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…

Should I stop calling autism a disability?

In recently months I have received three messages from people with autism asking me to stop calling autism a disability or a handicap. I’ve also been told by more than a couple parents that they would not change their child and take their autism from them if they were given the opportunity. I cannot even wrap my mind around it. My son, Tate, is 12 but functions at an intellect of about age 7.

When Tate was diagnosed I never would have dreamed there were people out there who would not mourn their child’s future the way I did when my son was diagnosed. I accept that my son has autism but I cannot rejoice in it. Autism has created obstacles and barriers that we are constantly trying to break down or find our way around. My son suffers because of his autism. He cannot communicate with us well and is often frustrated because we do not understand what he is trying to say to us.

We have done a lot of therapy to help our son and have seen great improvement in his level of functioning. I’ve since seen a tee shirt mocking the therapy we did. The quote was, “I survived ABA therapy.” My son survived it as well and without it he would have been lower functioning than he is now. 

The premise of some is that autism is not a disability but just another culture or race of people. I don’t buy into it at all. I see what the doctors at Children’s Mercy see: a neurological disorder, a disability.  

I admire Temple Grandin. A. Lot. I mean- I’m a huge fan. She says she would not flip a switch and change herself is if she could. I do not doubt her. I’m even happy for her. However, I still see autism as a disability. She had to overcome a lot of things. MOST of the people that I know in the autism community would flip that switch in a heartbeat. MOST of the people that I know with autism are not going to function at the level that Temple Grandin does.

I wonder if the people who ask me to stop calling autism a disability have ever put themselves in the shoes of someone with severe autism, or in the shoes of their caregivers. Possibly they cannot. Possibly they cannot because their empathy skills are limited or their theory of mind is almost nonexistent. Kids with autism often have self-injurious behaviors. Many are nonverbal, and do not understand their surroundings. Many are a danger to themselves. Many have to wear diapers. Many never learn to read or count. How can that NOT be a disability? The definition of a handicap is “a condition that markedly restricts a person's ability to function physically, mentally, or socially.” Sounds like autism to me.

Seen the news lately? There have been several children with autism who have wandered away and been found in bodies of water. Their mothers probably would have “flipped that switch” and eliminated their children’s autism if there had been one.

Tate, age 12

I’m not unhappy. I'm not bitter because my son was born with autism. When I'm counting my blessings though, I do not count autism. I do count Tate! We make the best of things; and we are enjoying a nice life. My son is considered high functioning. However, he DOES have a disability. While this family counts our blessings and understands we are one of the lucky ones, we still know that Tate is very limited in his abilities and his future will include a caregiver. I call that “being handicapped” and I do not believe it is anything to be ashamed of or embarrassed about. It is what it is. 

I wrote a similar post "Celebrate Autism?" in 2013.

Also by this author: "15 Truths of Parenting Special Needs Kids."

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Losing Language and Finding It

Tate developed language at a young age and spoke in complete sentences, and later lost it. I’ve told that story in other blog posts but I’ll give a quick review. When we began ABA therapy and discrete trial training, Tate was a little older than two and a half. At that time, Tate could still label almost anything but he could no longer speak in sentences. It seemed that when autism stole his ability to communicate, it was selective and it left him with a lot of nouns and a few verbs but no adjectives. He spoke with one word at a time. When he wanted a drink, he no longer said, “Can I have more milk?” but instead he just said, “milk.”

Tate, age 3

Now, this is the really interesting part: Some of his nouns were replaced by other words. The word umbrella was no longer “umbrella” like it used to be when he wanted to play with one, but it was changed to “rain.” The word “broom” was now “sweeping.” Sometimes he could use a phrase, and seemed to be using adjectives, but he really used the phrase as one word. For example, “wolf” was never just “wolf” but was now always, “big-bad-wolf.” The big and bad were not really used to describe the wolf but all three words used together were his label or his noun. It seemed like the autism scrambled his way of thinking. Tate could only think in very concrete thoughts. He was left with absolutely no ability to converse.

