Autism action comes to you: Guest column by Noah McSweeney


Courtesy Noah McSweeney

SRJC student Noah McSweeney writes by using a letterboard with letters that he can point at to spell words his communication partner can write down. Using this format in his SRJC writing classes, McSweeney has learned to write long, in-depth essays and now collaborates with other “spellers” to write songs and poetry.

Noah McSweeney, Special to The Oak Leaf

I am giving myself lots of compassion these days to support my mental health. Today I told myself how far I have come and that I am capable of writing this article. Writing is challenging when I have so many competing ideas and thoughts. It takes strong practice and sheer willpower to control the distractions that fragment my consciousness. I need a communication partner to hold the letterboard I am pointing on to write these words. That person acts as an anchor to help me stay focused, but the words are mine alone. I have many thoughts about subjects of all kinds, but getting them out through speech is impossible. 

Let me explain my way of finding my voice. Unlike many with the same diagnosis of autism, I have the ability to speak. The words I use, however, often leave my lips without my consent. I have to concentrate to make my words match my thoughts. Even so, my mouth keeps interrupting my flow by talking about flashlights and clocks. These words are what I call “miming things” – unbidden words that escape my lips. They have a practiced pathway in my autistic brain, a motor loop. It’s part of apraxia or a brain-body disconnect. For instance, if I met you on campus I might want to ask “How are you doing?” Instead, I might say a miming thing like “I want to go to the park to swing.” 

Sometimes a thought gets stuck in my mind and I cannot stop it. It’s like my brain is being hijacked by an alien. Then all my energy is focused on that thought. Today while writing this, my dad left our car out of the garage. Since my autistic brain loves order, and this is out of order, my stress level skyrockets. My brain freezes and all ability to reason leaves me. I take long, deep breaths to help to stop the loop and break the cycle. The breathing stimulates my parasympathetic nervous system, which calms me. This is opposed to the sympathetic nervous system, which fuels my stress response. Today I imagined myself placing kind words in the sky to come back to my task. I tell myself that I am liked and loved and intelligent.

Last semester I worked very hard in doing all the work for English 1A. I had to study nearly every day. Since I write by pointing to letters on an alphabet board, it requires some steady control of my concentration and stamina. Many times I wanted to quit, but my family encouraged me to persevere and keep trying. 

Dr. Oz, my incredible teacher, had high expectations and gave me hopeful feedback on my assignments. I learned so much about the essay format. I am very proud of writing long essays and reporting on videos, which are never easy for me to watch. I used audiobooks since my eyes don’t track well for reading. I had the option for extended time on assignments, but rarely used it; otherwise, I would have fallen far behind. 

I want to make friends and do things with them like go to a concert, where talking isn’t a priority. I have a new friend who also spells to communicate and sometimes we hang out. The autistic spelling community is growing here and all over the world. I collaborate on song lyrics with a group of spellers. I love our song title, “Intelligence is Invisible,” because it’s true. Autistic spellers are underestimated because our communication is different. My poem, “Billiard Ball Blues,” is being set to music by a composer at Miami University. 

I make it some days without too much angst, but most days my social anxiety wreaks havoc. Have you ever struggled to make your mouth obey your mind? If so, I might like to meet you. Having others who get you is necessary. 

Autism Awareness is not enough; acceptance of differences and action to include us is paramount. To support our success in college, please include us. If you would like a mighty friend, tons of love will come to you. Presume we are competent: no matter how our exterior presents, our insides are the same as yours. 

Tons of kind thoughts roaming through the night sky calm me into submission.

If you gaze into the night sky 

Time stands still 

Isolating my mind’s eye

Love is the driving force 

Not opening yourself to take it in

Stops you from feeling it 

We really need to feel it.