World Autism Awareness Day

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    World Autism Awareness Day

    <p>World Autism Awareness Day</p>
    Community Voices
    Community Voices

    Friday, April 2!

    <p>Friday, April 2!</p>
    Community Voices

    Someone with #Autism taught me...

    <p>Someone with <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a> taught me...</p>
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    7 Ways to Support Autistic Voices During Autism Awareness Month

    April 2 is World Autism Awareness/Acceptance Day, and you might be wondering how best to participate in the day or the month, since all of April is for celebrating people on the spectrum. There are many “mainstream” ways you may have heard about or seen on social media, but supporting autistic voices go beyond trends. Many people on the spectrum advocate for more than awareness — they want acceptance, which means doing more than observing a day that essentially says this exists. The Mighty has compiled a list of ways to support autistic voices this month (and beyond). 1. Read books by autistic authors. There are plenty of books written by autistic authors to check out. Some include memoirs about life on the spectrum, like “Look Me in the Eye: My Life With Asperger’s” by John Elder Robison. Other authors write fiction about autism, such as “The State of Grace” by Rachael Lucas. Some books written by autistic authors have nothing to do with autism. Goodreads has a growing list of books written by autistic authors to help find your next book. Recently, many people in the autism community have boycotted books written by parents of autistic children. “To Siri With Love: A Mother, Her Autistic Son, and the Kindness of Machines” came under fire because the author said she wanted power of attorney over her son when he turns 18 to get him a vasectomy. A few months later, “Autism Uncensored: Pulling Back the Curtain” was also heavily criticized because autistic people said it advocated for child abuse. While parents offer different and important perspectives, a good place to start is by reading books by autistic people. This will give you a baseline of insight when you then hear stories from loved ones. 2. Tell stories of autistic people (with their permission). One way to support voices of autistic people is to help promote or tell their stories. For example, the filmmakers behind the documentary “Dina” did this by allowing the doc’s subject to tell her story and share her life. Chances are you aren’t a filmmaker, but if you know someone who is autistic and wants to share their story, ask how you could help. 3. Listen to autistic voices. You may realize you have misconceptions about autism. For example, the majority of people in the autism community use identity-first language. This means using phrasing such as “autistic person” instead of people-first language like “person with autism.” A lot of able-bodied people do not understand this and may go as far as telling an autistic person they should use person-first language — don’t do this. The best way to learn how someone likes to identify is to ask them. If you’re looking to learn more about issues related to autism, there are some hashtags to peruse through on Twitter. #ActuallyAutistic is used for people on the spectrum to talk about things they experience and to connect with one another. 4. Cast autistic actors. Hollywood has started to create movies and TV shows that have autistic characters more than ever before. There’s “Atypical” on Netflix, “The Good Doctor” on ABC, and the movie “Please Stand By.” Each of these shows has a main character on the spectrum, but that character is not played by an autistic actor, though some shows have guest stars who are on the spectrum. People in the disability community continue to point out the problem with able-bodied people playing disabled roles. Twenty percent of Americans have a disability, but less than 2 percent of characters on television have a disability, and 95 percent of those roles are played by able-bodied actors, according to the Ruderman Family Foundation. 5. Read articles from autistic individuals. Many people on the spectrum share their experiences (on The Mighty and all over the internet). People write about how autism is a part of their life, how people have treated them and what being autistic is truly like. They’ll give you amazing insight. If you need a place to get started, we’d of course recommend a few of our Mighty writers, such as Lamar Hardwick, Erin Clemens and Anita Lesko. They all write about their experiences as people on the spectrum and as autism advocates. 6. Hire autistic people if you own a business. People on the spectrum are more likely be unemployed, though many are capable of working. Despite 35 percent of 18 year-old autistic students attending college, 85 percent of college graduates are unemployed, according to Integrate, a service that connects autistic individuals to jobs. Out of those who do have a job, 79 percent are working part-time and averaging a wage of $9.11 an hour. If you have hiring capabilities or run your own business, consider hiring someone on the spectrum, especially if they have the education or expertise for the job. Chances are they’ll bring a skillset valuable to your company. 7. Donate to autistic organizations. There are autistic organizations that are run by and for people on the spectrum. One organization is the Autistic Self Advocacy Network (ASAN), which advocates for the rights and equality of autistic people. The Autism Women’s Network works to get rid of stereotypes and misinformation about autism and promotes acceptance.

    Anita Lesko

    What I Learned at the United Nations on World Autism Awareness Day

    I had the distinct honor of being invited to the United Nations Headquarters for World  Autism Awareness Day 2017. I was on a panel with four other people, and moderated by Caren Zucker, the journalist, producer and New York Times bestselling author. Our topic was dating, relationships and marriage. I shall never forget that moment as I walked up the stairs of the United Nations, so majestic with all the flags from around the world flying in the wind. I first had to go through the security check point, which was equal to that of airport security. Once out of that, I was greeted by a volunteer who was waiting to escort me to the room the event would be taking place in. Finally arriving at the location, I was in awe when I entered the great room with its stadium-style seating. I then saw my name in front of my seat. It was an extremely overwhelming experience. The event began with an exceptional presentation by world-famous autism researcher Dr. Simon Baron-Cohen. One after another highly-acclaimed individual spoke about autism and what they and their organization were doing to improve the lives and wellbeing of those on the autism spectrum. Representatives from all around the world were there. I learned firsthand the tremendous amount of work being done on a global scale to help us folks with autism. These people have devoted their lives to helping us. More and more resources are becoming available to individuals with autism and their families. This leads to better outcomes and happier, more productive and fulfilling lives. Here is the video of the whole event. I can be seen at marker 1:48:32. We want to hear your story. Become a Mighty contributor here.

