How often have you Aspies experienced professionals such as therapists or teachers who want to normalize you? Before people say anything, I know that not all therapists are out there to magically make us into “normal” people. I recently read theater coach Elaine Hall’s book “Now I See The Moon”. It described how life with her son Neal has changed her perspective of Autism greatly. Autism and Asperger’s Syndrome are different in many ways, but I can relate to the feelings described in her memoir. Neal is a non verbal Autistic child, which means he cannot speak. It can be a real challenge to raise a non verbal Autistic child. This is because they have been known to throw tantrums when they go into something called sensory overload. He was adopted from an orphanage in Russia. It takes education and compassion to raise a child with any type of Autistic Spectrum Disorder.
Dr. Barry Schwartz is an American Psychologist. He is the Dorwin Cartwright professor of social theory and social action at Swathmore College in Pennsylvania. While psychology is a controversial topic in the Autism and Asperger’s communities, he gave a lecture on TED that made some very good points about our loss of wisdom. He opened his lecture with a job description of a hospital janitor. The description basically said you keep the entire building cleaned and maintained. However, he brought up a statement that most people would not think about if they were to apply for that employment position. A job description for a janitor does not cover any skills regarding how to coöperate with and serve other people. Elaine Hall encountered one of these janitors when she was taking Neal to a gymnastics class for special needs students. She walked into the gym, and saw a guy standing on top of a ladder in the middle of the floor. She thought nothing of it until she saw the man had a drill in his hand. She politely asked him if he could finish the drilling later. Being the thoughtful janitor he was, he responded “I’m almost done”. He immediately turned around and started drilling again. The sound of the drill causes Neal to “go into a convulsion“, as it said in the book. Elaine asks the man to stop drilling once again, and he completely ignores her. As Neal continues to cover his ears and scream, she screams “stop the f***ing drilling!” The man looks, see’s Neal’s meltdown and says “I’m almost done!” Then he continues drilling. She gives up and decides to take Neal home. The man ruined what was going to be an exciting new experience for her son.
Autism is an invisible disorder on the outside. That simply means the child’s physical appearance is normal, but their mannerism can seem to be the complete opposite of normal to people. During “phase two” of the book, Elaine described the day she and Neal took a trip to Maryland to meet his relatives for the first time. One of his cousins gave him matchbox cars, and he went off by himself and started stacking them on top of each other. His cousins were very frustrated because Neal wouldn’t play with them. Instead of playing with them, he would follow them around. This bothered his one cousin His one cousin Kira commented to his aunt “Mom, I like our other cousin Brandon better!” They had absolutely no idea how to interact with him. This is also true with people like me who have Asperger’s Syndrome. I enjoyed talking about fans, school buses and fire alarms when I was growing up. I have found that children with Asperger’s often like to use their “obsession” as an escape from stress. He really didn’t know how to interact with other children. The fact that he followed his cousins around could have meant that he was at least interested in them.
Traditional therapists did not work for Neal. They didn’t work for me either. Anytime he would flap his hands, the therapist would tell him “quiet hands”! He would hold his hands on his ears instead of sitting still. The therapists were obviously not impressed by that. They would immediately tell him “No Neal, put your hands down!” Most Autistic people cover their ears when they are overwhelmed by loud noises. So, Neal’s brain told him to put his hands over his ears when the therapist would say “quiet hands”. Elaine took a different approach to helping Neal become aware of his hand flapping and spinning in circles. If Neal needed to flap his hands, she would flap hands with him. They would pretend they were birds flying around. There was one situation in the book where Neal was walking down the street, and he liked to look at the shiny hubcaps on the parked cars. She tried to convince him to keep going, but he had a meltdown. Elaine then joined him in staring at the hubcaps. A few seconds past, and they walked on. He never stared at a hubcap again. She helped Neal become aware of his behaviors by entering into his world. As I said, Autistic people use their obsessive behaviors as a way to relieve stress from over-stimulation. Elaine hired theater people to work with Neal and they naturally thought outside the box.
We had a student two summers ago at the Computing Workshop who did this when he was overly stimulated. He had severe non verbal Autism and he also had Down Syndrome. He loved to twirl and shake bead necklaces that people would throw at Marti Gras parties. The mobile therapist he worked with was not very helpful. He, a Behavioral Specialist Consultant (BSC) and a Mobile Therapist (MT) were working one on one. I don’t remember exactly what they were doing, but the student became overwhelmed. He decided to walk over and play with his beads. The therapist quickly ran over, grabbed the beads and forced him to walk back to his tutor. He obviously was not happy about this, so he started making loud noises and trying to pull away from the therapist. The therapist said “I know you don’t want to do this, but it’s time to work. You have to suck it up”. He obviously had no idea what this meant. So he tried to walk over to the beads again. This kept happening three or four times, until a staff member finally insisted “why don’t we let him take a break and bring him to another room afterwords?” This therapist was just another one of the incompetent people we have working with children who have special needs. Instead of helping him, she berated him and treated him like he was bad. Therefore, he rebelled.
Besides writing a memoir about her experiences with Neal, she founded The Miracle Project. She is on the same mission that Mary Hart, the director of Computing Workshop is on. Society is mainly focused on the things Autistics can’t do. Elaine decided to teach the kids singing, dancing and poetry. She and her team wrote a musical and had the kids perform it in front of a live audience. My experiences with traditional social skills groups were not very good. They were only focused on controlling me and correcting me. If you have read my previous posts, they have described my experiences at Wesley Wonder Kids to a tea. Instead of connecting with me, they focused on teaching me appropriate social skills and reprimanding me every time I demonstrated them inappropriately. They wanted to “normalize” me. Before people say anything, I am aware that all children and teenagers need some structure. They have to know things like when it is appropriate to joke around and when it is time to be serious. They have to learn the differences between close friends, friends, acquaintances and strangers. However, we do not need “professionals” who will reprimand them because of their unusual behaviors.
I viewed the film “Autism: The Musical” which documents the Miracle Project from the first class to performance night. I don’t want to give to much of the film away, but I did enjoy watching the kids progress as the film went on. The group member that stood out to me was Wyatt. He did not enjoy being in the special education program at school, but he felt like he couldn’t relate to the students in the mainstream classrooms. He was the object of bullying and harassment in school, but the material taught to him in the special education program was very low-level. During my sophomore year at Freeport, I was put in a math class with the life skills students. There were many elementary level things we did in that class. We learned how to read a clock and tell time, count coins and of all things READ A TV GUIDE. This class was a total insult to my intelligence. I could care less because most clocks are digital, we have calculators to aide us with money, and most TV guides are digital. I can turn on my cable box, and find out what time a show will come on with a few clicks of a button. Wyatt seemed to be high functioning, but his peers and teachers in school thought he was hopeless.
While I know that Autism and Asperger’s are different in many ways, I could see myself in the book “Now I See The Moon” and the film “Autism: The Musical”. The world needs more organizations like Computing Workshop and The Miracle Project, and less social skills groups that focus on normalizing. I am through with hating myself because I am not normal, although I do experience negative emotions from time to time. However, I try my best not to let them interfere with becoming a successful person. This is why I highly recommend people to watch this book and movie. I hope you enjoyed reading my review!
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