Why I Can’t Support Autism Awareness Month as an Autistic Person

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Shocking, I know. For many families with autistic children, or autistic people ourselves, this time of year is filled with families being excited for Autism Awareness Day/Month. Which is great. Good for them. If it makes more people hear about autism then I will agree that it is not a bad thing. But that does not mean I support it. When we say that we need Autism Awareness Month, we say we need a month to talk about autism. We say that our world is so incapable of understanding us that we need an entire month to teach them.

Think about it like this. Autism is classified as a developmental disorder. It causes difficulty in social communication, stimming behavior, etc. I am not even going to pretend that autism is “easy,” because it’s not easy. However, autism is not life-threatening. Look at something like Hunter’s syndrome, which causes a long list of life-threatening side effects and has a life expectancy of between 10 and 20 years. However, Hunter’s syndrome does not even have one day for recognizing and learning about it. It, along with many other diseases, get lumped into Rare Disease Day. And while that day is a great idea, it also severely limits the chances for awareness on individual rare diseases.

Let me just press this: I am not saying that we do not need a day for autism awareness. Of course we do. And I fully support it. However, what I cannot in good conscience support is an entire month for autism awareness. I can’t because I refuse to say that my struggles and my fight are greater than other people’s.

Finally, just let me say this. I support autistic people. I support our right to be allowed to live our lives, I support our ability to function in this world. But I also support and wholeheartedly agree with the people who say that autism is not something that needs to be cured or be fixed. Because I agree with them. And that is the other reason I don’t approve of this month, because it’s a month that a lot of people dedicate solely to raising money for research for a “cure” for autism. I don’t think we need a cure. I think we need acceptance. I think we need to look at each other and stop saying we are different. We need to stop and look at each other and say, “We are one. We are in this together. We will do this together.” We don’t need to change or bend. You don’t need to fix us, because we do not want to be fixed. We don’t need it. And I know I only speak for myself, but I wish everyone would stop trying to get us to be someone who we aren’t, and start letting us learn how to accept ourselves. Teach us who we are. Teach us to accept it. Please. Don’t force us to learn it for ourselves.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] 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.

Lead photo source: Thinkstock Images

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Court Takes Action Against Rec Center That Banned Autistic Boy From Locker Room

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After one mother’s 5-year-old son on the autism spectrum was banned from the women’s locker room at the Adams Butzel Recreation Center in Detroit, she sought help from the U.S. Attorneys office.

U.S. Attorney Barbara McQuade confirmed to the Detroit Free Press on Monday that the rec center has now modified its rules, which prohibited children older than 18 months from using locker rooms designated for the opposite sex.

The mother, whose name was not mentioned in the statement, asked to bring her son into the women’s locker room because he needed help with his swimsuit. But the recreation center denied her request, telling her she either needed to bring a male relative to assist the child, allow a male staff member to help the child in the men’s locker room, or visit another club.

The woman declined these options because she wanted to help her son at the recreation center closest to her home, reported local news site ClickOnDetroit.com, and she then filed a complaint with the U.S. Attorneys office.

“Parents of children with disabilities work hard to make sure that their children have the same opportunities for recreation as children without disabilities,” McQuade said in a statement to the Detroit Free Press. “Our office is committed to supporting these families by working with them to bring down barriers that may be in their children’s way.”

McQuade added that the city agreed to implement a new policy “requiring reasonable modifications to the center’s locker room policies for children with disabilities.” Children accompanied by an adult member of the opposite sex will now be allowed to change in a curtained section of the locker room designated for members of the adult’s sex, and children accompanied by an adult will also be allowed to use the lifeguards’ locker room.

Staff at the Adams Butzel Recreation Center will receive training on the new policy and their obligations under the Americans with Disabilities Act, which prohibits discrimination against people with disabilities in public accommodation, employment and transportation, among other areas.

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Virtual Google Tour Helps Autistic Kids Check Out Hospital Before They Visit

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The Birmingham Children’s Hospital in Birmingham, England, recently teamed up with Google and Autism West Midlands to create an extensive virtual tour for patients with autism and their families. It’s just like Google street view — but with a glimpse inside every door and room of the hospital.

“We know that children with autism really struggle when they come to visit us,” the hospital wrote on its Facebook page. “They get anxious and upset about unfamiliar places and this can often be very hard for the parents too.”

A view from the Birmingham Children's Hospital, which is part of an extensive virtual tour developed by Google.
Image courtesy of Google

You can drag your mouse across the screen to explore spaces, or you can use the arrow keys to digitally navigate the hospital. The hospital also provides links to 19 of its common areas if users want to search that way as well.

