Transition to college and beyond: A personal storyBy Paul Kotler | September 23, 2019
Paul Kotler is a nonspeaking adult with autism. He shares his personal transition story and is participating as a panelist at the Autism Speaks Transition to Adulthood Thought Leadership Summit in October, 2019. Listen to our podcast episode, "What it means to be nonverbal," featuring Paul.
My name is Paul Kotler. I’m a 31-year-old college student and advocate with autism.
Everyone with autism tends to be unique. I type my words instead of speaking out loud.
I’ve learned that transition can take a long time, so start early. There may be setbacks but keep going. My team helped me make a map of all my goals and all the steps to achieve them when I finished school at 21 and wanted to go to college. I started to emphasize my strengths. It made me more confident to make really meaningful goals that I could achieve with the right supports.
My goal was to go to college. The clear best way to do that was to get my GED since my education was not traditional. I started with a tutor who also taught a GED class. She led me to taking her class. I also had a communication assistant who attended with me and supported me for the next seven years. Anxiety was tough, but they reassured me. My teacher didn’t judge me on my sensory differences or impulsivity. She treated everyone as equals. For me, throughout my life, it has been important to have allies who will support me in achieving my goals. I passed the GED in 2011 after about seven months of preparation. It felt great.
Next I applied to a community college. I was anxious about college classes and enrolled in an online class. I really did well. My next goal was to take an in-class course. The disabilities coordinator refused even after I proved myself able to sit in a class. I was mad about the injustice with no power to control.
After 10 courses, I transferred to Widener University. Widener is completely different. I have been taking online and in-class courses. Several things have helped me in my college courses. First, my typing is slow so I have an accommodation for extra time for exams. I also request assignments in advance. For leaving the room for anxiety or sensory overload, the disabilities office changed the classroom to one where I could sit and exit from the back. This helped ease my anxiety, but I no longer need it. I introduce myself to the professors in advance by email to let them know I am autistic and a typer. I share a video of me in a project I was involved in for AT&T so they have a sense of me and the typing to communicate.
People have been very supportive at Widener. I continue to attend with the support of a communication assistant. I am now a junior majoring in psychology and am an honor student. I take one class at a time to give myself enough time to complete all the assignments and readings and prepare for quizzes and tests. This also allows me time for the advocacy work I do.
Time is the biggest challenge for me. I need to advocate for myself on a daily basis for time. It takes me a long time to type. I need to request more time for all my coursework and for preparing for presentations for my advocacy work. It requires others to be organized. It takes working together to make it possible. Class discussions are hard because the professor has moved on by the time I can type a reply. It is not meant to exclude, but it’s the nature of verbal communicators to be quick. Speakers lack the patience to slow down naturally for a typer, so the personal exchange is lost. If meaningful natural conversation is taking place, it is back and forth.
People need to understand that nonspeakers are intelligent. We understand language and if we have learned an alternate way to communicate, like typing for me, we have lots to say. The reason many of us don’t speak is that we have apraxia. This is a speech disorder that affects the ability to produce intelligible speech. I know what I want to say, but I can’t say it clearly and have to learn by many repetitions.
Another factor that interferes is overall dyspraxia. This affects the ability to do motor tasks automatically the way most people do. For example, I can intend to reach for cashew butter in the pantry but grab the rice cakes. This is not lacking understanding. I have had a lot of occupational therapy (OT) with sensory integration, and this continues to help me. Again, it involves much repetition, but it has improved my skills a lot. OT also helps me with anxiety. Anxiety is so difficult. I have an exercise program that includes the treadmill, sit ups, push-ups and planks. Exercise helps me feel calm.
OT and speech therapy are very helpful. Counseling helps me make very deliberate decisions that are well thought through, and I can talk about my feelings. I also attend a social group. Learning about making friends is important to me. The social group keeps people connected. My therapists have been so helpful to me and don’t judge me based on my sensory differences or impulsivity. It is important to advocate for supports that will help you achieve your goals.
My next goal is to live independently in the community. I am working on mapping this out now. Really the housing currently is for those with the least challenges. It is time to create housing for many like me whose behavior and lack of common skills is inconsistent with actual intelligence. This is an undertaking that could be a model, providing intensive OT, speech therapy and counseling initially to improve daily success and help me and others navigate all the different pieces of living and integrating into a community. If done intensively initially, there would be less need later on. This would allow those seen as dependent to make self-determined lives. Having this team approach would lead to many more autistics being able to do more for themselves. This would lead to fewer supports needed. Autistics who are non-speakers and usually dyspraxic are seen as incapable. This would change this perception and allow us to be contributing and valued members of the community.