SB was diagnosed with autism when he was 20 months old. Only a few months later, we started him in ABA therapy at home and also in a special education preschool program that is based in ABA. I feel that both preschool and therapy together had a huge impact on the amazing progress SB made in his early years.
SB’s delays were very considerable, so there were many different areas that needed work. His teachers and therapists tackled things like noncompliant and tantrum behaviors, receptive language, expressive language, fine motor skills, and countless other things. All of these things were important, and his school and therapy schedule kept him very busy. By the time he was 3, my husband and I were thrilled with the significant progress he had made in all of these areas. But as his Mommy, not his therapist, there were some areas of his development that also seemed important to me that just weren’t being targeted. The most obvious one was that my son did not know how to play with toys.
I have tried to explain this to many of my friends who have typical children, and they usually look at me like I am nuts. “What do you mean? He doesn’t know how to play with toys? All kids know how to play with toys!” No, they really don’t. When SB was 17 months old, and not yet diagnosed, he really had no interest in most of his toys. I was starting to wonder when that was going to happen. Instead of using his toys, one of his favorite ways to pass the time was to repeatedly open and close the bathroom door. He didn’t know how to work the doorknob, but he would violently throw the door until it hit the frame without latching, and then violently throw it open again. Over and over and over. He actually broke 2 hinges on the door doing this. Another favorite pastime was to take the welcome mat by the front door and flip it over, and then flip it back again. He could do either of these things for hours if we let him. He had a few toys that he liked, but only the ones which had buttons that caused a light and sound when pushed. He would hold these toys very close to his face and push the buttons repeatedly, also for unusually long periods of time. The one exception was a yellow toy taxi cab with a happy, smiling face on it. We could get him to interact with us occasionally by pushing the taxi back and forth in our kitchen. Because he had loving parents and grandparents who wanted to spoil him, SB already had quite an arsenal of appropriate toys. Blocks, balls, cars and trucks, puzzles, and pretty much any toy you can imagine. But they mostly collected dust, waiting to be played with while their owner turned over the welcome mat for the 8000th time. (I should mention that I went through a terrible stage of guilt when I learned that SB was not “playing by himself” when I let him open and close a door all afternoon, but was in fact participating in behaviors that were actually hindering his development. What a terrible mother I must be, letting him do these weird, repetitive things all day! But I covered plenty of guilt in last week’s post, so I’ll move on.)
During this period, we went to a child’s birthday party at someone’s house, and I was lamenting to a friend how sad it made me that SB didn’t understand how to play with toys. She looked into the playroom where a dozen or so children were playing happily. “What are you talking about?” she exclaimed. “He’s playing with the pretend kitchen right now!” At a casual glance, it did look that way. A few girls were dressing some princess dolls, a few boys were playing with cars, and SB was playing in the pretend kitchen. But I knew what was really happening, because I watched him longer than anyone else did. What he was actually doing was this: He went to the microwave in the pretend kitchen, and opened the door. Then he closed it. Then he opened the microwave door. Then he closed it. Then he opened the microwave door. Then he closed it. And do you know what he did after that? That’s right – he opened the microwave door, and then he closed it. He was not pretending to cook chicken nuggets. He was not preparing lunch for his friends. He was not even being silly and pretending to cook the toy cars. He was just opening the microwave door, and then closing it.
When SB was doing these repetitive things, he was not playing. In the autism world, this is called stimming, which is an abbreviated way to say “participating in self-stimulatory behaviors.” Just like the word “smurf,” the word “stim” can be used as just about any part of speech you want. Noun – “That girl has a lot of vocal stims.” Verb – “He is stimming with his toys a lot today.” Adjective – “We need to try to curb some of her stimmy behaviors.” A stim is simply any repetitive behavior. Some common stimming behaviors in autistic people are rocking back and forth, making vocal sounds, and moving objects past their eyes, but there are an infinite number of repetitive behaviors a person can use to stim. This is actually something that we all do. Do you know anyone who twirls their hair, bites their nails, chews on a pencil, or bounces their leg? They are stimming. The difference between a typical person and a person with autism is that the autistic person can get so absorbed in the stim and can get so much gratification from it that it drowns out the rest of the world, being more satisfying than contact with other people. Also, an autistic person does not understand when it is socially appropriate to stim, and when it is not. I could write an entire blog entry just about stimming. In fact, I probably will someday. But for now, I’m going to get back to toys.
