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Attending World Autism Awareness Day at the United Nations as a Young Person With Autism

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My name is Tom Bak, and I am 17 years old. I was diagnosed with autism when I was 3. On March 31, I attended World Autism Awareness Day at the United Nations. The theme for World Autism Awareness Day 2017 was autonomy and self-determination for people with autism.

The Keynote Address was given by Professor Simon Baron-Cohen, the Director of the Autism Research Centre at the University of Cambridge in the U.K. I especially appreciated Professor Baron-Cohen’s statements about his experiences in working with people with autism. He shared a lot of details and facts. One detail I was glad he included was comorbid conditions, such as epilepsy. This is especially important to me because I have epilepsy and it affects my life as much as my autism does. I was glad to see more attention paid to comorbid conditions because they can be common among people with autism like me.

Professor Baron-Cohen also spoke about exclusion of people with autism from schools, from employment, and from doing fun things like going to the movies, which affects their quality of life. I think we can include people with autism in the broader community by offering greater acceptance. Professor Baron-Cohen also addressed suicide rates in the autism community. I felt saddened that suicide rates were higher for people with autism. I wonder if building acceptance of autism could possibly reduce suicide rates. If so, we can and for this reason alone should work on building acceptance of people with autism.

A major topic of the conference involved the discussion of supported versus substituted decision-making. I thought a lot about this discussion because I’m going to be 18 this year and I want to be able to make decisions for myself. However I have friends who have a really hard time doing things for themselves and communicating their choices. Professor Theresia Degener, Vice Chairperson of the UN Committee on the Rights of Persons with Disabilities, talked about a greater need for autonomy and independence for people with autism. I think that if we make decisions for somebody, we have to be careful to protect and ensure their equal rights. I believe this is one of the most complicated issues facing the autism community. To better understand decision-making in people with autism who can’t communicate a choice, we should learn more about what we can do better to understand them.

Another panel topic was relationships, including friendship. Daniel Emig, a self-advocate and Rooster Ranch Leader from the Autism Housing Network, spoke about his childhood and how he felt isolated when he didn’t have a connection to friendships. It made me realize how important my friends are to me. Mr. Emig’s words about friendship being important reminded me of what Professor Baron-Cohen said about exclusion of people with autism. Mr. Emig discussed his personal barriers where there wasn’t a lot of acceptance for him. Mr. Emig and Professor Baron-Cohen said that there are a lot of barriers for adults with autism like exclusion from the community and the workplace. It made me think that if communities were more accepting, more people with autism could get employment and have relationships. I believe relationships are another important area where acceptance matters for people with autism.

Noah McCourt, a former candidate for Waconia City Council, Minnesota, was part of the panel on Training and Employment. He is also a self-advocate for autism. Mr. McCourt spoke about how his opponents used the fact that he has autism in an attempt to damage his campaign for City Council. I believe that his opponents using his autism against him during the campaign was wrong. If he decides to run for office in the future, his autism should be accepted, not used against him. He said that he plans to run for office again in 2018, and I hope he will win.

I had an excellent experience at World Autism Awareness Day at the United Nations. While I was there, I learned one thing: we have made a lot of progress in autism acceptance, but we still have a lot of work to do for people with autism to be more fully included in their own decision-making, establishing and making social connections, and even entering careers in politics. My hope for next year is that more people with autism will be present at World Autism Awareness Day.

Tom at World Autism Awareness Day 2017 at the United Nations, standing in front of tables with microphones and the stage in the background
Tom at World Autism Awareness Day 2017 at the United Nations

If you or someone you know needs help, visit our suicide prevention resources page.

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Originally published: April 11, 2017
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