Ask a Self-Advocate: How did you find out 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 and How I Was Told

I found out about my disability when I was 17. My mom was trying to explain autism to my dad and I heard my name in the conversation. Curious, I asked my mom what she was talking about and she told me that I had autism. At that time, my disability was called Asperger’s Syndrome, but now it is referred to as being on the autism spectrum. My mom told me that having autism was not a bad thing and she did not think of me as being disabled, but rather as being “differently abled.” That means that I can do anything a non-autistic person can do, but I might just do it a little differently and need extra support. She gave specific examples of how autism affected me. She said that there was nothing wrong with me and I am fine just the way I am. She said that I always had autism and knowing about it does not change who I am or how I should think about myself. As a result, I did not worry about or obsess over having a disability.

When to Inform a Young Person of Their Disability

I suggest that a person be told that they have a disability sometime before they turn 18, the age when a person becomes a legal adult. An adult needs to understand their unique strengths and weaknesses to succeed in life. If a person is not told that they have a disability by this time, they might not understand the reason why certain things are harder for them. For instance, my disability affects my fine motor skills, making it hard for me to tie my shoes. Before knowing that I had autism, I became very frustrated when I tried to tie my shoelaces because I did well and was in advanced placement classes, but could not perform this supposedly simple task. Finding out that I had autism helped me realize that it was not my fault that I was having this difficulty and that I just had to keep trying.

Additionally, a person should definitely know about their disability before they enroll in college, get a job, and/or live on their own. This is just in case they need accommodations from professors, supervisors, or landlords. A person can only ask for reasonable accommodations after they disclose their disability.

Furthermore, if a student is invited to their IEP team meeting when they turn 16 (14 in Massachusetts), then this might be a good time to tell them about their disability because IEPs are only written for students with disabilities and the goals and objectives are catered to the student’s specific disability needs.

How to Inform a Young Person of Their Disability

I suggest that an adult explain the disability as my mom did to me. They have to explain the disability slowly and carefully and give concrete examples of how it affects the person. It may also be helpful to provide some information to read about the disability. The adult should emphasize that there is nothing wrong with the person and that they can do anything they want to do in life despite having a disability. The person needs to know that their disability does not prevent them from following their dreams and achieving their goals.

The young person will probably have some questions. I suggest that the adult try to answer the questions as best they can. If they cannot answer a question, then they should find someone who can. It will take some time for a person to fully understand their disability. The person might keep asking questions as they learn new information about their disability. The adult should not get frustrated by all of the questions because the person just wants to know themselves better. The young person and adult will continue to learn about the disability together. My mom and I are still learning new things about autism today.

In my next blog, I will talk about how I felt when I learned that I had a disability.