Written by Lucas John for the Autistic Self Advocacy Network
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My name is Lucas John. To see me many would not assume I am a college student, a highly intelligent and thoughtful person, or someone who aspires to create great change in the world. This is because I have autism and apraxia. These two don’t always go together, but they have high rates of comorbidity, manifesting in many different ways for different bodies. In my body what is seen on the outside looks wild. My voice sounds loud and scripted words are spoken repetitively and counter to what I truly wish to communicate.
Apraxia is a neuromotor condition that makes it difficult for one to control fine and gross motor movements. So any emotion might send my feet running, any stimulus might get my voice shouting, and although I may intend to walk to a chair to sit down, I may need coaching to get my body there. All this to say, I need support in every area of my life. I type to communicate as my voice cannot and I need someone with me to help my body remain regulated enough to do so and to provide motor coaching to get me through the day. Being a college student is difficult for anyone, but I often feel alone in my struggles. I have trouble with the regulation it takes to complete my studies, much less to take the time to form deeply desired social connections. Having support is essential. I have a communication regulation partner that accompanies me to my classes and assists me with studying.
My deepest desire is to create a bridge of connection and understanding with those I meet. With my many complexities it takes time and patience to get to know the true me. One way I have been making inroads is with professors, the impact that an understanding professor can make has recently become incredibly clear to me and cannot be understated. When I have the opportunity to meet with professors outside of the class environment I am able to talk to them and form some understanding about who I am when not being judged by my body and then I can have faith that I am understood and trust that my professor sees me as capable. There is much comfort in being seen like that, and when I exist in those spaces my regulation is increased which decreases the way dysregulation rules my apraxic body and inhibits my ability to be a classroom participant. I still seek stronger connections with my peers but in class I have been given space to communicate the way I need. When typing on an iPad it can be difficult to naturally enter a conversation during class discussions, my professor has made a point to check with me to see if I have anything to contribute. It has been wonderful to see my peers follow this example and it has opened the doors to forming deeper social connections. This journey has been hard and the path continues to stretch long ahead but I am glad to know how far I’ve come and I look forward to finding where I go.
Lucas John is a college student and self-advocate who enjoys writing and wants to make the world a better place for those who have misunderstood disabilities. He has spoken at the Rethink Autism Conference and is everyday paving ways for students like him.