About a month ago, a television reporter went to elementary school classrooms around these parts to tell us about “wiggle chairs.” The chairs helped first- and second-graders sit at their table and get their work done.
I recognized them instantly. When Sam was in elementary school, he went to the occupational therapy lab once a week at Texas Woman’s University. Students worked with him under the supervision of one of the professors. The students from that first semester (fall 1993) was incredibly sweet. The two students were so excited to be working with Sam (first, autism was rarer back then, and they were clearly helping him a lot) that they made him part of their project in another class, too. They built him a t-stool and gave it to him at the end of the semester.
When I first saw it, I couldn’t imagine how anyone could sit on it. We humans are bipeds. How a person can ride a unicycle or travel down the sidewalk on a pogo stick? Just watching makes me tilt slightly to one side.
Sam didn’t use the t-stool a lot, but I did from time to time, in front of television, for example. Your legs help turn the stool into a tripod. That was the point. You wobbled and wiggled your way to stability.
Of course, the concept went mainstream, although the wiggle chairs they are making for elementary school kids are a little better anchored. You could fall over while sitting on that t-stool if you didn’t pay attention (that’s the point). Most kids bounce. But sometimes they don’t.
This isn’t the first time a therapeutic tool like that has gone mainstream. For example, my former aerobics instructor marveled once during a lunch hour workout that many of the tools our class used (steps, balls, slides, rubber bands) were once physical therapy tools. We should pay close attention the next time one of us was injured and used something new in therapy, she said, joking that we could get rich turning it into a workout routine.
It’s a thing, y’all. Pay close attention to whatever techniques or tool special education teachers and therapists are using. Chances are it’s something cutting edge, and in a year or two, all the teachers will be doing it.
Peggy (noting the washer lid is open): Wait. The washer went off-balance?
Sam: I opened it before it started.
Peggy: I didn’t hear that. Did I miss it?
Sam: I can hear it when the motor sound starts refracting.
Peggy (face palm)
Peggy: “Have you seen this video of Miley Cyrus on the VMAs?”
Michael: “Mom, don’t watch that garbage.”
Autism Speaks ran a super cool top ten list this week.
I’ve re-arranged their list by topic. I think it’s more useful that way, but you can refer back to their order, too. (ASD means Autism Spectrum Disorder. Let’s all get used to the change of language again.)
Prenatal folic acid, taken in the weeks before and after a woman becomes pregnant, may reduce the risk of autism. Here’s the story.
High-quality early intervention for autism can do more than improve behaviors, it can improve brain function. Read more.
Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.
Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.
Researchers can detect presymptom markers of autism as early as 6 months – a discovery that may lead to earlier intervention to improve outcomes. Read more.
The first medicines for treating autism’s core symptoms are showing promise in early clinical trials. Read more.
Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention.Read more.
Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.
One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.
Other signs of hope
Investors and product developers will enthusiastically respond to a call to develop products and services to address the unmet needs of the autism community. Read more.
From kindergarten through 8th grade, Sam spent one afternoon a week in the clinic with occupational therapy students at Texas Woman’s University — usually two students would be working with him under the supervision of the professor in a clinical practicum. At the end the of the term, each student would plan a program for Sam and videotape it as their final project.
He pursued a wide range of activities in the clinic that helped him become more coordinated. By the time of this project — Sam is about 9 1/2 years old — he was on his way to following multi-step directions, interacting with people, staying on task with jobs that might otherwise make him uncomfortable.
We took cues at home from lots of these experiences. For example, Sam, Michael and Paige participated in 4H food events. It was no small victory in high school to help him build confidence using both the stove and the oven.
For entertainment value, this 11-plus-minute video is about on par with watching any home movie, but if you are looking for ideas to work with a child with autism, this is good stuff. Enjoy.
I hope the first essay about Susan Schneider’s The Science of Consequences — dealing with the ostrich effect — doesn’t turn out to be a spoiler for this one. I wasn’t reading the book for my day job, yet there were many cross-overs.
That’s always nice.
At the end of the book, Schneider shows how we might solve problems on a grand scale with consequences (global warming, overcoming prejudice) and, as I was reading that, it occurred to me that many parents of kids with autism — especially the young parents — don’t realize the power of consequences.
