Why I'm Not Afraid of Public Speaking as a Person With Asperger's Syndrome

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As a self-advocate, I have done a lot of speaking engagements about my life living on the autism spectrum. I have presented at schools to students and teachers. I continue to share my story at trainings for therapeutic staff support and mobile therapists several times a year. I have even done a TEDx Talk called “The Natural Rhythm of Stimming.”

One of the most common questions I’m asked is whether or not I get nervous when I present. People tell me I’m so brave for speaking. Many are surprised when I tell them I usually don’t feel nervous, embarrassed, ashamed or anything like that. They are surprised when I tell them that speaking about my own Asperger’s syndrome experiences is easy for me. Then I explain why.

woman standing in front of screen showing powerpoint
Erin giving a speech.

When I was in school, before I was even diagnosed, I tried to ask for help. Most people just told me I was fine and moved on. This was where I really started to struggle. It was hard for me to ask for help, and to hear someone say I didn’t even need it was so frustrating. I began to back down, and give up. Why should I speak up if no one wanted to listen?

Once I received my diagnosis in 10th grade, I noticed people began to listen more. They wanted to hear what I had to say. They wanted to understand. At that point, I realized that maybe I could get across to them the things I had been trying to say before.

For me, public speaking isn’t something to be afraid of. It’s a gift. It’s my chance to finally be heard after years of being ignored, misunderstood and doubted.

As Candice Cuoco, a designer on the TV series “Project Runway,” once said, “Whether people agree with your voice or they don’t, being able to speak it is what matters.”

People are willing to listen to me. Why wouldn’t I be willing to speak?

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 [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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The Simple Question That Helped Me Advance in the Journey With My Sons With Autism

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There are so many different parts to a journey with autism. Sometimes you may think you’ve got things under control, and then it can fall apart. Sometimes you just manage to get settled and then suddenly you’re starting all over again with another child. Sometimes you think you have a strong fierce warrior momma exterior, and then you realize inside you can feel everything. Every. Single. Thing.

I wish what I’ve learned I can teach to my children so they don’t have to learn for themselves. That’s not the way this works though, is it? No matter how badly we want to protect them from pain, we can’t do everything. We can’t prevent everything.

We can’t stop peers from telling him to stop following them. We can’t help the other understand that things won’t always happen in his specific order. Most of all, we can’t help but see ourselves in them.

Parts of this road have been bumpy and jagged. I’ve felt lonely, confused, torn apart.

But just stop for one minute and think, can you let go of that?

two boys holding up rocks in driveway of house
Casey’s sons.

Can you let go of the parts that really don’t matter? For example, does it matter what other people think of you and how you manage your life and your family? Honestly, do they actually have any idea? That woman at the grocery store has no idea that you’ve been awake since 2 a.m. Again. Basically for four years straight now. The family member who thinks you’re a “tad” bit overbearing has never seen your child in the midst of a sensory meltdown, to the point of self-harm. No wonder you can scan the room for potential threats or triggers as well as a Navy Seal.

But for real, all of that? I’ve been there (frequently). I hate that I feel things so strongly sometimes. But what I have realized is that holding on to all the things I can’t change was stopping me from advancing. Literally holding me back. I need to be the best version of me so I can help them become the best versions of themselves.

I choose to let go of the fear, the anger, the pain. Of course they may come to visit, but they will not rule me. This isn’t an easy path, but so what if the road is uneven? It is a lot easier to navigate without holding onto the extra baggage.

boy with train set and jurassic world sign
One of Casey’s sons.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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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Malaysian Filmmaker’s Movie About Autism Aims to Reach Global Audience

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Redha” is a film about Danial, a 6-year-old boy with autism, and the challenges he and his parents face.

The independent motion picture was directed by Malaysian filmmaker Tunku Mona Riza, and she tells the Sun Daily that it was inspired by her close friend’s child, who has autism.

After a lengthy discussion, Riza’s friend introduced her to other parents of kids with autism, and she moved forward with production on the film.

“I want ‘Redha’ to be a movie that represents the voice of families with autistic children, and what they have gone through to bring them up,” Riza told the Daily Sun. “Almost all the scenes in ‘Redha‘ are based on true experiences.”

“Redha, the film, is not just about autism; it is about family, it is about the people we might know,” reads a brief bio on the film’s Facebook page. “It is about us.”

