Unpredictability Means Anxiety

When Tate was a toddler there were many things that caused him anxiety. Taking an alternate route to a familiar place could set him off. A power flicker would guarantee a meltdown. There would be crying, hyperventilating, and lots of stimming. I did not understand the real issue behind the anxiety when Tate was small. I assumed he was afraid of the dark or afraid of thunder as many young children are. He seemed so terrified at the first sign of raindrops. I wondered if he could be afraid of the color orange because detour signs seemed to cause him pain.

Because Tate did not really have conversations but mostly just talked AT us, it was hard to understand what he meant when he tried to tell us things. It was also hard to reason with Tate about anything. I was often left scratching my head, playing detective to decipher what he was trying to tell us.

Being so anxious when it looked stormy left me wondering if maybe Tate had a fear there might be a tornado since we do live in Kansas and have warnings fairly often. I also assumed he was afraid of the dark because of his reaction to a power flicker. I bought flashlights that charge in the outlet and stay lit so if the power went out it would not be completely dark. I wrote a social story about storms and the dark. I reassured him anytime he seemed anxious about the weather that our home was very safe. Yet, I could not see we had really helped him at all.

I eventually discovered Tate’s anxiety was not really about the darkness or the storm outside and definitely had nothing to do with the color orange. As I watched him react to detour signs in the road and light switches that would not respond, I came to realize Tate was really afraid of the unpredictability a power flicker or a detour sign brought. He had to be able to COUNT ON the lights when he flipped the switch. He needed to be able to COUNT ON the road that took us to his school or to the store. Tate’s world revolved around routine and sameness. When we drove a different route to a familiar location, he panicked. When the lights went out, the television stopped and the video games stopped it was all out of his control. The meltdown was not out of anger and never about the fact that a power outage had caused his movie to prematurely end, as it might have been for a typical toddler. The meltdown was out of anxiety because he did not KNOW when the power would come back on or the road would open back up. Tate could not handle the fact that the television and lights were no longer reliable or our route to the store had changed. Tate has to KNOW what comes next in order to feel secure. He needs to be able to hit “play” on the DVD player and know it will play. He needs to know we take two rights and then a left to get to his school. His world is much smaller than yours or mine. 

Tate is 13 now and barely has a reaction these days when our power flickers or goes out during a storm. He never becomes anxious if we see a detour sign now either. I am elated at the progress he has made. The last few times we have had power outages at home, he retired to his bed with a flashlight and a battery operated game. He stims a little more but he does not cry or panic. There is light at the end of our dark tunnel… pun intended.

Tate still has anxiety often and sometimes there is little I can do to help. The last nine weeks of this past school year, Tate’s bicycle was at school. Bike riding was incorporated into Tate’s P.E. class at my request. Having his bicycle at the school upset Tate. His anxiety level skyrocketed and his number one topic of conversation for three or four weeks was about his bicycle. And then he stopped obsessing as if it had never been a problem. That is progress.

Our school district’s Extended School Year (ESY) began recently. ESY is just another name for summer school. We actually do not call it by either name at our house. We call it math camp. Tate does not go to SCHOOL in the summer but he is willing to participate in MATH CAMP. And as every other child is walking through the school doors to have summer school, Tate is going to “math camp.” Anything to avoid the anxiety.

Ten years with the autism diagnosis and I am still learning. The same week ESY was to begin I was going to be away from home for four or five days. I needed to prepare Tate for what to expect while I was gone. I explained he would be escorted to Math Camp by an older sibling. I showed him I had bought his favorite snacks. The more I talked the more he stimmed. His eyes were beginning to water and his face was going splotchy. I assumed he was upset because I was leaving or because summer school was starting but that was not the problem. Tate reminded me the new Sponge Bob movie would be out on Tuesday while I was gone and I had promised to take him to buy it. As soon as his older sister assured him she would take him straight from the school to Walmart, his face cleared up and his stimming stopped. It was all about the movie, of course!

A few years ago the conflicts and the anxiety were much harder to manage. Tate’s communication and my detective skills were not as developed a few years ago. Tate could not calm himself as quickly then as he can now. That light at the end of the tunnel keeps getting brighter!

If you liked this one you might like to read: Don't Touch My Skin

An Autism Mom's Thoughts About Disney's Inside Out

Spoiler alert. I’m going to talk in detail about the plot and the characters from the Disney movie “Inside Out.” Stop reading if you do not like spoilers.

