Stims: Good, Bad or Ugly?

When Tate was diagnosed with autism, I did not know anyone else with autism. I had no idea what the right thing to do was, nor if there were any treatments. I quickly began educating myself about autism. I read many books and surrounded myself with people who could help us. We began ABA and tried our best to use “best practice” methods. Forty hours a week of discrete trial and incidental teaching, redirecting stereotypic behaviors, and teaching social skills. 

I did have the Internet, but social media was not yet a “thing” when Tate was three years old. For that I am grateful. Shocking, coming from a mommy blogger who loves nothing more than interacting with others from the autism community isn’t it? Let me explain. 

If I had turned to Facebook and mommy bloggers for my information, I'm afraid I would have done many things differently. And if I had done many things differently, Tate might still be stimming his day away and unable to do so many of the things he can now, twelve years after his diagnosis.

So many autism parents today, in the name of autism acceptance, are telling us not to try to change our children with autism. The politically correct thing has become “Don’t ask a child with autism to step into your world. You should step into his.” The thing is… mom and dad will not always be there. The child with autism is going to grow into an adult with autism. And all those things that you did not ask him to learn, and all those things he did not have to give up (because he has autism) have the potential to make his adult life so much harder. The stereotypic behaviors could make him a target for bullies. Those things you did not ask him to give up are likely going to be ingrained and a huge part of his day.

According to so many autism moms who are blogging, their children with autism NEED the stereotypic behaviors. They say the behaviors serve a purpose. Some even suggest that we should stim right along with the child. 

The sensory issues are real. I get that. I get all that. Tate NEEDED to do those things too, when he was small. But those things were getting in the way of his learning. And he NEEDED to learn. I chose the hard road. The majority of the stimming NEEDED to go. One of the hardest parts was that when one stim was eliminated, another often took its place. But we kept at it, gently trying to mold and change the way our son dealt with stress, boredom, and excitement. 

Tate wanted to run back and forth on his toes, from one end of the room to the other. I put things in his path and redirected his attention. All. Day. Long.

Tate wanted to look at his reflection in the oven door, the television, and mirrors for long periods of time. I covered the oven with a towel, the television with a fitted sheet, and took down the mirrors.

Tate wanted to use books to fan the pages for thirty minutes at a time. I made sure he stopped and looked at each page or we put the book away.

Tate wanted to wave his hands and wiggle his fingers. We gently took his hands and put things in his hands to hold and tried to keep him busy playing. 

Had Tate’s favorite stim been head banging until his forehead bled, no one would think I was a tyrant for redirecting it. Had his stim been to bite himself or others, my efforts would have been approved of as well. Would he have NEEDED those things? I drew my line way before those things though, so I have been told I am not accepting of Tate or his autism. HA! I’d step in front of a truck for my boy and I’ve worked so hard to help him. It would have been much easier to just let him stim. 

I heard from a mom recently with a son about ten years old. She had been trying to convince a therapist that her son NEEDED to stim and it was cruel to ask him to stop or to reduce the amount of stimming he engaged in. Because the therapist would not agree, the mother thought the therapist did not understand autism. It could be that the therapist understands autism better than the mother.

What if I had not redirected all the stimming when Tate was small? What if I had given up because it was so hard to do? Our lives would have been so much easier for those preschool and early elementary school years, for sure. But what about now? Tate is six foot, three inches tall. Any stimming he wants to do now, would be impossible for me to deter. He still occasionally stims, but it does not take up large parts of his day, nor does he rely heavily on it to entertain himself. His go-to stim now is pacing, which he does when he is nervous. He sometimes stiffens his body and uses his hands to push on his legs when he is bored or anxious. But those things do not consume him like his stims did when he was small. Would he have eventually outgrown it all on his own? 

I suppose he might have stopped or reduced all those stereotypic behaviors on his own. I could never prove he would not have. I was unwilling to take that chance. All those hours I redirected the stimming were not wasted either way, because every minute Tate was not stimming, he was learning. I was teaching him: how to pretend, how to read, how to interact with others, how to use verbs, pronouns and prepositions, social skills, turn taking, how to tell a joke, and so much more.