“The movie not only entertains you but also creates awareness about autism,” ­Shahili Abdan, the actor who plays Danial’s father, told the Daily Sun. “It tells you that no child should be discriminated against. All children deserve to be loved and cared for.”

The film was released on April 14, 2016.

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Why the Puzzle Piece Symbol for Autism Awareness Doesn't Do It for Me

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I used to love puzzles.

What a nice way to spend a lazy Sunday, going to and from a really tough puzzle and loving that feeling of satisfaction when it’s finally done. Then leaving it on the table to be admired, at least for a little bit.

I’m now the mom of a child with autism, and puzzles don’t really do it for me. I find I just don’t have the patience anymore — my patience is otherwise used for my kids.

Which brings me to that dang puzzle piece symbol for autism.

It never really bothered me before, until I really started thinking about it.

Some autism organizations use the puzzle piece symbol for autism awareness with the tag line, “Until all the pieces fit.” Well, tagline creators, I’ve got some news for you.

Those pieces? They will never all fit. That puzzle will never be completed. You never get that feeling of satisfaction upon completion.

Now before you all get riled up, hear me out.

Parenting — no matter if you parent a neurotypical child or a child like my TJ, who has autism — is a journey. There is no ending.

“Until all the pieces fit” contains the hope that eventually all those pieces, even the toughest ones, will fit into a nice, neat puzzle that you can stand back and admire.

For many of us, just as soon as we have figured out one tricky part of the puzzle, another one can pop up. Or maybe a year after we thought we had resolved an issue, it re-presents itself in a new form, maybe slightly different from its original presentation, but needs to be addressed all over again.

Parenting is fluid.

Wouldn’t it be nice if it wasn’t? Can you imagine finally finding out how that last little bugger of a puzzle piece fits into the whole picture, and you have laid before you a beautiful portrait that you have been waiting to see in its completion?

Yeah — not gonna happen.

Please, don’t get me wrong — there are plenty of amazing moments in parenting: moments of celebrating successes, solving problems, connecting to your child’s journey and life in a real and meaningful way. Joys. Sorrows. Ups and downs.

See? Fluid.

Instead of that puzzle piece, I like to picture something more like one of those desktop wave machines. Rocking back and forth, beautiful blues and greens, ebbing and flowing. And always in motion.

Without an end.

So in theory, that puzzle piece works for many, I get it. And I’m all for anything that increases autism awareness and acceptance in the world.

But for me, for my family, for my boys with unique ways of living in this world, give me a wave machine any day.

family in pool with dolphin

Follow this journey on Laughing… Like It’s My Job.

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.

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Bus Driver Arrested in Death of Hun Joon 'Paul' Lee, Autistic Student Left on Bus

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Armando Ramirez, 37, was arrested in the death of Hun Joon “Paul” Lee, a 19-year-old autistic student who was left on the bus Ramirez operated on a hot day last September in Whittier, California, reported ABC 7 News. Police confirmed the substitute driver was booked at the Whittier Police jail for dependent abuse, with bail set at $50,000.

Lee’s mother Eun Ha Lee became concerned when her son wasn’t home from the Sierra Vista Adult School on time on Sept. 12, 2015, reported KTLA. She called the police and rushed to the campus, and though staffers searching for Lee initially labeled him as “special needs,” his mother clarified that her son was autistic, nonverbal, had the mental capacity of a 3-year-old, and would not have been able to yell out for help. Lee was found in the bus’ aisle and pronounced dead at 4:33 p.m., according to a police report.

After six months of investigation and the release of a discovery document in which the company admitted the conduct of its driver was a cause of death, detectives determined there was enough evidence to arrest Ramirez. Ramirez’s arraignment is expected to be held on Friday in Bellflower Court, according to the Whittier Daily News.

Lee’s family also has a pending lawsuit against the bus company, Pupil Transportation Cooperative and the Whittier School District. PTC stated it plans to install a system on its busses requiring drivers to swipe a device to confirm the vehicle has been cleared of students.

“We are pleased that the Whittier Police Department has taken the first step to hold bus driver Armando Ramirez accountable for his role in the death of Paul Lee,” Brian Panish, the Lee family’s attorney, said in a statement to ABC 7. “We will continue to pursue justice for the Lee family and remain diligent in our fight to change bus safety policies and procedures in order to avoid a senseless tragedy like this from ever happening again.”