Ivar Lovaas had put together a program of consequences (they called it Early Intensive Behavioral Treatment) that raised the IQ of kids with autism, on average, by 20 points back in the 1980s, not long before Sam was first diagnosed. We helped bring his program to Sacramento, even though we didn’t understand it very well and Sam would never directly benefit from it.
Back then, we couldn’t see how learning to imitate, or learning to pick up a red block, or learning to talk in increasingly longer and more complex ways was going to help Sam in a substantive way. He had autism. We thought that this kind of work wasn’t a cure, it was a way to adapt. Why would any parent think that applied behavioral techniques could make substantive changes in the brain of their child with autism?
But, as I have seen and learned, they can.
Schneider doesn’t set out to show us that in the book. In fact, she doesn’t tackle autism until the final chapters and its quite a brief passage. But, by then, I understood what she was laying out — how consequences have shaped the world.
The book is a review of the scientific literature for the lay reader. Schneider helps us understand the concepts of reinforcers and the variety of behaviors they can shape, including complicated ones. She helps us understand how negative consequences aren’t always, and how positive consequences can be negative.
She shows us that genetics are affected by consequences, and almost in real time, not just through evolution. And while scientists have long known that an enriched, language-filled upbringing is best for young children, they have also determined that enrichment later in life can make up for a young life that missed out. What parent of a kid with autism wouldn’t find hope in that science?
I actually got more out of the chapter on “Thinking and Communicating” and its implications for autism, than I did on the autism section. To wit:
“Simply listening to language is clearly not enough to pick it up. Interactions — and the consequences that necessarily go with them — are critical. For example, a hearing child raised by deaf parents spent most of his time at home. The TV was kept on for him on the theory that this exposure to spoken language would suffice for his language development. By age three, he had readily learned the sign language that his parents used but could not understand or speak English. There had been no consequences for learning English, but there had been plenty for learning sign language.” (p. 151)
So, turn off the TV and create a rich environment for your child.
There are social elements in all language, and Schneider helps us see how that plays out. Requests, for example, benefit the speaker, while descriptors benefit the listener.
I know. Duh.
Bear with me.
When you are putting together a program to help a child with autism learn language, you have to be able to harness scores of facts like that, because as Schneider writes, “understanding what’s happening and why, and taking advantage of all the positive consequences available” (p. 241) is what you need to make that change. As she cautions us, “the basics seem like simple common sense but are not as easy to do as they sound.”
Just ask any parent of a kid with autism.
I don’t know about you, but I hated the fire alarms and fire drills when I was a kid. These days, the alarms are even louder and more grating. We weren’t going to get Sam through elementary school if he didn’t trust the adults to give him some hint of when the next fire drill would be.
Still, we wrote a social story to help him out. Below is another social story that Sam smiled when re-reading and remembering.
When Paige learned the topic, she told Sam that fire alarms in a college dorm in the middle of winter night in Iowa — because there was really a fire — are more hair-raising than the practice ones when we were all little kids. I agree. We got sent out into the snowbanks at 2 a.m. one January night in Rochester when I was in grad school. Not only scary, but widow-maker cold.
When the Fire Alarm Goes Off
Sometimes as I sit in a class I hear a buzzing alarm go off. The alarm means we are having a fire drill.
A fire drill gives students a chance to practice for a real fire. Usually there is not really a fire.
My teacher waits for me to line up with my class at the door. I walk quietly down the hall with my class.
I walk outside and wait until my teacher says that we can go back inside.
The fire drill is over when my teacher leads us back inside.
Paige and I were on the hunt for some drawings she did as a child and stumbled upon loads of other fun stuff. I saved a lot of the kids’ work from elementary school. I tried to limit it to their journals and things they created in art class and it still ended up filling several large boxes that either sit on the top shelf of my closet or slide under the bed.
I also saved some of the things that meant a lot to Sam in those years — for example, his social stories.
We were fortunate that social stories came out when Sam was in primary school. We bought a whole binder full of them and wrote some of our own. We made them into little books and covered them with construction paper. Some of them have stickers on them. It meant something back then, but I don’t remember what. I think it’s a hoot, though, that many of them are a cartoon of a head of broccoli running with a fork and knife from Albertsons, since that’s where he works now.