I know how hard it is to redirect stimming. The enormity of the task is intimidating. If you choose to try to eliminate the stimming, you may become discouraged at times. But, do not let the moms who are engaging in stimming with their child, in the name of autism acceptance, deter you. It may be that many of those kids will someday be six feet tall and their moms will be wishing they had eliminated or reduced some of the stimming when they were very young too. 

I didn’t “cure” Tate. I'm not making that claim. But I did help him to “fit in”. I do not understand the mind-set of so many parents in the autism community lately. Asking a kid with autism to conform is not abusive. One of my favorite quotes is the one that tells us not to judge a fish on its ability to climb a tree. But, I did not ask my fish to climb a tree. I asked my fish to swim faster, harder, and be a stronger fish, something that would be politically correct for a typically developing child, but not for a child with autism these days. And yet, we autism parents are often asking the world to treat our kids as they would treat any others. 

Perhaps there is no true right or wrong answer about the stimming. Or perhaps we will not know until this group of children who are encouraged to stim have grown into adults. Perhaps these children will be far better off and healthier than my son who was constantly asked not to stim, or to choose a more subtle stim at times verses an obvious one. Perhaps there will be no difference at all. 

Redirecting the Stim: I'd Do It Again

My fourteen-year-old son Tate has autism and my eleven-year-old adopted daughter has Fetal Alcohol Syndrome (FAS). I blog about them, the things we have done that have helped and the things that have not helped: the lessons we have learned, their siblings, classmates, teachers, IEPs, and many other things that have come with the experience of raising these special children. I do this for many reasons. I hope to help those who do not live with autism or FAS to understand a little bit better what these disabilities look like. I also try to help those who are coming after us so they can draw from some of our experiences, perhaps making their own lives just a little bit easier.

I do not claim to know everything and I often remind people that I am just a mom. I am not a doctor, an educator, or a therapist, and I am not formally trained to help anyone. I just know what autism looks like in my son and what FAS has done to my little girl. I have years of experience to share. The ideas and methods we used are not something I believe must be followed to achieve success. I know sometimes there is more than one solution to each problem we encounter and I know the individuality of a child and their family should be considered. There. This paragraph is my disclaimer. So please no messages about how I’m doing it all wrong or that I'm judging you for doing it differently...

Tate, around the time of his diagnosis

There are some things I would do exactly the same if I were doing things over again. All the early intervention we did with Tate and the Applied Behavior Analysis (ABA) was absolutely invaluable. All the money we borrowed was worth it. I have been told by a few other bloggers that ABA did nothing for their child with autism but for us it was life changing. The advocate we take with us to Tate’s IEP meetings is something else I would point to as absolutely necessary. Tate has had services I would have never obtained without her help. So far no one has steam coming out their ears, right? But wait for it. Some of you will not like what I have to say about stereotypic behavior.

I have often heard, “Every behavior has a purpose.” ABA therapy revolves around this and I do not disagree. ABA also says that the stereotypic behavior serves a purpose of some kind but that behavior can be replaced with one that will serve the same purpose. In other words, "If you eliminate one stim then it will be replaced with another." I found this to be true. Tate still stims but his stims are subtle and they do not keep himself or those around him from learning or engaging in activities or with other people. It took a lot of hard work to eliminate some of Tate’s former stereotypic behaviors but I am not sorry we did it. In my opinion the hand flapping was not in Tate’s best interest.