If you’ve followed my blog for more than five minutes and if you know anything at all about us then you know my son Tate has autism and our lives revolve around movies. He has the release date of all the movies he is interested in (which include most G and PG rated ones) on our calendar. I don’t know how he does it, but before most of us have seen the first trailer for a new movie, he has the release date on the calendar and has memorized the actors involved in the making of the movie. To Tate, these things are as important as our loved ones and our careers are to us. He spends most of his waking minutes thinking about movies and talking about movies. So, of course today, on opening day of Disney’s “Inside Out” Tate woke with great joy (pun intended.) He toe-walked and bounced as he paced all over the house in anticipation. I was a bit apprehensive myself. We had been told earlier in the week Tate should avoid popcorn as he has just gotten braces on his bottom teeth. Tate was not happy about this news and had been telling me all week the orthodontist must have been mistaken. But we went to a favorite restaurant before the movie, got some m&ms, and a bottle of water, and settled into our seats without incident over the missing bucket of popcorn.

The first five minutes of the movie were brilliant. Absolutely brilliant. The writers and animators illustrated a baby’s first feelings and memories and how they are stored away. They took a very complex and abstract idea and made it simple and clear. I loved it. We were introduced to the emotions of a girl named Riley. There was Joy, Sadness, Anger, Fear, and Disgust. Each character was well defined for the targeted audience of children. The characters sat behind a control panel and used the controls to react to the things happening to Riley throughout her day. They collaborated to decide which of the emotions should use the controls and help Riley to react.

The moral of this kids’ movie was a credible message for adults. I cannot always find a real solid plot in animated movies but this one was pretty clear to me. And I think it was a good one for parents to think about. The character Joy went to great lengths to help Riley avoid Sadness and be happy all the time. Riley’s parents unknowingly had pressured her to be “their happy girl” so Riley tried hard to put on a front even when she needed to be something other than happy. The premise of the movie was that Sadness is an important emotion, and one we cannot always avoid. Sometimes our children have to be sad. We cannot shelter ourselves or our children from every sad experience out there. And we cannot ask our children to deny their genuine feelings of sadness so we will not be inconvenienced either. I understood the message to be that sometimes after a sad experience we can find happiness we would not have otherwise found. Without sadness there would be no joy.

We were exposed to personifications of other characters’ emotions as well. If you go to see the movie, be sure and stay until the credits roll. It is then you will see Joy, Sadness, Anger, Fear, and Disgust as illustrated for Riley’s teacher, a dog, a cat, a clown, and a few of the other people in Riley’s life. This was another magnificent part of the movie for me. Every character had the same five emotions that were almost identical in appearance. I began to ponder at that point, what would it look like if I were able to illustrate those five emotions for Tate in the same way they had done in this movie? Joy would sit at Tate’s control panel and giggle for long periods of time while everyone around him wondered why. Sadness would be very confused, underdeveloped and never able to convince Tate to cry, while Anger would be able to produce tears when he was provoked. Disgust would be overactive. Almost every food the rest of us eat would cause that character to recoil and gag. Smells other people barely notice would be a problem for Disgust too. Fear would have to be depicted as a hyperactive character who was extremely neurotic for Tate I think. He would always be trying to grab the controls from the other emotions. If I were able to personify Tate’s emotions I think I’d add a sixth character. He would be a sort of big brother to Fear. The sixth character would be named Anxiety (or Stress). Anxiety would tower above the other five and be a giant among them. Anxiety would have some massive muscles and would push the other emotions around. He would constantly be pushing his smaller brother Fear to talk louder. He would silence Joy anytime he got a chance. Anxiety would be a tyrant.

Even during the movie Tate had been so excited to see, his anxiety was ready to suck some of the joy right out of the experience for him. During one scene, Tate became stressed when Joy, Sadness, and another character were trying desperately to find their way back to headquarters. Tate became restless and said to me, “Nothing to worry about. Stay calm. They are going to save Riley.” Tate often reassures himself when he is anxious by offering support to me. Another time, Riley’s dad got stern with her and frowned after she had misbehaved. Tate became nervous and leaned over to ask me, “Her dad still loves her, right?” I assured him that dads still love their kids even when they are unhappy.” I know Tate struggles to understand these kinds of things and has always been nervous when someone speaks to him seriously about anything. He needs people to smile at him, even if they are explaining something quite serious or speaking to him about danger. Tate seems to believe Joy is equivalent to love while Anger or Sadness cannot be. After the movie I took the opportunity to talk with Tate about these things. I had hoped the movie would be a real teaching tool for us and I believe it was. I would highly recommend this movie to the autism community. Disney did a good job with this one. 

If you liked this post you might like to read about the anxiety Toy Story caused for a while. Woody and his hat were a big thing at our house when Tate was younger. Here's the link:  Unusual Attachments