Confessions From a Stim Dealership

When he was young, my son’s autism symptoms were severe. Out of a 60-minute period, he was stimming for over 55 minutes.  He rarely looked in my direction, or gave signs of interest in interaction. His language consisted of “I want…” to get very basic needs met, like water or food.  A DAN! professional told me his nervous system was “like an old jalopy trying to merge onto the freeway.”

He had a variety of ways to stim.  He verbally repeated video scripts, and also stared at objects with intense interest.  His preferred stim would abruptly shift.  One day or week, it would be Thomas the Tank Engine. Rolling engines along tracks, he looked at the wheels with his head positioned on the ground, sideways.  After a period of time, Thomas and Friends would be discarded, and Sesame Street would replace them.  I tried very hard to introduce new topics, but instead of playing with them appropriately, they became new stims.  If he couldn’t find all the necessary pieces of play sets he wanted to use, he would become undone.  This happened frequently, because his memory was poor, and he would forget where he put them.

I couldn’t deal with that.  Autism was hard enough and shattered every dream we had for our son. Children with autism stim as a way of taking care of themselves.  As a parent, I felt I had to provide what he was desperately searching for to meet his own needs.

So, what did I do? I made sure that I had everything he needed, “in stock”, all the time.  I was so panic-stricken by the idea that he might want something to comfort himself, and I didn’t have it, that I would shop on e-Bay late at night looking for the old Sesame Street toys and Fisher Price play sets that weren’t sold anymore in stores.  When he didn’t like the Thomas trains for his age, I went to an adult train store.  The owner solved the mystery for me.  He said, “You know why he doesn’t like the kiddie sets?” No, I was mystified.  I thought he just had expensive taste in stimming.  He explained that they were missing the linkage—the thing that made the wheels do what they do on the rails of the television series.  Ohhh! Light bulb moment!  So I bought all of those. And being fragile, they broke immediately. And I replaced them.

We owned every video in every series. Every book! I unplugged the television and said it was “broken”. It didn’t matter.  I hid the videos and plugged the tv back in. I cancelled the cable contract. He would stim on the thing that remained constant on free kids shows, “This program was funded in part by a grant from the US Department of Education, and by contributions to this PBS station from viewers like you. Thank you.” When I “broke” the tv again, he would ask me to say it--again, and again, and again. The library? Forget it! He would have meltdowns in the building and when it was time to return the materials. They just became new stims.

What was I doing wrong?  Several things. 

Buying for him and having objects at the ready was not the answer.  He was doing his best to take care of himself in a world that was totally overwhelming.  His body was ill, and he needed medical treatment. When the physical illness began to be addressed, the stimming reduced considerably.  But, I was really the problem.  I had to become part of the solution.

I attended the ‘Son-Rise Program Start Up’ at The Autism Treatment Center of America.  There, I was lovingly called the proprietor of “A Stim Dealership”.  Yes, children with autism need to stim, but my beliefs about having to provide everything on demand were preventing him from coping, and learning flexibility. It was my coping mechanism to avoid a meltdown, but it served me, and not my son. 

I was taught to join him in a quiet Son Rise playroom and be there in a patient, loving way. If he was stimming on trains, I would get my own train and move away from him and do the same thing.  He saw that I could love what he loved without demanding anything from him.  He learned that I would be there in those precious few moments, fractions of an hour, when he was ready for interaction.  Not like a bobcat, ready to pounce with my own game or agenda, but gently there, ready for a look, or a word in my direction. I would give him abundant praise. “Thank you for looking at me!  Thank you for talking to me!” He quickly learned that interaction was great currency in our relationship, and all I had to do was love him in the moment to earn his trust.

What my son needed could not be bought. It was for me to be there to meet him in his solitary world, and step-by-step, be a magnetic ambassador for my world.  He began to see that there was fun to be had there.  He would retreat as needed, and I would join again and stim across the room and wait for the next “green light”, a signal that he was ready to interact again. 

My stim dealership is closed now, due to a lack of interest.  It is also closed because I changed.  I have one old Super Grover from e-Bay saved in the top drawer of my dresser.  It reminds me that in order for my child to change, I had to change first.