Ask a Self-Advocate: How did you feel when you learned you have a disability?

This post is part of the “Ask a Self-Advocate” blog series. This series was written by Jevon Okundaye, MAC’s 2017-2018 Young Adult Leaders Fellow, who is an autistic young man. The Young Adult Leaders Fellowship provides an opportunity for young adults aged 18-26 with intellectual disabilities and/or autism to learn the professional skills needed to advocate on behalf of other youth with disabilities. “Ask a Self-Advocate” was Jevon’s final project for the Fellowship.

My suggestions are based on my own experience. I realize that what worked for me may not work for everyone else.

Finding Out

For information on how I found out about my disability, please refer to my previous blog.

Thoughts and Feelings

I felt some mixed emotions after learning that I had autism. At first, I felt surprised because this was something new that I learned about myself. To me, the word “disability” meant that I was unable to do certain things. My mom told me that I could do anything, but I might do it differently. I knew some things were harder for me than for other people. I felt a little upset that my mom kept this from me until she explained why she did. I felt a little sad that I was “different” from everyone else. I felt that certain things were always going to be hard for me. The feelings of anger and sadness come and go throughout my life as I am faced with different obstacles, but I took comfort in the fact that I had support from my family and have accomplished a lot despite my disability. These are natural emotions that are important to not keep bottled up. To manage my emotions, I talk to my mom and my psychiatrist. In the end, I felt relieved because I now understand myself better.

Questions I Had

After learning that I had a disability, I had many questions. It is good to have questions as long as they can be properly answered, but this might take some time since people are still making new discoveries about disabilities. I asked my mom if anyone else knew that I had autism. She said that our family, my doctor, and my teachers knew. She was still trying to explain it to my father though. I asked her why she did not tell me sooner. She said that she did not want me to feel different from or less capable than other kids. I asked her if I should tell people about my disability. She told me that while it is not something to be ashamed of, I do not need to tell everyone I meet about it. She said only certain people need to know and that she would tell me who needs to know and who does not need to know.

In my next blog, I will talk about how I learned to disclose my disability.