Because Tate was our sixth child I knew that most young children do not use pronouns correctly. Tate had amazed us at a very young age by using pronouns exactly as he should. He was able to say, “I want” instead of the “me want” that many small children use. I used to point that out to people so proudly and wonder why he was different than the other kids had been. I am absolutely sure that he could speak in four and five word sentences before he lost language. He could say, “Come, change my diaper” and “I stink” around age two, using the pronouns correctly. And then. It was gone.

As a baby, Tate had picked up pronouns from his environment. I did not spend huge amounts of time teaching him the correct way to speak. An eighteen-month old Tate could say, “I want” but a nearly three-year-old Tate usually said, “Tate wants.” Why was he in tune enough as a baby and toddler to pick up language but unable to learn from his surroundings as a preschooler without intense effort on his part and mine? Where did the pronouns, verbs and adjectives that he had learned previously go? He had to be taught again using systematic lessons. We had to go back to the beginning and start over. 

During the first ABA sessions, the teacher used very simple commands. She did not usually use more than four or five word sentences when she spoke to Tate. She did not use adjectives when giving him instruction. Because Tate’s receptive language was in the twelve-to-fifteen month range by this time, we had to communicate with few words. The more words used in a sentence, the less Tate got out of the sentence. During the discrete trials the commands were, “Do this” or “Build like this” or “give me” or “show me.” This seemed strange to me in a way. We were trying to build his vocabulary, not limit it. I remember telling the therapist, “But he could say, ‘this is delicious’ when he was just a baby and now he can barely talk!” I wondered why we weren’t trying harder to add words instead of limit them.

This was the answer I was given: We were going to build Tate’s expressive language by having him repeat sentences adding one new word each time. For example, when Tate said, “want milk,” I would say “want milk please.” Tate had to repeat my words before he got the milk. After he repeated my words, and as I was handing him his cup, I would say, “I want milk please.” This time he was not required to repeat my sentence but he usually did. We used this technique constantly. He started using real sentences and they began to lengthen. When Tate labeled something, then I repeated the word with an adjective or a verb attached. If he said, “truck” then I said, “big truck.” If he said, “frog” then I said, “green frog.”  This went on all day long every day of the week. Tate regained adjectives, verbs and adverbs. The progress was amazing. Sometimes we stalled for days but other times he added words by the dozens.

Some days were huge for us. Right after Tate’s third birthday in October, I took Levi and Tate out to lunch. Tate marched right up to the counter, looked at the woman taking orders and announced, “I want a cheeseburger please.” I nearly cried for joy. There was a day soon after when we were riding in the car and Tate called my attention to a school bus in the lane next to our car. Tate rarely called my attention to anything so I was shocked. He had never mastered joint attention, even before his regression. The bus was a yellow van. Tate was used to seeing the long buses that his siblings rode so he was confused by the size of the bus. He said, “Look Mom, a little bus.” We had been working that week on big and little and it was clearly getting through. He was generalizing what he had learned at the table. At that time we had only been doing our forty hours of discrete trial a week for about four months. And this is why I so strongly believe in ABA therapy and discrete trial training. Tate was regaining language almost as fast as he had lost it.

I should probably be clear about something because this comes up a lot. Some of you always want to know: Did Tate develop autism at age two? Is that why he lost his language? Tate already had autism. He was born with it. I know this. He had a lot of quirky behavior before he lost his language. He may have had such a huge vocabulary BECAUSE he had autism. I don’t know how autism works. Some kids never gain language. Some kids get it and lose it. Tate’s regression is common in children with autism. I don’t believe his shots at eighteen months caused autism. I didn’t drop him on his head at age two and cause the autism. There was no tragic event in his life. Tate was “different” from day one. I didn’t know what it was called or why he was different but he was different long before he spoke his first word and long before he lost the words.

Other posts about language: What brought you here? and Speaking Tate's Language

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What is discrete trial training?

