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…

It's Not Such A Bad Life

The day I realized Tate had autism, and for a plethora of days after, I was dazed and distraught. Tate got an official diagnosis well before the age of three. We had decided to use the researched based therapy called Applied Behavior Analysis (ABA) before we even had the diagnosis and we had already begun our in-home therapy with a certified behavior analysis. The books I read said we had a window of time, a fairly small window of time, in which to help Tate. I was frantic. I could not get therapies in place fast enough. I wanted everything done RIGHT NOW! I needed to focus. I forced myself to calm down, get organized, and get busy. I was up most nights reading about how to teach Tate and then trying to implement the best strategies all day long. Every waking minute needed to be an educational one for Tate. There should be no down time because he used down time to stim. I was exhausted. I saw time slipping away and I felt like I was moving in slow motion. I was literally in panic mode. Why would nobody DO SOMETHING?! Couldn’t everyone understand how urgent it was that they help me save my baby and his future? We not only had to teach him to do things he had never learned to do on his own, we had to reteach him how to do the things he had stopped doing and we were in a race against time. I kept reading how elastic and malleable a child’s brain is until about the age of seven or eight. After that, we would the progress would stall, according to the books I read.* So, I pushed and pulled, kicked and screamed, made phone call after phone call, and appointment after appointment, trying to put all of the people and plans in place that could help us to help Tate gain and regain what he did not have. He had lost so much language and so much of his personality. He was afraid of ridiculous things, including other children. He could not pretend or play with toys appropriately. He could not communicate effectively. He spent a lot of time lost in stereotypic self-stimulatory behavior.

Before the very first therapist showed up to see Tate in our home, I had successfully eliminated some of the stereotypic behaviors like the hand flapping. But, as fast as one behavior was extinguished, another would replace it. I targeted behaviors one at a time. Sometimes the replacement behavior was worse than the one I had eliminated, although none were ever as awful looking to me as the hand flapping. I had to be creative. Tate loved to look at his reflection. He would stand in front of the blank television screen or the oven and turn his head, watching his reflection with peripheral vision. I put a fitted sheet over the front of the television and hung a big towel over the oven door to keep him from spending long periods of time engaged in this. Tate liked to run without purpose. That means he would run back and forth through a room, but only for the repetitiveness of it, not because he was pretending or playing purposefully. I blocked his paths. Tate loved thick books so he could fan the pages over and over. I put all the books except his picture books up higher than he could reach. Tate liked to push the buttons of toys, to hear the same song or noise repeatedly. I took the batteries out of those toys.

Tate at Preschool, age 3

Those first months of working so hard are sort of a blur. Even after we enrolled Tate in the early childhood autism program through the University of Kansas (KU), I was still exhausted. I’d never worked harder at anything in my life than I did trying to bring Tate back from the autism that stole him from me. When Tate aged out of the programs KU had to offer and entered public school I found I would have to wear yet another hat (boxing gloves might be a better illustration.) I had to learn how to fight and argue and scrap with the public school district. Not everyone who was to be involved with Tate’s Individualized Educational Program (IEP) was educated about autism, cooperative, and friendly. We fought for four long years, with very little progress made compared to the years before those and the years since. 

We saw a tremendous amount of growth academically the year Tate was in fourth grade and he has done well every year since. Tate recently began seventh grade. Things are going so well now that I can sometimes almost forget about those awful four years of primary school. I can also go days at a time now without remembering the day that I learned what autism is. Back then, when I was working so hard with a preschooler that could barely talk, and again later, when I had to fight the public school for services, no one would have been able to convince me that someday I would say, “It’s not such a bad life.” But, now I can easily say it. I can say it now BECAUSE of all the early intervention we did back then. I can say it BECAUSE of all the fights I won to get Tate the services he needed. Today we reap all the benefits of the things we did back then. Tate is only 12 and the work is not over but it is so much easier now.

