Fear, Anxiety and Autistic “Behavior”
by Judy Endow
Throughout the history of autism many have put their efforts into changing the behavior of autistic people. It is my opinion, and that of many of my autistic cohorts, that not enough effort has been made to understand and work with the autistic who is employing the behavior you wish to extinguish.
Many autistics live with a high degree of fear and/or anxiety. We have sensory systems that often do not serve us well, delivering information too big, too small or distorted. The way our neurology processes sensory information is often delayed and/or filled with reverberation. Many of us have a thinking style that is literal, concrete and visual. To complicate everyday life, none of these things are stable. We cannot predict from day to day our experience of the sensory impacts from the world around us along with our ability to take in and process information from the people in that world.
This is the platform that supports communication. For neuro majority folks it works rather fluidly. In fact, I am told they don’t even consciously think of these things! For autistics it is quite different. Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety.
Try On a Tiny Bit of Autism: Imagine your TV to be on all day and both the channel and the volume were entirely random and not in your control. The volume might be nothing or so loud as to be painful. You do not know when it will change. The TV is with you wherever you go. When you are working you are expected to relegate it to unimportant background noise even if it is so loud as to be painful. You never know if you will be interested in the TV show playing and if you are interested, chances are, the TV channel will change before the show is finished. When you are not actually supposed to be paying attention to this TV, like when you are at school or work, you are not able to turn it off.
By now, you may be feeling a bit anxious. If this unpredictable experience occurred every day you might become fearful. Over time, your inability to control the sensory assault of the environment around you may become depressing. It would be understandable if you experience anxiety, fear or depression in response to this unpredictable TV. Now imagine this experience in all your sensory systems – not just auditory and not with only one auditory agent – the TV. This is often the autistic experience – but not always – because we can never predict.
Now that you have vicariously tried on a tiny aspect of autistic experience, it may be easy for you to imagine that you might develop some ways to cope with this constant, but unpredictable daily TV experience. Some of you might try to hide from the TV. Others might develop a humming noise to drown out the TV sound. A few of you would become so exasperated you might scream, throw something or try to hit a person who repeatedly tries to reason with you. Your behaviors would certainly annoy those around you. After all, they are not experiencing the TV like you are. It is just background noise to them. They really are not even aware of this TV most of the time. Because their experience of this TV is so different from your experience, they have no idea that your behaviors are the best solutions you have come up with to cope with the problem of this TV! Instead, they want to extinguish your behaviors so you might better fit in with the other students at school or employees in your workplace (if you are fortunate enough to have a job).
Autistic behaviors are solutions to the problems we experience. The behavior may not fit well into a classroom, the home, community or place of employment, but it is a solution. Even so, it does not work well for autistics when you take away our solutions even if you can rationalize why it might be a good thing to extinguish a particular behavior. In fact, if you take away our one and only solution to a particular problem, we will find another solution. We have to because the problem is still there.
Instead of trying to extinguish our behaviors here are a few helpful ideas to try instead:
Give the person credit for solving a problem.
Jack, a student I recently worked with hummed or muttered a script aloud so often that it was distracting to others. When I asked if he knew why his teacher wanted me to meet with him he said, “I tick people off. She wants me to stop.” I told Jack I thought he was smart. He figured out things for himself. He hummed and scripted for a good reason or he wouldn’t be doing it. I drew it out using cartooning, putting in our words.
Join with the person to expand his solution repertoire.
I drew another cartoon frame with Jack humming and three other students with thought bubbles. Amory’s thought bubble said, “I can’t concentrate. I wish Jack would stop humming.” Jessica and Lilly also contributed to the thought bubbles.
Jack wanted friends so I gave him the information that when he makes noise kids feel frustrated or annoyed because they cannot concentrate. This makes it less likely kids will want to be friends with him.
We started a list called “Humming Replacement Possibilities.” I told Jack he was smart to figure out humming so I knew he could figure out other things and that I would do what I could to add ideas. The ideas we brainstormed were put to the test – actually rated by Jack on a 1-5 scale from not at all helpful (1) to more helpful than humming (5). After four weeks Jack had discovered several helpful strategies to use. The function of Jack’s humming was to block out environmental noises (mainly the sound from fluorescent lights and furnace running). The function of humming was discovered by looking at the solutions that worked best for Jack – turning off the lights, using noise cancelation headphones, listening to iTunes water fall music via ear buds.
Celebrate success, underlining self-determination and self-advocacy.
Most of the time success comes after hard work. It is not easy to expand behavior solution repertoires. When progress is made acknowledge and celebrate. Underline the aspects of self-advocacy and self-determination. Knowing we can decide and figure out things in a way that helps us get what we want (friends and completing school work in Jack’s case) and gives us options to live more comfortably is a powerful thing. Self-determination and self-advocacy are important skills for all people and autistics often need to intentionally learn, think about and employ such skills.
In my life, as an autistic, I have had the privilege of having some good people along the way who worked with me, not on me. These were the people and the circumstances that changed my life for the better. Today I try to be that person who joins with, who becomes a catalyst for others getting where they want to go in life. And when that happens in my life or in the lives of others, we celebrate together, knowing the future has more possibilities because we have once again experienced our potential to figure it out!
BOOKS AND DVD BY JUDY ENDOW
Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.