Our public school program here in Fairfax County has a lot of great resources. Every once in a while, the special education teachers will hold free lectures for parents on a variety of topics. When SB was 3 1/2, I noticed one of these upcoming lectures was about the use of toys, and I knew I had to check it out. The seminar was a good one, and it gave me a lot of ideas about how to teach SB to use toys. The first suggestion was to have the child sit at a table for your toy-teaching session, as though it was time to do school work. This made sense to me, because I knew that following SB around the room with different toys and saying, “Hey! Look at this! Isn’t this cool? See what it does?” had absolutely no impact on him at all. It was like I wasn’t even there. The next suggestion was to use the same principles of ABA therapy. This meant to demand a simple, manageable task from the child, and then provide the child with a reward when the task was accomplished. This also made sense, because I had seen his teachers and therapists doing this with him for over a year. And the final suggestion was to go back to the basics. It doesn’t matter if your child is 3 or 4 or 7. If they don’t understand how to play with basic baby toys, they certainly can’t understand how to play with age-appropriate toys. They won’t be able to do developmental step 5 if they can’t do developmental step 1. Although I felt sad that I was going to have to pull the baby toys back out of storage, this made sense to me as well. The instructor suggested that we start with a 20 minute session and slowly build up to a longer amount of time. This is when I rudely laughed at loud! The looks I got from around the room were a mixture of contempt at my rudeness and nodding with understanding. I told the instructor that I had not been able to get my child to play appropriately with toys for one minute, let alone 20. She told me I should start wherever my child needed to start. Fair enough.
So I decided to set up a time each afternoon when SB and I would work on nothing but playing with toys, and I called it “Activity Time.” Before starting, I needed to come up with a good reward, or as they call it in ABA, a strong reinforcer. Since one of SB’s earliest words was “bubble,” (well, it sounded more like “buh-buh”) I bought a battery-powered bubble machine, hoping that it would do the trick. The toys I chose to begin with were a Fisher Price shape sorter with 4 different shapes (for ages 6 months – 3 years), a Fisher Price ring stacker with 4 rings (6 months – 2 years), and a wooden puzzle with 3 chunky pieces that had handles on each piece (1 – 3 years.) On the first day, I told SB to sit at the table with me, and I set a kitchen timer for 2 minutes. I put the shape sorter in front of him, and used the circle to demonstrate how to play with it. (The circle is the easiest shape, because there is no need for it to be oriented a certain way to fit into the hole.) Using the simplest language possible, I said “put in,” and then put the circle in the hole. He was, of course, not impressed. I then put the circle in front of him and gave him the same direction: “Put in.” Not surprisingly, he did nothing. I gave him the direction again, and again he did nothing. Now it was time for what is called “hand over hand,” which means that I placed my hand on top of his hand and forced it to follow my command. Together we picked up the circle and put it in the shape sorter as I again said “put in.” Even though he didn’t really accomplish the task on his own, it was time for the reward. I yelled and cheered! “You did it! Good job!” And then I turned on the bubble machine for 10 seconds. Finally, something impressed him. “Buh-buhs! Buh-buhs!” he shouted. He clearly wanted more. I went through this ritual 4 or 5 times using hand over hand. (I wish I had kept notes when I was doing this, so I could remember the details more clearly.) And finally, one of the times I instructed him to “put in,” he did it on his own. Now it was time for unabashed clapping and cheering, and 20 seconds of the bubble machine. “Hooray! Hooray! Hooray!” I shouted. He grinned at me and laughed at the bubbles. And then, the timer went off. We were only at the table for 2 minutes, but we had a successful moment, and that meant everything. I had promised him a Thomas the Train video when the timer went off, so he excitedly ran to the den to watch his show. Yes, I gave him a 30 minute reward for 2 minutes of work. You have to start somewhere. As my husband set up the DVD in the player, I slumped over at the table. I was exhausted! How could 2 minutes of work leave me feeling so spent?