When family or friends would ask what a social story did, I told them that Sam had trouble picking up social cues. But if we detailed them in a story, he knew to watch for them and then he would know what to do next.
From a stack of about 20 that I’d saved, Sam pulled out this one about the trains first. Like many small Texas towns, Argyle grew up around what is now the BNSF line. When we first moved here from California, we moved to a small house by the train tracks. Sam was five then. And while I don’t remember this very well, he must have been easily distracted by the trains and it was becoming a problem from him attending to important tasks.
Sam said he remembered the stories. And, oh, the smile on his face went from ear to ear as he read it aloud.
“About the Trains”
We live at the chicken house. Trains go by our house all day and all night.
I like to watch the trains. First, I can hear the train rumbling in the distance. As the train nears, I can hear its whistle blow.
Then the red warning lights come on. The engines go by. I can count the engines. The cars come next. I like to see the different kinds of cars.
When the train is through the crossing, the red lights go off and the crossing arms go up.
Sometimes I’m too busy to watch the train. I have other things to do. That’s ok. I can always watch the next train go by.
I’m fond of telling my kids that their grandkids will be in awe of their childhood experiences — all of what a computer couldn’t do, how crude a smartphone was, how brutal medical practices seemed (that last idea comes courtesy of Star Trek IV The Voyage Home).
I tried to apply that perspective to all kinds of situations in raising Sam. Being aware that you are in pioneering territory is helpful. Lots of people have come before us to do the Lewis and Clark equivalent of defining the landscape of accommodating someone with a disability and laying the groundwork with the public policy that opened up this new frontier of living with a disability.
I try to remember this journey as the Wolfe family Conestoga wagon settling the autism frontier. Nearly every day something new, something without precedent. Sometimes it’s exhilarating. Sometimes the risks are clear and present. And always, always, exhausting.
The pioneering days of speech therapy are behind us. If someone in the discipline was interested in a exit interview, I have things to say about what worked and what didn’t. I would imagine Sam does, too.
Never was that more clear than when I read the following line in Diane Ackerman’s book, One Hundred Names for Love (a book about her husband’s stroke and continuing recovery from aphasia, which has some interesting similarities to Sam’s speech impairment). She describes a scene where her husband, Paul West, also an imaginative writer, struggles with fill-in-the-blank worksheets meant to help him regain his ability to talk.
“Choosing the correct answer could be as tough as herding cats. But, like most people, I did know the accepted answer. Selecting it, I had to ignore all other answers that spring to mind or were truer to my experience.”
Correct is not the same as accepted.
Furthermore, we cannot ascribe too much meaning when a client cannot come up with the accepted answer.
I tried to explain that in my book, when I relayed Sam’s experience of confronting vocabulary cards with images of things he’d never seen before. Diane absolutely knocked it out of the park, explaining the inherent social context of many speech exercises.
I think it could be a much bigger problem than those working in speech therapy might realize.
Throughout the book she describes “deliciously ambiguious words” and takes us on verbal joy rides with them. She sprinkles phrases without context and then gives us a fun house worth of perspectives to show how much we depend on context for meaning.
I wish I knew that two decades ago. I can only imagine how much better his speech therapy would have been. I wish I knew that a month ago when we were hit again with this problem.
I wish I knew these things I never knew I was waiting for.
Today’s installment is from a CNN blog entry on a review of studies, determining whether drugs — pretty much of any kind — help treat autism “core” symptoms.
And the verdict? They don’t.
Not secretin, not antipsychotic drugs, not serotonin-reuptake inhibitors (SRIs), not antidepressants, not stimulants or any other medication for hyperactivity.
We never agreed to any kind of medication for Sam, even when it was suggested when he was struggling with some anxiety during his first year of college. We dusted off some relaxation techniques and he worked through it. Life is hard enough for him and kids like him without trying to do it doped up.
The only thing that helps core symptoms (repetitive behaviors, communication and socialization) is applied behavioral therapy, and the earlier the better.
And I’m with Dr. Margaret Bauman — some of those repetitive behaviors have a purpose. Pay close attention before you try to extinguish or re-direct them. You may be sorry you tried.