It’s not such a bad life. I’m not sure I will always be able to say it. Perhaps we will have bad things happen again in our future. But for now I can say it. I really can say, “It’s not such a bad life.” Wait for it.... I can even go as far as saying, "It is a really good life!" Autism is what Tate has but autism does not keep us from loving or laughing. It does not keep us from going and doing. We are blessed. We have a good life, autism and all. A similar post: What did I do to deserve this?

*I do not believe now that we ever saw a huge change in the rate at which Tate learned after age seven or eight like I kept reading. Tate continues to make gains. 

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Three Steps Forward and Two Steps Back

Three steps forward and two steps back: My life is a version of hhe bunny-hop.  We make a little progress and then have a set-back.

This week has been a hard one. I’m not good at tough-love, especially with my two youngest. It has always been hard for me not to spoil my kids and sometimes I have had to undo damage that I have inflicted, but it seems doubly hard for me not to give the two youngest what they want. What they want is not always what they need though and that is where the tough-love comes in. Tate and Sydney have to do without so much in their world that I cannot always give them: regular friendships, the ability to understand social relationships, a grade-level understanding of academics, age appropriate motor skills, the ability to communicate what they are thinking or feeling, and much more. So, when there are things that I CAN give them, things they want, I tend to bend over backward to make those things happen. Saying “no” to them is hard for me. 

It has been a long time since I’ve left Tate at school crying. He used to cry almost every morning before school but that was before we had the kind of IEP team we have now. I had forgotten how hard it is to walk away from the young man that has custody of my heart when he was sobbing. This morning I left him, wiping tears, with his shoulders shaking.  I told myself it was no big deal. I had a talk with myself about toughening up and the “big picture.” I got a block from school and burst into my own tears. I wanted to turn around, run back into the building, tell him that everything that led up to the tears was a mistake, and we could let him have it all his way. But his way, is not the best way and his way will just handicap him further. 

There is a behavior stereotypic of autism called echolalia. It just means echoing or parroting words or phrases. Tate used to echo movie phrases or book passages a lot. He also used to echo the last word of every sentence he spoke. He often did that in a whisper. It was pretty creepy sometimes and it was one of the first behaviors we eliminated when he was diagnosed with autism. I worked hard to rid us of that behavior by constantly telling him not to repeat, or “No whispering.” If I had a dollar for every time I said, “No whispering” I could probably buy a new car. I always said it with a smile on my face because I never wanted Tate to think he was in trouble or doing something naughty. A child with autism cannot help the fact that they have stereotypic behaviors (stims.) A stim often looks like a behavior you would see with Obsessive Compulsive Disorder. Stims can be redirected and eliminated sometimes but are often replaced with other behaviors that are even worse than the original behavior. We try to eliminate the worst stims we see and live with the milder ones.   

Occasionally when Tate is stressed he can still be heard whispering the last word or sometimes the last sentence he spoke but he doesn’t do it often. We don’t hear the movie dialogue like we used to either, but he has taken it to another level. He tells bits from sitcom stories as if they really happened to him. This is where our problem today began. Tate’s favorite shows are shows on the Disney channel: “Sam and Kat,” “Jessie,” “i-Carly” and “Good Luck Charlie.” Tate has taken scenes or jokes from the shows and built stories around them to tell to anyone that will listen. His latest story is that he will start a babysitting service in his apartment building (we actually live in a house) and he will “change them, feed them, burp them” as well as have a website for Tate’s babysitting service dot com. I have heard this over and over for days. Before that, he was going to be in a play on the high school stage and he was inviting people to it. I actually had people stopping me and asking what Tate’s play was going to be about. He loved the attention. It didn’t matter to him that it was all fantasy and he couldn’t really “deliver” a play.

This is a fairly new thing. Three steps forward:  Tate is seeking attention from others. Tate is communicating. Tate is pretending. All these things are things we WANT to see when a kid has autism. 

