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…

The Autism Diet

If he asked for it, I gave it to him! This
loaf of bread was supposed to be
sliced and buttered for a family meal
but Tate wanted it. I did not object. He
ate so few things. I was thrilled to
let him walk away with it. 

Got a picky eater? Is picky an understatement? I feel your pain but there is hope. There was a time when Tate ate only about a dozen things total. It didn’t start out that way. He ate baby foods okay and seemed to be a lot like his siblings were when he was a toddler. He ate a lot of finger foods and ate off my plate. But around age two and a half when the language regression hit us, many other signs of autism appeared. The stimming began with hand flapping. Then the refusal to eat almost everything we offered began. When Tate was around three he would eat so few things I could name them easily. And from the time he was three until he turned six or seven his diet consisted of about one dozen things, with very few exceptions. He ate popcorn, crackers, and chips, french fries, waffles or pancakes, grilled cheese, cheese pizza, cinnamon toast, and a couple of kinds of cereal. He would eat a peanut butter sandwich (with no jelly) and the peanut butter was smooth, not crunchy. He would also eat a McDonalds cheeseburger if it were plain. No other cheeseburger would do and he knew the difference immediately if we tried to trick him. Once in a while he would eat chicken nuggets but not usually. I made them available to him often hoping he would eat one. I do not know why he occasionally would but I was always beside myself with joy when it happened. I worried a lot about his calorie intake and his nutrition. There was not a vegetable or fruit in his diet. Well, except that he discovered apples about age four or five and I could coax him to eat one of those once a week or so. That happened sort of by accident I think. Tate used to love to get an apple from a bowl of fruit I have sitting on the counter. He would call it a ball and carry it around for hours sometimes. One day he was sitting on the staircase with his “ball” and I saw him examine it closely and take a bite. I watched him take a few more bites. I quietly cried tears of joy. Then I called my relatives and best friends to tell them about the breaking news. And probably if you are reading this blog you totally get why. This was huge. From that day on he would occasionally eat an apple.

Always a favorite, Cheetos

There were days when Tate ate nothing or almost nothing. There were other days when he would only eat crackers, or only eat popcorn. Nothing made me more annoyed than to get advice from others who said I was catering to Tate and he would eat when he was hungry. They thought I should just put food on the table and he would soon figure out I was not going to make him a different meal than the rest of the family. This kind of advice is ludicrous in my opinion. I’m not sure my child with autism even feels hunger the same way I do but I know if he does he can ignore it. Tate would have outlasted me. Once when he was a toddler he went for three days without eating. I was not trying to outlast him or introduce new foods. I had all his favorites available for him. He wouldn’t eat. He often refused food if his throat was sore. He could not tell me his throat was sore. I could only guess, usually because of a raspy voice or increased drooling.

Those who do not understand autism love to offer advice about how to feed a child with autism. Their advice often requires a tough love approach. Trying to wait out a child with autism is not a very effective strategy in my experience. And hearing, “He’ll eat when he is hungry.” only reinforces for me the ignorance of the one speaking. The difference between a picky eater who is typically developing and a child on the spectrum with food aversions is enormous. I believe it would be like comparing someone who needs glasses to someone who is legally blind. One is inconvenienced and one is handicapped.

I am definitely not an expert on food issues, nor have I dealt with them to the degree so many others have. Tate’s diet was never limited to one or two things like some others. I do not have a whole lot of answers about how to get a child to eat anything they do not want to. In the first place, compared to many children with autism Tate’s diet was huge. I know of a toddler with autism who had one food he would eat - mustard flavored pretzels. I was lucky to have a kid who would eat a dozen different things and a few of those could even be changed up slightly. Secondly, just because something worked for us does not mean it will work for the next kid with autism. And thirdly, the things we tried worked sometimes and not others. There did not seem to be a whole lot of rhyme or reason with Tate’s choices or refusals. And he sure couldn’t tell me what he was thinking or feeling.

The things I remember that may have helped the most are probably all things most moms of kids with autism will have already tried. Of course the first I have already mentioned in the examples of the chicken nuggets and the apples. I made things available to Tate, hoping he’d try them one day. I didn’t take the apples away from him even when he was rolling them around or just holding them. He bruised a lot of apples. We wasted a lot of chicken nuggets too. Another was that I pushed him without forcing him to try things. I could sometimes talk him into just licking something and then I made a huge deal out of him “trying” it. A couple of times those licks turned into bites and a new food to add to the list. Some of the biggest successes we had happened at school. Tate had a Paraprofessional he adored and in fourth and fifth grade Tate often tried new foods at school because he wanted to please the teacher he really liked. Having all the peers around him eating something may have played a big factor there too. Tate tried popsicles, cupcakes, watermelon, and lots of other things at school. Some of them he would continue to eat at home after that.

The seeds don't even cause him to flinch these days.

I did occasionally try the tough love approach, although it was not very tough really. I was so tired of McDonalds one day when Tate was about five or six years old. I told him I would take him for a cheeseburger but it was not going to be a McDonalds cheeseburger. Tate protested but I stood firm. We went to Wendy’s. I had tried other times to get Tate to try cheeseburgers from places other than McDonalds and had no luck. This particular day Tate agreed to try the burger. He ate the whole thing. And then he believed me. Other places do make good burgers. Days later he ate a Sonic cheeseburger. For several years then he would eat a plain cheeseburger almost anywhere as long as the bun was not toasted and did not have sesame seeds on it. Lately neither one of those things matter either! The day may be coming when he can tolerate a little ketchup on the burger. Who knows?

Just keep trying folks. If you can even talk your child into touching something new on their tongue you've made progress. Tate's diet at age 13 is not exactly a balanced one but he will try a new food without too much drama. His diet has definitely increased lately. Don’t give up hope for your child. It could happen for you too.

If you enjoyed this post then you might like It's Too Loud In Here or Don't Touch My Skin