Over the next year, I was able to increase the time we spent at the table to 15 minutes. More importantly, I continuously rotated the toys that I used. When SB demonstrated that he could use a certain toy appropriately and with ease, I put it back into his play area and pulled out a different, more advanced toy. It usually took about 1 – 2 months for him to get this proficient and independent on each toy. Occasionally I would introduce a toy that just did not seem to interest him, no matter how many times I tried. I decided that he was allowed to have a few toys he didn’t care for, and would move on to something else. Believe it or not, this process actually worked to teach him how to play with toys! During play time, he started to choose toys that he had learned to use in “Activity Time” instead of choosing repetitive activities, at least for small periods of time each day. And he would not use these toys in a stimmy way, but would use them correctly. Don’t get me wrong, he still spent plenty of his free time stimming, but slowly we began to see him playing with toys for more and more of his day. It happened very gradually, but it did happen.
I am proud of how this process played out. But before I toot my own horn too loudly, I must admit that when I started, the hardest work had already been done. Getting a withdrawn, autistic toddler to simply sit in a chair and follow a direction is more challenging than you can possibly imagine. Instead of describing how this went for SB, I thought I would quote an excerpt from the book Let Me Hear Your Voice by Catherine Maurice, because she tells it better than I could. In this passage, her 2-year-old daughter Anne-Marie is having her first ABA session with her therapist, Bridget. It was 1988, and ABA was not a standard therapy for autistic children the way it is now, especially not for children this young.
I led Anne-Marie into the bedroom for her first session with Bridget. I was very nervous. An assault, yes. A radical approach, OK. But by me. Not by some stranger. Not with this “behavior modification” business.
Anne-Marie was whimpering and crying already. Bridget was very serious. She was scaring me. Unlike Robin, (the speech therapist) she did not try to woo Anne-Marie and charm her with fun bubbles and laughing peek-a-boo games. She had work to do. About her there was an urgent sense of time speeding by. We had to get going. No time for chitchat or hand-holding sessions with Mother. There was not a minute to be wasted.
On the table she placed the reinforcers: apple juice, goldfish crackers, broken bits of chocolate cookie. She set out her notebook and her pens. She took off her watch and laid it face up on the table in front of her. She placed two chairs – one for her, one for Anne-Marie – close together, facing each other.
As soon as Bridget placed Anne-Marie in the opposite chair the crying broke out in earnest. Anne-Marie tried to get out of the chair; Bridget kept placing her firmly back in. She collapsed on the floor; Bridget picked her up and put her back in the chair. She tried to put her hands in front of her face; Bridget took them down and held them in her lap.
Anne-Marie was terribly fearful and distraught. She turned and looked directly at me, for the first time in weeks. Her mouth was trembling.
I was cold and clammy with tension. Was this right? Was I doing the right thing? But I had wanted an assault. Hadn’t I decided that we were going to “drag” Anne-Marie out of autism? Oh, God, what did I want?
It went against everything I had ever thought about child-rearing to physically force a child against her will, especially one who seemed not defiant, but terror-stricken. What kind of message was I sending to Anne-Marie? She was looking at me for help. How could I refuse? I let out a long breath and held myself back, by force of all the reason I could muster, from rescuing her.
The first program was a simple one: “Look at me.”
Bridget said it ten times in a row, holding a reinforcer at eye level, putting her other hand under Anne-Marie’s chin to lift her head up. Each of the “discrete trials” was to be given a mark in the notebook. A plus if Anne-Marie looked spontaneously, a minus if she didn’t look at all, and a “plus with prompt” if she looked with the physical promptings and the food reinforcers. I kept pacing in and out of the room. Staying there and watching was too hard, staying outside was too hard. I couldn’t stand seeing Anne-Marie so upset and not being able to pick her up. But I had made a pact with myself to give this therapy a try, and if I was going to give it a try I had to at least let Bridget finish the session.
