Photo courtesy of Noah McSweeney
Have you ever tried to talk but your words came out different than you intended? Have you ever wanted to share your many ideas but could not? This is my daily conundrum. I like to rise to tell others about my experience as an unreliably speaking autistic person. I am a student who needs to spell my thoughts on a letterboard by pointing to one letter at a time. I have apraxia — a mind/body disconnect. This means it is hard to make my body do what I want. This affects not only my mouth but also my hands. I need a CRP, communication/regulation partner, to keep my mind focused and on task when I am spelling.
Apraxia is not so much fun. It has the effect of making me say things unintentionally. That confuses the people in my life. For example, I might say I want hummus tortillas every day for lunch when I really don’t. I might say I want to buy another watch when I really don’t want or need one. I have a large watch collection!
Autism is also a life-giving condition. I have some extra senses that are pretty cool. I can see colors when I hear people talk. This is called synesthesia, when my senses blend together. When I hear music with colors I love, it makes me happy. It does make TV and movie watching tough though. I like watching movies but sometimes the talking gets scrambled when I look at the actors. Maybe stopping my too-sensitive hearing from noticing each little sound in my environment would help me attend better. Sometimes I put my arms over my eyes because it stops the noise in my mind — the many thoughts that compete for my attention.
I have been taking my classes mostly online. I need to use my letterboard to participate in class. Right now my mom is my communication partner, but I don’t want to go to in-person classes with her tagging along. I want to find another person to learn to spell with me. In class it is hard when the discussion moves so quickly that I lose the thread while trying to spell my thoughts. I am getting better at it with time. Some teachers are more skilled than others in helping me be a part of the class. I also take Adapted Physical Education, which I love. It helps my body and brain work together. I really like to be around new people. Having fun with a friend is “belonging” to me.
It was not easy to learn to spell my thoughts. I could read fine but getting my hands to work was another story. I learned to point to the correct letter with practice. I have trouble with handwriting though. Typing is a skill I am working on but it is hard since it is a different visual field from my letterboard. Sometimes I enjoy reciting poems by other authors. Bike riding is my favorite activity as it calms my mind.
I want to write my life story to help other autistics know that they, too, are intelligent and can go to college with the proper support. So many times others did not think my mom was right in believing in my abilities, but she persisted in trying many new things to help me thrive. There’s a whole Spellerverse, a world of people like me who type or use letterboards to communicate. We are everywhere out there longing to be seen and heard. Autism Awareness Month should be called Autism Action Month. Rising to include those who seem different is the most important thing you can do to be an autism ally. If you see someone on campus wearing two watches it might be me, so come and say, “Hi, Noah” — I’ll have tons of gratitude!