“My boy is a very, very precious boy,” Eun Ha Lee said in an interview with KTLA last September. “I don’t know other people, how they think about my son, but my son is perfect to me. I feel like, we are nothing. They killed my son. Technically, they killed my son.”

An arrest is made in this tragic case: Posted by Whittier Daily News on Wednesday, March 23, 2016

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What a Playdate Can Be Like for a Parent on the Autism Spectrum

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My son made a new friend. He is on the spectrum, diagnosed with PDD-NOS, anxiety disorder, ADHD and more. So it’s exciting for him, for us, to see him connect with another child his age. But at the same time, it’s difficult for me because it means I have to be friendly with the friend’s parents. I am also on the autism spectrum.

Before I go any further with my thoughts, let it be known that I like the parents. They are friendly, down to earth and they have a child with special needs of their own. So I can connect with them.

We have gotten together with them on several occasions now. Mostly at a local gym, where the boys swim and play. There is a a lot going on there. Kids screaming and splashing and laughing, lifeguards blowing shrill whistles, people walking back and forth in my vision as they pass me, the noises of it all bouncing off the walls and ceilings and echoing back into my sensory-addled mind. And of course, the parents are talking and conversing with me. It’s a sensory nightmare in the the swimming pool area. I have to really focus on what is being said to me so I can answer back appropriately.  Focusing in that kind of atmosphere is difficult for me.

Yesterday, we were invited to their house. I approached my journey to their home as I often do. First I felt the flight-or-fight kick in. My stomach was in knots, my mind filled with the what-ifs. What if they aren’t as friendly as I thought? What if they offer me food or drink I don’t like? What if I throw up or faint or embarrass myself in some way? What if I can’t get out? After all those negative thoughts, I made my plan. (I always plan; it helps me picture what will happen and how it will end.) My plan was to stay for an hour and then say we had to get home for dinner. And lastly, I told myself just do it. You have to do it, Stephanie. So in the end of all this thinking and planning, I put my worries aside and did it.

We arrived at the friend’s house and right away, the kids were off — outside to play with trampolines and cats and bikes. The parents gathered in the kitchen. One sat at the table and the other stood at the counter. Their attention was on me. (Obviously, as I was the guest.) (Unfortunately, as well, because I don’t like being the center of attention.)

What followed was a full hour of conversation. Face-to-face conversation. I could easily follow the conversation about our boys, as I share that interest. But a lot of it was not related to the kids, and those were the parts I struggled with. Trying to follow and comment back on issues I have no link to, no interest in. I suck at that.

So there I was, having a conversation with these new friends, maybe 15 minutes into our visit, when I started to feel lightheaded. I had been making eye contact for that whole time. Afraid to look away. (I don’t know why I do that. Most people on the spectrum don’t look others in the eye. Perhaps it is the good manners my mother drilled into me as a child. Whatever it is, when someone is facing me and talking to me, I cannot look away.) I felt the old anxiety start kicking in, my face and body going cold, my brain getting fuzzy. The husband’s voice was in my head as I watched his mouth move and heard several words, and I nodded. Tried to regain my focus. But then I started thinking of how old he was, how old we all are getting, and I suddenly pictured him as a child of my son’s age. All the while, he talked and I stared as his words went in and out of focus.

Fortunately I was given several breaks from all this as the kids would often come in for drinks and questions. I really enjoyed their interruptions, let me tell you! As they walked away, my mind screamed at their backs, “Don’t leave!” But of course, they did leave. And the conversations would continue.

I cannot express the quiet glee I felt at the hour mark when I pronounced a thank you and a we-must-leave now. Then I was standing and collecting my things and all eye contact was broken. And then I was out the door and walking to the car and the kids were trying to talk about their time there and pointing out things in the yard and I was eyes forward. Eyes on the car. Ignoring all else but the getaway vehicle. The last part of my plan. The leaving.

The parents are coming over today with their children. To my house. I have my plan. It does not entail sitting in the kitchen staring at each other. Rather, we will visit outside, where we can watch the kids play and breathe the air. This is where I shine, in my own element where I can set the stage to my needs. It will be a better day today, I’m sure.

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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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