Bridget seemed completely unfazed by Anne-Marie’s sobbing. How could she be so calm? She must not have a heart. She just kept prompting Anne-Marie through the trials, as though all this terror and distress were not happening. After each trial of “Look at me,” she offered Anne-Marie a goldfish, and praised her. “Good looking, Anne-Marie!” or “I like that good looking!” Anne-Marie refused to accept the reinforcer. Bridget wasn’t bothered by that rejection, either, but still offered her food and praise, even though it was Bridget who was prompting the looking, not Anne-Marie doing it voluntarily.
“Poor child,” said Patsy (the nanny). Anne-Marie had been sobbing for close to an hour.
“I know, Patsy. But we have to…there’s nothing else…Bridget’s not hurting her; she’s just making her sit in the chair…”
Yes, it felt exactly like that. For months.
When I started doing Activity Time, SB already had a year and a half of ABA under his belt. He had already been “broken in.” He was used to sitting at a table and being given a direction to follow. In fact, it was the only place he was willing to try new things. The other bonus is that doing Activity Time consistently for several years led to a smooth transition to homework when he got to school. Yes, they assign homework in kindergarten these days! Getting him to cooperate when the assignment is challenging continues to be hard, even now in first grade. But getting him to come to the table willingly to start homework is usually not a problem.
The one area where I feel I never achieved the success I had hoped is pretending. Pretending is very hard for kids with autism, because their minds are so literal. I once sat at the table with SB and some plastic fruit and tried to get him to pretend to eat it. I held an apple to my mouth and said, “Oh, yummy, yummy! This apple is so tasty! Yum yum yum yum yum!” He looked at me like I was nuts, and even though he didn’t have the language yet to say it, I could read in his face what he was thinking: “What the hell are you doing, Mommy? That’s not an apple. That’s a piece of plastic.” One of the things I learned in that seminar was the difference between open-ended activities and close-ended activities. A close-ended activity is something that has a very definite ending, like a puzzle or a board game. There is no question when the activity is finished. SB got very good at these. An open-ended activity has no clear goal or ending, such as playing house, or pirates, or any other pretend game. I tried many different ways to try to get SB to enjoy open-ended activities, but never really had a lot of success. I finally decided that the most important thing was to get him to use his free time using toys appropriately instead of stimming, and that if he never learned to pretend, well, so what? There is nothing wrong with doing jigsaw puzzles with your free time. Years later, when his brother got older, they started to create pretend games together. Weird games, but pretend games nonetheless. The first time they did this I found them in SB’s bedroom, where he has 2 closets with metal folding doors. They were going in and out of the closets, pretending that they were entering and exiting elevators in some large skyscraper, and announcing what floor they had arrived on each time they exited. A little strange, but also kind of cute. Soon after that, they used magnetic letters to label the closets “men” and “women,” and pretended to use the closets as public restrooms. I decided that this was perfectly fine, as long as they weren’t actually peeing in the closets.
A few months after I started Activity Time, I told SB’s ABA therapist about what I was doing, excited about the progress I felt I had seen. He was completely appalled! “What!?!?!” he exclaimed. “You’re not taking any DATA?!?!?!” No, I had not been taking data. I had kind of been winging it. He made it very clear that he did not approve of my methods, and did not support what I had been doing. Since I felt I had seen success, I continued my procedures without his blessing. (For a number of different reasons, we have since changed therapists.)
I want to make clear a few things that I am NOT trying to say in this essay:
1 – I do NOT think that as a parent you can tackle all of your child’s issues on your own. If you have a child who has a diagnosis of autism, you should ABSOLUTELY have a trained, licensed ABA therapist working with your child. In fact, you can avoid some of the mistakes I made by involving your therapist in your plan. Your therapist should be able to give you good ideas and tips to help you and also instructions on how to implement the plan and how to take data.
2 – I do NOT think that taking data is stupid. Your ABA therapist should DEFINITELY be taking data. It’s the only way to really see which programs are helping and which ones are not. If your ABA therapist is not taking data, you should certainly be asking them “why not?”
Here is the point that I AM trying to make: You do not need a degree in special education or behavioral science to help your child. Using a few simple principles of ABA, you can supplement your child’s therapy. Nobody knows your child better than you do, so follow your instincts and keep trying things. Lord knows I’ve used plenty of trial and error, with an emphasis on the error. The only way you can help your child is to try.