I’m going to detail some of the struggles I went through as a child. Please do not assume that I am speaking for all autistics. I hope that I can shed light on some of my struggles in a way that helps others understand, but am in no way experiencing life for anyone but myself.
This is a little bit of a tricky post, psychologists worldwide have opposing viewpoints on this. (surprise, psychologists can not seem to agree). I’d like to remind everyone I am not a doctor or psychologist, just someone who lives with varying abilities. I will start out with the most commonly used definition. “Selective Mutism, is a rare childhood anxiety disorder in which a child is unable to speak in certain situations or to certain people. It is not a form of shyness, though it may be thought of as extreme timidity. Nor is it an intentional refusal to speak, though it may be perceived that way. Symptoms and co-existing conditions can vary from individual to individual, as can treatment options”.
My experiences with selective mutism were mostly in two situations. At home if I had done something my parents did not like, and at school being expected to speak in front of the class, or confronted by a group of kids during recess. Although the reasons for the mutism seemed very different, my mind was reacting to the situations in the same manner.
At home my mutism was often a source of great frustration for my parents. At this stage in my life, I feel a huge amount of pity for them. Some of my earliest memories are of my mom, begging me, crying, “Please, tell us what is wrong, we can’t help you if you don’t talk!” I would catch a sob in my throat in response, hiding my face, tears streaming down. Sometimes I would point or gesture, of course this was not real sign language so rarely did it help when I would point in my parents faces. Once in a great while a whimper would escape. Mostly there was a painful lump in my throat I was unable to break into words.
It feels to me like I have all the words I’ve ever wanted to say stuck in one giant cement ball in my throat. Trying to force myself to try and talk felt like i was being physically choked.
At school I experienced the same physical symptoms, whether I had raised my hand to answer or was called on without notice. I would clam up and be unable to answer. This was especially frustrating for me for several reasons, I always knew I had the right answer, and I could not stand the other kids giving wrong answers, wasting class time I could be using to read. I still felt ashamed and embarrassed because kids would tease me for being “dumb”, when I was likely smarter than most of the other students. I have nearly stopped doing this, in extreme situations I still find myself unable to speak.
Oh my, running away… Which instance do I start? In second grade my parents felt they had no choice after a lice epidemic at my school and shaved my head. I ran into the alley behind our house and hid for 3 hours. I was inside a bush crying because my head felt cold, and I didn’t like the change. I thought if I left, the feelings would leave too.
I would get upset in class and when I felt like I needed to cry, or pace, I would ask for the bathroom pass. Often I was brought back to class after wandering, (okay, maybe sneaking) into the library and just sitting for however long I could get away with it. I ran away from friends houses to my home often. I ran away from my grandparents homes. I never told anyone if I could manage my escape without it. I ran away from field trips in high school.
I had been placed in a special education class for disruptive or frequently truant kids. This was a self paced class and we were treated to frequent field trips to encourage us to attend class. We attended the Portland Art Museum, I followed the trip for awhile, but eventually found myself blissfully alone. I took my time and perused the museum, and when I was done, I left. I got on my phone and found a bus to go home, and I did. The school called my parents sometime between then and me getting home. They did not even bother to scold me. By this time they were used to me getting detentions for leaving class to read in the library or outside if the weather was nice.
I now know I often ran away because I could not handle the sensory overload I was in. sometimes I just could not stand sitting in a class I could have wrote the syllabus for. Other times I thought, I can not handle this, group projects, unorganized classes or being teased. Any time I have ever been in trouble with a teacher or adult who couldn’t catch me I ran. Poof like a ghost, I would be found when I wanted to be found. My answer to, “Where were you!” always being, “I don’t know, somewhere quiet.” I did know but was unable to articulate why I left and what brought me back.
I have never, ever liked to be hugged. I have never been comfortable, all of the adults in my life now know better than to try and hug me. One of my dear friends and I have a special one arm greeting we agreed on to relieve my anxieties about hellos and goodbyes. I do not remember tolerating being held by my parents. Often I would get the “Come on! Just one hug, you never know when we will see eachother again!” speech from extended family. I certainly remember making some family members cry because I refused and if I had the chance, you guessed it, I would run away. Forced hugs did not make me like anyone more, in fact, it made me like everyone involved in the involuntary hugging a whole lot less. I never will understand why people hug every friend and family member the don’t see frequently. The idea makes my skin crawl. The inability to escape the confines of the dreaded hug, the smells of the people, them touching me, rubbing my skin, always with the head rubbing or unwelcome kissing. One hug never seems to end with a hug when you’re a child.
I always loved and respected the adults who would let me choose how to say goodbye. If they didn’t make me hug them I would be much more likely to hug them after i got used to their smell and personality. I am still uncomfortable being touched or hugged, although I have learned that the smells and feelings are temporary and some people crave a hug as a form of expressing affection. It still bewilders me, and grosses me out if you’re not my husband or kids, but I let it happen for people who prefer to hug over spoken or gifted affection.
These are a few of the most difficult daily struggles I remember experiencing as a child. I have outgrown the majority of these experiences, my lack of diagnoses and support damaged my psyche and changed my life in irreversible ways. I am hopeful this post can put you in the shoes of a child who is experiencing these things, and give the people who experience these things I do somewhere to say, ME TOO!