My Autism Diagnosis at Age 21 Made Everything Come Together

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I was always told that honesty is important. So I was truthful, always. Well, apparently people don’t appreciate it when you’re honest. When you tell someone who’s being dishonest that they are, they might get angry. Especially teachers, or so I’ve learned. I would always get in trouble, but I never understood why. I was always polite as I’d learned and I was always honest as I’d learned. For a long time I just thought the problem was with me — I’m not likable, people just instantly hate me, I’m worthless. I struggled with these feelings from an early age. I changed schools, I got older, I tried new “tricks” to get in line. I did anything I could think of to please everybody. But people, both children and adults, seemed to take an instant disliking to me.

I didn’t understand other kids. I didn’t understand why they would be so loud or move so much. I hated games like “tag”; the touching made me feel uncomfortable. They’d say I was a sore loser but it wasn’t the being “tagged” that I disliked, it was the touch that came along with it. And I didn’t like the way everybody would move in an unpredictable way. I hated the shouting and the yelling that came along with it. In every way, other children were like aliens to me. I didn’t understand what they liked to talk about, how they liked to play, why they moved so much, the kind of toys they wanted for Christmas. Why they wouldn’t listen to their parents and our teachers. Because I always did what I was told, literally. Which in my experience got me in more trouble, with peers as well as adults. And that’s even more confusing.

I have autism spectrum disorder (ASD). After having quite a bumpy ride in my youth, I finally got the diagnosis that made everything come together at age 21. Now I’m 25 and it might sound weird to some, but I’m happy with my diagnosis. For such a long time there have been so many things that confused me or enraged me or made me feel uncomfortable in any other way. But I never understood those feelings, I couldn’t handle them, couldn’t channel them. So I got in trouble. I got in trouble a lot. That’s why, at an early age, I began struggling with the feeling that I didn’t want to live anymore. I told my mother for the first time when I was about 5, but when I saw her reaction, I decided not to mention it again. My parents are very important to me; for a very long time they have felt like the only true friends I had. I could say anything to them and they would understand. But she didn’t understand this, so I shut it away.

But it never left me. Even now I struggle with suicidal thoughts sometimes. I’ve had an eating disorder in my early 20s. I’ve struggled with anxiety attacks. There was a period that I’d self-harm as a way of coping, as a way of stimming. But with my diagnosis came understanding. Now I know who I am, why I do the things I do. And I have learned so much in these last couple of years. I always like to describe it as a “playbook” I have in my brain. I need this especially for social situations. “If A, then B. If not A, then C.” It may take me a while, but I’ll get you an appropriate response eventually. Most of the time. And when I don’t, I don’t. At least I won’t beat myself up over it.

It can be hard being an adult with ASD. People don’t believe me when I tell them. They think people with ASD are aggressive or anti-social. They think a lot. But they don’t think I could have it. That’s why I don’t like to tell people. Dealing with the comments of disbelief. I don’t want to have to validate my ASD. So I shut my mouth and deal with life the way I do. Even though I feel this might help keep the stigma, the misunderstanding, the disbelief in place. So yes, I’m sorry for not breaking through the ignorance. I’m sorry for not speaking up.

People will have to accept me the way I am, with or without knowing about my ASD.

If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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Thinkstock image by Thomas_Zsebok_Images

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Purrs for Autism Pairs Kids With Autism With Kittens for Social Play

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Working with the Hermitage No Kill Cat Shelter, the Autism Society of Southern Arizona began offering a cat therapy program, Purrs for Autism, designed for children on the spectrum.

Read the full version of Purrs for Autism Pairs Kids With Autism With Kittens for Social Play.

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Spectrum Toy Store Opens in Chicago for Children on the Autism Spectrum

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Based in Chicago, Spectrum Toy Store is the first toy store in Illinois, and one of several in the U.S., designed for children with developmental disabilities and autism.

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Microsoft to Host Autism @ Work Virtual Job Fair for People on the Autism Spectrum

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As part of Autism Awareness Month, Microsoft is hosting the first Autism @ Work virtual career fair for people on the autism spectrum. The job fair is part of the second annual Autism @ Work Summit held in Palo Alto, California.

The free virtual career fair will connect candidates on the autism spectrum with companies including AT&T, JP Morgan Chase, EY, Hewlett Packard Enterprise’s Dandelion Program, Ford, NCR, SAP and Microsoft. As part of the career fair, LinkedIn will hold two virtual sessions to help candidates learn how to market themselves on the platform.

“The vast majority of people with autism are either unemployed or underemployed, leaving a large pool of untapped talent. If we work together, we can help make a difference,” Neil Barnett, director of inclusive hiring and accessibility at Microsoft, wrote on the company’s blog. “At Microsoft, we see disability as a strength. While we are early in our journey, we are dedicated to growing our program as we listen and learn from the broader community.”

The Autism @ Work event is just one way Microsoft hopes to engage with the autism workforce. Two years ago, the company launched its Autism Hiring Program, which allows qualified candidates to attend a weeklong hiring academy as a nontraditional way of applying for full-time positions at Microsoft.

The virtual job fair will be held on Thursday, April 13 from 12 p.m. to 2 p.m. PST. Those interested in attending can sign-up on Microsoft’s website.

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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.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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How a High School Musical Gave My Autistic Son a Stage

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This was the toddler who could not wear hats or mittens and who struggled with the change of seasons because that meant wearing different or new clothes. The little boy who wore the same doctor’s costume (shirt only) for three Halloweens in a row because costumes and change were terrifying.

This was the elementary student who sat alone at lunch and stood by the door at recess afraid of thunderstorms, bugs and the possibility of an ill-fated social encounter. This was the middle schooler who almost didn’t audition for Chambers Singers because it was new and taking risks was difficult for him to handle. The middle schooler who couldn’t wear cargo shorts and khaki pants like other kids because his body just wouldn’t allow it. This was a new high school freshman who felt like he was invisible and that no one knew he existed within the walls of his high school.

This is a teenager who still worries about taking risks (because sometimes things don’t go as you plan), but overcame that worry and took a risk by auditioning for his high school musical where he has never danced a step in his life. A teenager who once felt like he didn’t belong yet now declares his fellow cast members family.” A teenager who told his directors and his parents that he has “never felt so confident and proud of himself in his entire life” as he did tonight on that stage taking risks.

This is my autistic son.

Crushing stereotypes, destroying fallacies, proving “experts” wrong and showing every single person on that stage and in that audience the real meaning behind “different, not less.”

The most important person he proved that to, was himself.

The lady clinging to this teenager is his mother. A mother who felt her face would crack from smiling every time he walked onto that stage. A mother who remembers the toddler who struggled with change, the little boy who was so worried and anxious, the middle schooler who wanted to find his place, and the new freshman who felt so isolated. A mother who now sees a teenager demonstrating confidence, pride and joy in a way the two of them once only dreamed about, by taking a risk, by stepping way outside his comfort zone and by believing in himself.

Mother and son hugging, with son in costume from school play

Editor’s note: This story has been published with permission from the author’s son.

Follow this journey on The AWEnesty of Autism.

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