In addition to providing families with a tool to “familiarize themselves” with the “hospital before their visit,” the facility also has a “Sensory Garden” where patients of all abilities and needs can play and relax.

A view from the Birmingham Children's Hospital, which is part of an extensive virtual tour developed by Google.
Image courtesy of Google

To check out the virtual tour, visit the The Birmingham Children’s Hospital’s website here.

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Why I Believe It's Time to Ask for More Than Autism Awareness

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I first heard about the movement to call April “Autism Acceptance Month” instead of “Autism Awareness Month” this year, in the last few days of March. Coincidentally, it was also the time that I truly began to accept my early struggles with peer acceptance as a child with undiagnosed autism. For many years, I held onto the upset I felt around the bullying I endured beginning in second grade. We didn’t know I had autism at the time, because back then there was little awareness.

It all began when the best friend I met at age 2 moved to another state over summer vacation. I was so traumatized by the change that I refused to play with any of the other kids in the neighborhood. This upset another girl down the street, so on the first day of third grade, she managed to talk all the other kids into snubbing me. No one would talk to me the entire day. I believe it was because of my autism that I didn’t understand why, and I didn’t react the way they expected. That was the day it seemed the bullies learned I was the most fun target of them all.

I held onto that anger for years, but I let it go last week when someone posted a picture of our sixth grade class on Facebook. One of the people who commented on it was that girl from down the street. And she sent me a friend request.

In that moment, I realized that her 7-year-old self probably felt snubbed. She was probably hurting that summer because her friend was ignoring her. She had no idea how the other kids would run with it. She moved on and made new friends just like any other kid would. I was the one who was stuck in a world without awareness, without the support that, as an autism advocate, I now fight for to help the kids who have come after me.

I accepted that friend request, and in less than one week, we’ve had some amazing conversations that make me realize what life could have been like if my parents had known why I was acting that way back in the summer of ’82, and had been able to get me the proper support. I now accept that it wasn’t that little girl’s fault any more than it was my fault. It was the lack of awareness. But we have awareness now. And I agree with my peers. It’s time to ask for more than awareness. It’s time to fight for acceptance so that every child can be accepted for who they are.

Every child and adult on the autism spectrum deserves to get the support they need from family and schools. Every child deserves to be happy to go to school to learn and not be bullied. Every adult deserves to have a family and a job without having to be “in the closet” about their diagnosis. We are wired this way. Accept it.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] 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.
Lead photo source: Thinkstock Images
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Disneyland Staffer Desperate to Find Autistic Guest Who Lost This Lanyard

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Emily Gibby, an employee at Disneyland in Anaheim, California, is trying to find an autistic patron who lost a lanyard near the park last week.

One of Gibby’s colleagues found the lanyard at the Disneyland Hotel on March 24 and passed it on to Gibby, a Disney spokesperson told KTLA. The badge attached to the lanyard has a note which reads, “Hello! I am autistic, and I don’t talk much, but I would like to trade for Mickey pins!”

Gibby posted a photo of the lanyard on her Facebook page, adding that she and her co-workers decorated it with even more pins and a medallion.

Alright Cast Members I need your help! This morning during the pin release I was working, we found this red lanyard with…

Posted by Emily Fuller Gibby on Thursday, March 24, 2016

 

Gibby wrote:

Alright Cast Members I need your help! This morning during the pin release I was working, we found this red lanyard with four pins on it. It had a white note attached that said “hello I am autistic and I don’t talk much but I would like to trade for Mickey pins.” So we did what any Cast Member would naturally do.. We filled up his lanyard with Mickey pins and got him a Mickey medallion as well! But now we need everyone’s help in finding him/her!! Share this post and help us find our friend! Be on the look out! Multiple lines of business have already been contacted and informed that we have this lanyard at Pin Traders for him/her! Let’s work some magic and try to find our friend!!

Many individuals with autism have sensory issues and may grow very attached to certain objects, or parts of objects, according to The National Autistic Society.

“I have always known that people with autism have daily struggles that some of us will never realize, but recently I have learned that something as small as losing a possession could drastically change their day, week, or even their month,” Gibby wrote in a post on April 2. “Losing a small item could lead to large behavioral changes and meltdowns that can not be solved by just ‘buying a new one.’”

“With so many big things happening all around the world, it’s important to remember the little things that might be really big things to a certain person,” Gibby posted April 1.

If you have any information that might help, contact Disneyland’s lost and found department at (714) 817-2166.

h/t Huffington Post

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My Experience as a Young Person With Autism at the United Nations' World Autism Awareness Day

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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
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 [email protected] 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.

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