As soon as I discovered that Tate had autism, I began researching treatments. There are so many ideas out there. I wanted to find a treatment that was proven to have results. I wanted a “cure” for autism. I read the book "Let Me Hear Your Voice" by Catherine Maurice. In her book she told of the huge differences between her children before and after the therapy she provided. I wanted recovery for Tate! The only research based treatment I found was called Applied Behavior Analysis (ABA) therapy. This was the same therapy that Maurice had talked about in her book. The initial research was done by Dr. Ivar Lovaas and published in 1987. Lovaas had made great gains with the children he had worked with.  “Best practice” was 25-40 hours a week of discrete trial. Discrete trials are well-defined tasks with a beginning and end. Big tasks are broken down into small steps and are taught systematically. The end goal might be for a child to be able to recognize and match shapes, but it would be broken down into very small pieces. It might start with the child holding a card that had a black circle on a white background. The teacher would give very simple instructions, often just one word like “match.” The child would need to match the card he was holding to a card in front of him. There might be only two cards in front of him at first: one with a square on it and one with the circle that matched. When he mastered that task, a third card would be added to the table, then a forth card, making the task harder. When the child was able to match the circle correctly after five consecutive trials, the task might switch to matching squares. After all the shapes had been mastered, the teacher might introduce matching a blue square to a red square, showing the child that shapes were still shapes, no matter what the color. After switching colors and mastering several shapes in a variety of colors, we might try having the child match a three-dimensional shape, like a square block, to the card with the square or a ball to the card with a circle. There would be many small steps mastered so that the child with autism could see the much bigger picture. All these kinds of things are learned by the typically developing child during his regular play. It doesn’t take hours of sitting with a teacher to learn simple concepts. This discrete trial method of teaching is how Tate learned almost everything. It took many hours and it was tedious. The end results were worth every minute we spent doing these discrete trials. 

In my constant search for ways to help Tate, I read of many therapies that did not have research to back them up. I read about diets, vitamins, use of steroids, holding therapy, animal-based therapies, music therapy, and several other things. I was willing to try almost anything to help Tate, but nothing had research results behind it except the ABA. I do believe some of the other things help some kids. Swimming with dolphins would be a dream for a lot of kids and it might even help a child with autism in some ways but it is not a valid therapy in my mind.  Music therapy would be very valuable to the child that likes music as well. I know it would not have gotten the results we got with ABA and discrete trial though.    

I have had a few people try to convince me to take Tate off milk and wheat. There are about a dozen foods Tate will eat. If I took him off milk and wheat then there would be almost nothing left for him to eat. I know Tate well enough to know he would probably go for days without eating before I gave in and let him have his crackers, bread and milk back. If I really thought the diet would “cure” Tate’s autism then I’d throw out every last cracker and piece of bread in the house. The kids that I know on the diets, still have autism, most of them are lower functioning than Tate. They feel better on the diets and Tate probably would too. If you feel better then you behave better and can learn better, I am sure.  I just do not think the benefits, if any, would outweigh the difficulty in our home. There are few studies I've seen and no real research to back up the diet therapies that I've seen.  

When Tate was waiting to be diagnosed by a professional, I sent out a letter to our relatives and some close friends. We didn’t want to make dozens of phone calls, answering all the same questions over and over. I explained what we were going through.  We had already decided we would be jumping into ABA therapy with both feet. I asked my friends and family to support us in our decision and not to buy into all the theories about “cures” they would hear about. There were no cures and only one research based therapy we were going to use. Immediately, I started hearing back from people with the suggestions I had specifically asked them not to give me. I heard: Tate needed to be going to a chiropractor, begin homeopathic treatments, use vitamins, take him off milk, and sign him up for horse-back riding lessons. Lots of people were just sure the government gave grants and all kinds of money to parents to help kids with autism too. 

I am very happy with the outcome of the early intervention program we provided for Tate. I am confident he benefitted a lot from the things we did. I don’t think I will ever look back and say I should have done anything differently. Had I hoped for a complete “recovery” from autism? Yes. Is it realistic to hope for such a thing? Probably not. Did God answer my prayers for Tate? Absolutely! 

Also by this author: "15 Truths of Parenting Special Needs Kids."

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!