Anytime I write about this I get objections from a few parents who do not understand why I stopped Tate from hand flapping when he was a preschooler. I hear: “It’s not hurting anyone.” And then there is: “I would never ask my child to stop doing something that was calming/comforting/pleasurable/satisfying to him/her.” Really? Are those statements even valid? What if your child were pulling his sibling’s hair? It is a behavior that he finds satisfying, right? Of course you would stop him from doing that because it hurts another person. Would you do your best to stop your child from smearing his feces? You would? Okay. You would want to stop him from doing something that was unhealthy. How about head banging? If he were banging his head on the floor over and over then would you stop him from doing that? You’d block him. You’d put a helmet on him. Is it because it is harmful to him? So there are SOME things you would try to redirect but not others. Hand flapping. Hand flapping is acceptable to you because it is not hurting your child. It is not filthy. It is not hurting a sibling. Perhaps your child can learn while he is hand flapping. Mine could not. When Tate hand flapped it did hurt him. It consumed him. It kept him from learning. Our goal was to make every minute of his day a learning experience. He could hand flap, fan the pages of a book, wave his cloth diaper in front of his face, stare at his reflection, or run “without purpose” for thirty minutes to an hour at a time. The more Tate stimmed, the more he wanted to stim. The stereotypic behavior itself was reinforcing. It was a habit. The more Tate engaged in stereotypic behaviors the less opportunities he had to engage with his peers. His peers saw the hand flapping and some of the behaviors as odd and they approached Tate less because of it. The stereotypic behaviors were sabotaging so much of Tate’s social and academic education. As difficult as it was to get four and five year olds to look past the stereotypic behaviors, I imagined it would be infinitely harder to get peers in Junior High to be understanding of it. Perhaps Tate would have just "outgrown" the behaviors like hand flapping. Some children do. But some do not. I was not willing to risk it and have to look back and wish I had tried to eliminate them. We replaced the more obvious stims with much less obvious ones that still serve the purpose he needed them for. 

Sydney, age one

Sydney came to us with stims too and I worked hard to eliminate those. Being neglected for the first ten and a half months of her life she spent much of her day rocking. The rocking had a purpose. Children who are neglected find ways to stimulate, and occupy themselves, and comfort themselves. After we got Sydney home and I knew she was provided with all the things she needed to thrive I worked constantly at gently stopping her when she rocked. It did not take very many weeks to stop the rocking. I am so thankful I did what I did as I have seen another adopted child older than Sydney who still rocks. The advice that child’s parents got was to allow the rocking because it fulfilled a need. I feel the need could have been fulfilled in other ways. I could be wrong. I'm not an expert. But in my experience with my children: the longer a behavior goes on the harder it will be to stop.

Some might think I was mean or intolerant. Some might call what I did "tough love." Once a mom who was upset with me for a blog post I wrote implied she loved her child more than I loved mine because she embraced his stimming. She said, "I love my child enough to let him stim." I wish I had said, "I loved mine enough to help him to stop." but I am never good at witty comebacks. There is no doubt in my mind that we all love our children immensely regardless of our position on this subject and others. It does not mean you are a better parent if you let your child hand flap or rock. It does not mean I am a better parent if I stop mine from doing it. We all want what is best for our children. I drew the line before some others would I am sure. Some might draw it before head banging or hair pulling but I drew it before hand flapping and rocking. And I do not regret it. I cannot go back and do it another way to try and see which way worked best. I am glad I do not have to. It was hard work. It would have been much easier in the short term to let Tate spend his days tossing his cloth diaper around and hand flapping. It would have been so much easier in the short term to let Sydney sit in her playpen and rock. But would I have kids as high functioning as I have now? What do you think?

There are a few things I have changed my opinion about and wish I had done differently. I will have a post up about that soon. I had originally thought I would talk about those things in this post too but I am told a post more than 1000 words is too long. So stay tuned…

Are you dreading the holiday break? Home? Alone? With your kids?

Tate came home from school a little early today because he wasn’t feeling well.  I was happy to go and get him.  It reminded me of something.  There was a time that I prayed some mornings before I got out of bed that Tate would have a fever so I could keep him home with me for the day.  Let me explain:  When Tate was in preschool I was miserable.  He was the sixth of seven and we had never had a child in a preschool program or a daycare before.  I was a stay-at-home mom for the reason that I wanted to spend every minute I could with my kids right up until the day they started kindergarten.  My husband and I even voiced our opinion loudly every time the idea of all-day kindergarten came up in our district. 

