This was an essay M wrote for his English 101 class, for his first semester of college classes – it always blows me away how his thoughts take shape. The editing process is as cooperative as we can make it, usually capitalizing (I just let him type without interrupting the flow, unless it’s 100% obvious that the next word will need a capital letter), and removing the excess adverbs which he has an unbridled love of. Bear in mind that his words reflect his experiences of being autistic in a world that doesn’t usually flex for differences.
Children had called me retard before they ran away one day at school, mortifying each watching teacher. The teachers and staff tried to awkwardly make light laughter the medicine that would soothe their consciences, though that managed only to make me deeply depressed. That horrible day had happened years before, but it was getting more difficult to focus on what I was trying to work on one September morning in 2014. I was with Miss Elizabeth in Growing Kids Therapy Center offices, which is a place that used to be a language and speech pathology therapy center. Then, their mission changed to spelling and typing to communicate.
Being treated like other autistic kids was nothing new for me, but it always had gone along with adults treating me more badly. They usually teamed up and more often than not treated me as some kind of walking doll with no thoughts or emotions or feelings. I had assumed that this was the way much of my life would happen; people thinking that I thought and felt nothing.
I am autistic and if you had seen me back then, you might have thought the same thing. My thinking really is not demonstrated by the stuff that comes out of my mouth. Because I am always singing some song from a cartoon, most people imagine that kids’ shows are all my real thinking is about. Watching those shows really feels relaxing, but they are not my whole identity. The head does not rule the body for people with my type of neurology. Really, big racing thoughts that mostly are trapped was the life I felt hindered by back then.
I am sometimes just so abruptly taken back to days like that day when those kids made their memorable remark. Sometimes the memory is triggered by a sensory experience. Sometimes it might get brought to the surface by ways that friends or family say things. In those moments, the overwhelming rush of emotions threatens to drown me as the memory is so strong that it feels like I am there, back in time. That was for the longest time the reality of life for me. Memories like being called a retard, the more I thought about it, the worse I felt. Help was not there, that was what I thought, anyway. But back in the Growing Kids Therapy Center offices, what was this thing Miss Elizabeth was trying to teach me with an alphabet printed on a laminated paper board?
I was watching the goings-on, thinking about wanting the teaching to move along faster, while my body tried to stand up and run around, and my mouth sang or screamed. About that time, she asked me a question about the thing that she was teaching and told me to spell the answer. In that moment, suddenly, effects that lingered from years of bullying took over and my body wanted to try to really fight and scream. Then Elizabeth saw my body trying to run away, and talked to me, saying that she knew I could understand everything, and that it really was hard to have a body that didn’t listen to the brain. Taking a break to regroup, I needed to think about what this crazy body of mine was trying to do. Then, watching other kids through a video system monitor, the point of this teaching now was clear. The whole thing was supposed to teach me how to communicate by spelling out each word in my head, touching one letter at a time on the letter board.
The calm that spread over me the moment I figured it out was wonderful, and then I knew that I was really going to be set free from the prison of a body that didn’t want to speak anything except baby cartoons. My thoughts had always been much deeper than anyone knew, even my mom who believed that there was more than cartoons in my head. Returning to Elizabeth, I sat next to her to try again very hard this time. Now, my body attempted the same tricks though I was wanting to stay still. Was this here not the real solution to all my thoughts and prayers that I’d had through the past twelve years of my life? In the thoughts I had had over the years, much of what I was so obsessed with had been the desperate desire to have a way to talk, and ways that I could show people that I had real thoughts and real brains.
The thoughts in my head just must get out, I told myself, and I finally was able to sit still and listen to Elizabeth and answer questions, touching each letter at a time. Teamwork in the learning process is most important, and a communication partner joins the speller in making sure that the speller remains regulated and focused. This was what my mom was desperate to learn to do for me, though it ended up being a while before she got good at that. I wanted more than just the silly songs speaking for me, more than was ever thought possible by anyone who had taken apart the basic sense of dignity I had ever had.
Abusive teachers’ actions that had been taken out on me had followed me to Herndon, Virginia that day in 2014. Through that whole weekend, in fact. I thought and heard and felt tons of awful, traumatic memories, reliving the nasty words and abuse from school teachers through many years. School had been really the most nightmarish trauma for the past several years mostly the result of one teacher, Mrs.P, who had been my special ed teacher for five years. I became in that time so depressed that I mostly dreaded school and screamed, because of bad thoughts, and wanting to reach out to share my anguish. Usually, the thought of having to act the way Mrs. P wanted me to act was enough to send me over the edge into a screaming, thrashing meltdown. This thing that we think, that autistic people should hide their traits and want to act not autistic, truly is the most damaging thing to mental wellbeing for us autistics. Most of the time, this teacher tortured me and mom had no idea, though she knew that something was not right. Because the depression I was living with was truly horrible, screaming was the only way that I could communicate.
The trip to Virginia had come just in the nick of time for me, though really, the learning process would end up taking a couple of years. This trip very much gave me some badly needed hope and a lifeline to hold onto. With Elizabeth at my side, more and more the future seemed better than it had before. What seemed to be stuck there in my thoughts was the idea that teachers would think that my spelling to communicate was my mom telling the most ridiculous made up nonsense. I think that feeling never truly has gone away.
Things were getting easier over the course of the weekend. Watching the whole process from the next room, most of what my mom could see moved her to take on the ceaseless changes to help me get to much wanted open communication. Going to meet the people at Growing Kids had been the biggest step we had taken to change my giant black meaningless existence. The thing I adore the most about Elizabeth, is in the way that she has the thought of self advocacy as the greatest goal for disabled people like me. Choosing to work with such misunderstood people is a massive thing that is really saving lives, no doubt in my mind.
Through the lesson she taught on the topic of mythology, one of the questions she asked was that if I could have a godlike power what would I think to choose? I wanted to think carefully, though the thought came kind of on its own into my mind. The power that felt right to my autistic neurology. I spelled out the word on the letterboard: invisibility. I felt a power that was not godlike, though it was far more amazing. I could spell out my own thoughts.
Teaching my mom to not let the dysregulation that was in these times nearly always happening was the hardest part. That was my mind body disconnect and my urge to run away, more often than not. Things were bad for me the night after the first session when I got dangerously dysregulated, and was screaming in the hotel room. Probably all people would see my state at a moment like that, and want to toss me in an institute where I would be pumped full of drugs, and then likely given shock treatments. Instead, the thing that my mom tried to do was to try to give me a steam bath, and stop most of the neurologic meltdown. What actually was needed, looking back, was for me to have time alone and reduction in sensory input. The thing was, that she didn’t understand that yet. Pretty much everything she tried made things worse. Then, the soothing warm water actually made me think that I wanted to try to calm down. The crazy thing about that night is that the warm water hindered and then helped.
The thing that mom thinks about that night is that she was really freaking out and acting like a crazy person. She still feels bad and apologizes that she didn’t react the right way. Really, though, that was one of the times that her love and protectiveness shined there for me to see.
When the weekend was over, we were in the state of hope and excitement that comes with new possibilities. Because of Elizabeth and the time in Herndon, a journey was started that would take me to real team work, the general ed classes I wanted to take, and three years on the cross country team. If my mom had not taken that trip with me, things would have happened in a way that are all too common for autistic people like me. I would still not know that there was a way to share writing with the world. I would still be depressed and screaming nightly. Really, though, the worst would be not having all the smart things that other people taught me once they believed I could learn. The horrible hard times of the past are in the rearview mirror.