please!
June 8, 2012 at 12:17 am
Yes, please! My great nephew may have Asperger’s and any good ideas are greatly appreciated. You are obviously doing an excellent job with your special fellow!
June 9, 2012 at 10:55 am
Yes! definitely!
June 30, 2012 at 8:33 pm
Yes, this is wonderfully helpful.