I didn’t know what to do about this new behavior. At first I listened and gave him an audience. I tried to help him with writing a script for his play. He was not interested, nor does he really have the ability to plan or write a play, even with help. So then I tried talking to Tate about it, explaining that he was pretending and he couldn’t continue to talk to people about all the pretend things. I told him it was not appropriate and it was confusing to people. He did seem to make an effort to hide it from me and only talk to people about his fantasies when I was not standing right beside him. So then I tried asking him nicely to stop. It stopped at home but not at school or in the community. 

Two steps back:  The fantasy talk has become a real problem. He is interrupting teachers, dominating conversations with peers, and causing awkward moments because people do not know how to respond. Soon, I fear he will be alienating people from his world who used to enjoy his company.  

So, what’s a mom to do? Tell the dad to take care of the problem, of course! Shawn is a very involved dad. Tate recognizes that Mom is a softer place to fall than Dad and Dad is the authority figure in our home. Dad had not yet addressed the “problem” although he knew it was becoming an issue. Last evening Dad initiated the tough-love I asked him to. He had a serious talk with Tate. Shawn did not frown, did not raise his voice, and did not try to intimidate Tate in anyway, but the message was clear:  the pretend babysitting service and all the other fantasies have to stop. There will be no more conversations based on those things. This morning I reminded Tate that he could start conversations with his friends and teachers about a lot of things. He could talk about his pets, his Halloween costume, or even a show he liked to watch, but he was not to talk about having a babysitting service or anything else that was not true. He seemed okay. He stimmed a little, but not a lot. We walked into the school, I greeted his Para and Tate choked. Then he began to sob.  He rarely cries. Seriously, I think he has gone a whole year before without crying. In Tate’s world, crying is big. In Tate’s world, crying is huge. Oh how I wish he was still two years old and I could make everything better. When Tate was two I still didn’t know what autism was. I still didn’t know our world would be turned upside down by a disorder I didn’t recognize. In my mind I still had six “normal” kids. Until you hear the words, “Your little boy has autism” I’m not sure you could understand how badly I would like to turn back the clock. Ignorance was bliss.

I’ve read a lot of books about autism. A. Lot. Of. Books. Some of the most helpful books I have read, were written by adults with autism. Temple Grandin is a favorite author of mine, and Sean Barron is another. Sean tells of being a young man and being very interested in television. He also was interested in having friends but had no idea how to make a friend or how to communicate. He didn’t know what was socially acceptable and what was not. He knew that the cartoons and sitcoms he watched got a lot of laughs from people so he began to memorize lines from the shows and he would deliver them to his school mates. Because the scripted lines were not set up properly and were out of context, Sean would get no laughter. He couldn’t figure out why and it left him angry and confused. I often think about this when Tate is trying to tell a joke he heard on television or is quoting movie lines. Is it the same for him? Is it different? Will he ever be able to tell me? 

We move forward in other ways, only to fall back. For years I have tried to interest Tate in participating during worship services. He has been singing for years but zones out for the rest of the service. I have tried to get him to hold a songbook while he sings but he has complained that it was too heavy and he couldn’t look up the numbers because it was too hard. I have made some huge headway with him lately. Three steps forward:  Tate has learned to follow along and keep his place while we sing hymns. He understands how the stanzas work and the chorus repeats. Most recently, he began looking up the numbers by himself, rarely needing help to find a hymn!  He has even begun to pick up his book without me reminding him. Two steps back: Holding that “heavy” hymnbook has brought back a stim that we broke him of many, many years ago: fanning the corners of a book. I’m not talking about fanning the corners for a second and putting the book away. I’m talking about becoming LOST in the movement of the pages as they fan across his thumb. His whole focus is absorbed into the corners of that book and it could keep his attention for twenty minutes easily. No big deal if he only does it during worship? No! It has the potential to consume him at home and with every book he can get his hands on. So, after we sing, I take the book, put it back in the rack and tell him he is not allowed to touch it again until it is time to sing. What’s the big deal? Do you know how many books there are in this world I will have to keep an eye on now? Ha! Honestly, I feel like I can hear the music playing now. The tune is “The Bunny Hop.”   
There is a follow up to this story here: Part Two