A Mind of My Own
Posted by Gail | Filed under Autism
Chapter 4: A Matter of Routine (Part 4)
If you leave an Asperger’s child to deal with things himself, the world won’t come to an end. Well, your world won’t. But his will, dozens of times, in a million different ways. His stress levels will rise. His stims (self-stimulation – the things he does to cope with stress like rocking or chewing) will be more pronounced. And, ultimately, his behaviour will deteriorate.
That’s not to say you’ll be able to think of everything. No one could. But whatever you can prepare an Asperger’s child for will help to alleviate that sense of not knowing what going on.
One of the best ways of prepping an Asperger’s child, particularly when they are younger, is by using social stories. I’ve found a lot of people know what they are, but very few people know how to write them or use them effectively. A social story is a roadmap that explains something. Here’s an example of a part of a social story for the first day of school.
Malcolm is going to school on Monday, September 7. It is his first day of school. Mommy and Malcolm will get up earlier. They will get up at 7:00 a.m. Mommy will make Malcolm’s favourite breakfast. Then Malcolm will put on his black pants, his red shirt, and his black socks. Malcolm will brush his teeth and Mommy will brush Malcolm’s hair. Malcolm and Mommy will leave the house at 8:30 to walk to school. School starts at 9:00. Malcolm will meet his new teacher, Mrs. Robins, and all the children in his class. He’ll have some fun and he’ll be very tired when he comes home.
In my experience, good social stories have seven basic characteristics:
- They are complete. They have lots of detail, and don’t assume the child will fill in the blanks. They are positive, creating the mindset you want the child to carry through the event. Most importantly, they tell the truth. If there are things that will be negative, you tell the truth so the child is prepared.
When we get to the dentist’s office, it is going to smell strange. There are also some strange sounds and if Malcolm asks Mommy what they are, Mommy will show him.
- They speak in the child’s language. The words are simple and easy to understand. Since Malcolm didn’t understand pronouns, I minimized their use in our early social stories.
- They set expectations. If Malcolm knows he is expected to wear his black pants and red shirt, he’ll be much more likely to comply, eliminating a potential area of conflict when we come to the actual morning and its inherent stress.
- They are in order. If you mix up the order on the morning of the first day of school, you have effectively negated the social story and you will be sorry!
- They are repeated. Review a social story with your child several times before the day of the event to familiarize your child with what will happen. The more often you read the social story, the more real you make the events, the less stress later on.
- They are of a reasonable length. I’d never do a story more than a couple of paragraphs long at once. If you have to break events into two or three stories, so be it. Too much at once will be overwhelming. Perhaps, if the event is big enough (flying to another city to go to a family party, for example) you would write four or five stories and after the child becomes familiar with each of them you could combine them into a single story.
- They are cooperative. You might have to do the first two or three for your child while he watches, but eventually you should be writing them together so your child is involved and learns the process. Always thrusting a story at a kid is a sure way to turn him off. Getting him involved by using icons, pet phrases, or by having him write some of the words involves him in the process in a way that makes the story belong to him.
You don’t have to write a social story for everything you do. Sometimes a list will suffice. So, for a day of shopping, you might write:
Have breakfast at 8:30
Dress, brush teeth at 9:00
In the car at 9: 10
To the supermarket – complete shopping list
Stop for lunch at McBunnies at 12:00
To the post office to mail the letters
To the dry cleaners to pick up the clean clothes
Home – about 3:30
While I tried my best to have Malcolm prepared so that his stress levels wouldn’t go way up, I also liked to mix things up from time to time so that started to get used to the unpredictability of life. Whenever he seemingly in a groove and feeling happy, I’d try a change in the plan with a prior warning:
“Malcolm, I’m a little ahead of schedule today. How about if we go to the post office before lunch, then we’ll have one less thing to do after? Would that be okay?”
If he said yes, we were off to the races. If he said he wanted to go for lunch first, we stuck to the plan. He eventually got used to me mixing things up a bit and learned to give. And then there was the day that the caca hit the fan and the plan went out the window. “Sorry, sweetie,” I said. “Things have gotten all mixed up, but if you cope with this and are a good boy, I’ll let you have an extra 20 minutes on the computer when we get home.” He coped. He got his 20 minutes and we both learned that flexibility comes with a price that it is sometimes worth paying. Now, if we are heading out for a day of shopping, which Malcolm absolutely abhors, I offer him 5 minutes of extra computer time for every half-hour we’re out. He keeps count of the time he’s earning and is reasonably patient. I don’t have a kid constantly whining, “When are we going home?” A win all around.