    Tom Bak
    Tom Bak @tom-bak
    contributor

    Attending 2017 World Autism Awareness Day at the United Nations

    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 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 o r text “START” to 741-741 . We want to hear your story. Become a Mighty contributor here .

    Tom Bak
    Tom Bak @tom-bak
    contributor

    United Nations World Autism Awareness Day: My Experience as a Young Person With Autism

    My name is Tom. I am 16 years old and I have autism. I went to the United Nations’ World Autism Awareness Day 2016 because I wanted to learn more about global issues affecting autism. Being a part of World Autism Day at the United Nations was an excellent experience that changed my perspective about what needs to change in global attitudes toward autism. The World Autism Day conference of 2016 focused on inclusion and neurodiversity and included speakers from all over the world. The keynote presentation was given by Steve Silberman, the author of “Neuro Tribes.” One of the things that Mr. Silberman said in his keynote was that inclusion “does not mean just inviting people with autism to visit.” Mr. Silberman stated that inclusion is about ensuring we have an equal chance. I felt that this was one of the most important statements made at the conference, because it brought up the point that people with autism need to be included in a meaningful way. I was sad to hear that many people living with autism outside of the United States are subjected to mistreatment because of negative stereotypes. More than one speaker at the conference spoke about how people with autism are treated inhumanely. It hurt my heart to hear their stories. I wondered how we can change negative attitudes toward autism. When Thomas Gass, the U.N.’s Assistant Secretary-General for Policy Coordination and Inter-Agency Affairs, said during his presentation that “this is a shared vision of humanity,” it came to me. I came to believe that people with autism and their families need to be out in the open about autism. I feel living in the shadows with autism does not help us, because people cannot learn from us. I believe people are afraid of what they don’t understand. If we live in the open with our autism, we might be better understood. That has the power to change negative stereotypes. My experience as a person with autism at World Autism Awareness Day was a positive one. I believe more people with autism should have an opportunity to be a part of this event. Tom at World Autism Awareness Day 2016. The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Apple Short Film 'Dillan's Voice' Shares How Autistic Teen Dillan Barmache Uses Technology to Speak

    Dillan Barmache, a 16-year-old with autism, always had a lot he wanted to say. Now, with some assistance from his iPad, he’s sharing those thoughts with the world. In a short film released on World Autism Awareness Day called “Dillan’s Voice,” which was created by Apple to celebrate Autism Awareness Month, Barmache tells the story of how he always wanted to connect with others, but had difficulty communicating what he wanted to say. That all changed when he began using his iPad to type out his thoughts, which are then read out loud with an augmentative and alternative communication app. “Having a voice has changed everything in my life,” Barmache says in the video. “No more isolation. I can finally speak with the people that love me. I can say what I think and let them know I love them, too.” Barmache’s use of this technology first made headlines in 2014, when he  delivered a middle school graduation speech at the age of 14. Apple also released a follow-up video called “Dillan’s Path” starring Barmache, his mom Tami and his therapist/communication partner Deborah Spengler, who explain the importance of remembering that someone who isn’t making eye contact or using their voice is still an individual who deserves to be understood. “Not being able to speak isn’t the same as not having something to say,” Tami says in the video. As Barmache said in an interview with Mashable about the film, “The iPad allows me to be seen.” Watch “Dillan’s Voice” below: https://www.youtube.com/watch?v=oMN2PeFama0 And the behind-the-scenes follow up “Dillan’s Path: https://www.youtube.com/watch?v=UTx12y42Xv4

    Meghan Hanley

    World Autism Awareness Day: What This Mom Wants for Her Sons With Autism

    Do you know that World Autism Awareness Day is on April 2? On that day, you’ll be asked to “Light It Up Blue” or “Color the World” to help raise awareness for autism. How important is World Autism Awareness Day to me? Meghan’s sons. I booked my boys’ birthday party on that day. I looked at my calendar and there wasn’t a rainbow of appointments staring back at me on that day so it meant it was open. Then my girlfriend texted, “Oh, you’re so awesome having their party on that day. I bet you’re going to do something big.” I sat there for a second and had to really think about what is so special about that day. I actually had to ask! See, the thing is I didn’t book my boys’ birthday party on April 2 because I knew it was World Autism Awareness Day. We raise awareness every day no matter where we go — sometimes loudly! I talk about autism, write about autism, research autism. Hell, my van is covered in stickers to raise awareness and keep my boys safe for first responders just in case. What I’m really looking for is acceptance and understanding. I want people to understand my boys. When my son, Beast, was at the hospital, a doctor called autism a behavior disorder. And she said it as she was walking out the door. I was so shocked that I didn’t have a chance to correct her or ask her why she said that. Then I thought about it — people can be aware of autism, but they may not understand autism. I feel like every medical professional who I’ve been talking to about Beast looks at the nonverbal piece and doesn’t listen to everything I have to say about my son. Because they don’t listen to a verbal account of what’s going on with him and don’t understand all of the nonverbal language, he’s being dismissed. It’s the flip side of that coin for my other son, Bubba. That kid can talk! He will talk your ears off. That’s how he processes, controls or regulates a situation. I’ve heard it a million times that he’s smart and quirky. Not a big deal. Social communication is where he faces challenges. He’ll agree to anything and say anything if he thinks he’s in trouble. He has a hard time with executive functioning. He needs clear step-by step-instructions. He was getting punished and made an example of in school, and his self-esteem suffered because the school didn’t understand him. I want people to understand and accept my autistic boys. My boys are snowflakes that are beautiful and complex. Autism is an explanation and not an excuse. I want people to look closer, see, listen and observe. I need people to learn that my kids do certain things that may seem different, but it’s how they communicate, relate to you, express an interest, get your attention or get your love. April 2 might be World Autism Awareness Day, but every day is autism acceptance day. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.