After Tate was diagnosed with autism, I did the research and found that best practice therapies for Tate were going to include forty hours a week of applied behavior analysis.  We got busy and hired a couple college kids from our area to help me to fit in forty hours a week of discrete trial training and incidental teaching.  Tate was not able to pretend.  His receptive language was not good.  His expressive language was almost non-existent for a while.  I found out quickly that forty hours a week broken into 5 eight-hour days was not going to be practical, although I kept it up for a while.  Six hours, six days a week wasn’t quite forty but it was a little easier.  It was exhausting.  I saw that I was giving eighty percent of myself to Tate and spreading the other twenty percent of me to the other five children and my husband.  No one complained.  We all knew that we had a small window of time when Tate’s brain was most malleable and the motto here was “Early intervention is the key.” 

When we heard that a spot was open in the well-known Early Autism Program at Kansas University I was both thrilled and sickened.  It was what Tate needed but I felt like it would rob me of my baby.  Looking back I know that autism had already robbed me of my baby and the Early Autism Program would work hard at giving him back to me, but at the time, it was hard to hand him over.  Those poor teachers!  They had probably never had a mother hover like I did.  The large classroom, where Tate would be taught to play with other children had an observation room.  He was surrounded by typically developing peers and he had his own teacher that would help him to interact.  That first month I rarely left the building.  I sat in the observation room for hours.  The small rooms where they took Tate for one-on-one discrete trial training also had an observation room.  I learned as much as Tate did, I am sure.  I watched Tate but could also occasionally catch sight of other children with autism.  I believe there were four or five enrolled in the program.  I was very humbled to learn that Tate was barely handicapped at all in comparison to some of the children I saw.  I learned to count my blessing pretty quickly.  I had been so sure that Tate was the pickiest eater on the planet because he would only eat about eight or ten things.  I met a little boy who only ate pretzels.  Period.  Then there was the stimming.  I wanted so badly to break Tate of his stims (repetitive stereotypic behaviors) but I found that his stims were nothing compared to some.  One boy sometimes came to school with a bloodied head because he liked to bang his head on very hard surfaces.  I had wished that Tate could have conversations instead of just spouting movie quotes and labeling things, but I met several children that were completely non-verbal.  I wished Tate could sustain eye contact for long periods of time.  I met a little girl who would not look into anyone’s eyes for even a second.  I watched kids with autism who could throw a twenty-minute fit, pause for a minute to catch their breath, and start all over again.  Teachers had to rotate in and out as they became tired but the tantrum throwers never seemed to tire.  I learned a lot from all those hours spent in observation.  I was so thankful for all that two way mirrored glass!  It is probably a good thing that they do not have it at the Junior High!

Tate tells me he will be going back to school tomorrow.  Ha!  I will be trying to talk him into telling me he needs another day to recover. 

My three college kids are home for a month.  I am counting the minutes until my three youngest kids are home for Xmas break.  They will be home for 16 days before I have to hand them back to their teachers.  I am so excited.  No alarm clocks, no lunch boxes to pack, no rushing to beat the bells in the morning, no waiting outside at 3:00 in a long line to retrieve them, and no strict bedtimes.  There will be leisurely mornings, no real dress code, lots of playing and laughing and movie watching.  There will probably be a little bit of whining and some sibling arguments to referee but nothing I cannot handle. 

I see and hear so many comments from moms that say they are dreading the holiday break.  It breaks my heart for their kids.  I just do not understand it!  Is it the fighting they do with their siblings?  Then make them stop!  Who is in charge anyway?  My kids fight sometimes.  I make them stop.  Is it the boredom?  Give them something to do!  Play with them yourselves!  It is not punishment for you that your kids need your attention.  I’ve said it many times before and I’ll keep saying it:  If you did not want to be a mama, why did you have kids?  They are a lot of work, some more than others.  Didn’t you know that?  You were a kid once too!  I had a great mama and I want my kids to remember me as a good one too.  Will your kids remember you playing with them?  Will they remember you counting the days until they'd be home for a break or will they remember you counting the days until they'd be back in school and someone else had to deal with them?

Okay, I’ll step off my soapbox.  I’m countin’ the days!

What is discrete trial training you ask?  I talk about it here:  http://quirks-and-chaos.blogspot.com/2012/05/what-is-discrete-trial-training.html

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