June 8, 2012 at 8:03 am
You know, my daughter is diagnosed with ADD and is on medication for it, but more and more, reading about your’s and Malcolm’s needs and coping strategies, I wonder if we didn’t get the complete diagnosis. I have to prepare Miss Thing for everything and give her expectations for everything as well, and if things get mixed up, we get a meltdown. Iiiiinteresting. I will be following these posts very closely to learn new techniques I never thought of. She loves to write, so these social stories are going to become part of our toolbox for sure!
June 8, 2012 at 8:46 am
Gail, thank you for letting us know one of the techniques you have successfully used to help Malcolm (and you) through the day. I think it’s a great technique for Any child or adult going into a new situation.
I use the “social story” with my clients when we are getting ready to look at offers on their property. I tell them the agent will knock on the door and I will let them in. I will invite them to sit down. You will offer them a glass of water. This will make them feel more comfortable. We will all sit down. I will thank them for bringing us an offer and they will hand me the folder. I will take the documents out of the folder and give everyone at the table a copy etc.
I present offers all the time, but for clients selling a home is stressful and the offer process can be intimidating and mysterious. Laying out ahead of time Exactly the sequence of events, really helps them feel everything is under control.
90% of offer presentations go exactly as I have written and I would say that the “routine” we follow as agents helps clients feel comfortable and it also helps the agents feel comfortable too.
We think of routines as Kids Stuff, but they’re not, and neither are social stories. They are road maps to your day. Who doesn’t need a map now and again.
June 8, 2012 at 9:42 am
@Sylvia, as a Realtor also, I would never have thought to do that. Unfortunately where I live majority of offers are faxed so I don’t even get the opportunity to have that situation. But that is a neat idea in explaining to them what happens….buyers too I can see I do it sometimes I just never thought it was a social story lol.
June 8, 2012 at 10:34 am
social stories are a brilliant tool for all – children and adults. life changes so quickly and we all can very easily find ourselves in new situations we’ve not had to deal with before. a brief run down would be very calming even if it’s a commonplace event. if it’s the first time for you it is an unknown.
my son is starting school in Sept and this is definitely an idea I will use to prepare him. thank you.
June 8, 2012 at 10:58 am
@Sylvia, great example of adults using social stories
June 8, 2012 at 11:13 am
I can see the benefit of these…I’ve done it with myself for various situations, going over step by step in my head how something will go. It makes me feel prepared, I guess. I didn’t realize other people did it too, but I can see how it’s useful.
June 8, 2012 at 12:04 pm
Good advice again
June 8, 2012 at 12:49 pm
I grew up in an ADD household (3 siblings and 1 parent diagnosed) and spent a lot of time working with special needs families during a past job and I have never heard of these social stories until now.
Very interesting, thanks so much for the insight!
June 8, 2012 at 3:45 pm
I used to do these too, when calling my friends as a child – but I did it in more of a flow-chart presentation. When would I call, what would I do if the line was busy (we had a party line back then), what would I say to my friend, what if she didn’t want to talk/play/have a sleepover etc. Very helpful to me even when I was nervous.
June 9, 2012 at 12:27 am
These social stories sound like an excellent approach for anyone having trouble dealing with change. This is very helpful, thank you.
June 9, 2012 at 6:49 am
Thanks for sharing this Gail. I just discovered you and want to read more. My father is 80 now and if tested would receive a diagnosis of Aspergers. So having already lived through it, I wasn’t surprised when my son was diagnosed early on – he’s now 19. My father is a successful person, but has several quirks & splinters that drive people crazy. He found a loving woman and has been married to my mom for 52 years. I know my son will be equally as successful if he continues to surround himself with people who know and love him like we do.
ps… we make lists for everything! Takes away fear of the unknown.
June 9, 2012 at 9:24 am
I think these coping strategies are useful for every child. Some parents expect their children to behave well in any situation without explaining anything.
With my daughter, our first child, we explained every thing. It was a lot like social stories. With my son, our second child, we didn’t explain as much, maybe because we were pressed by time, maybe because we thought he would know by some kind of mind-reading phenomema… At one point, we were discussing how he was not as adaptable as his sister and realised that WE were the ones who weren’t teaching him the same things! Now, although they’re both very different, explaining things to my son as we had to my daughter is the best realization we had for a peaceful family life!
With time, the explanations are getting less detailed. Sometimes, all we have to say is something that goes like: “we’re going to X place, we’ll do just like the last time we came” or “we’ll do the same thing as when we go to Y place”.
I really enjoy reading Gail’s posts on Malcom’s story.
June 10, 2012 at 7:59 am
Your coping stratgeries are very useful and I have used them myself with my dd and it does work. Thank you for sharing this story with us Gail. We have learned so much and are very grateful.
June 10, 2012 at 9:54 pm
Gail, love the stories with such valuable information…please continue! Thanks.