Illustration of man and woman sitting on park bench on autumn day

Whenever I go to speak at a new venue about my life on the autism spectrum, parents often tell me about their frustration over people saying “I’m sorry” when they tell them their child is on the autism spectrum.

This is something I continue to hear again and again…

When I hear those words in regards to my autism diagnosis, I often link it to sadness or that I “lost something” due to having autism spectrum disorder. I’ve been told I’m sorry by strangers, peers and even on several dates.

I’m not often upset when someone says these words, but I want them to know that I’m OK and I’m living my dreams today. Life was tougher when I was a kid, but because I stuck to my therapies and my interests, I’m able to thrive as an adult today.

Because of this, every time I hear these two words, I respond by saying this:

“Don’t be sorry. Autism is a part of who I am.”

I say this because when people learn more about my story, and my key interests in things like films, public speaking and basketball, they are able to understand my experience of being on the autism spectrum. Sure, it was a long road to get to this point, but I can truly say I’m happy today. Isn’t that what so many of us want?

I advocate because I want people to be accepting of those with autism while also providing supports to help each of our loved ones progress.

Please don’t say “I’m sorry.” Instead, get to know us and who we are.

Just like you would anyone else.

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I was diagnosed as being on the autism spectrum when I was 15 years old. By that time, I’d been through so much already. I had to learn how to develop most of my coping skills on my own. But even as a 27-year-old adult, I’m still struggling to get by in the world. So when I say I’m having a hard time and need extra help, it’s important to respect that as the truth.

When I say that, for right now, I can’t take more than one college class at a time because it’s so overwhelming, I’m not using my diagnosis as an excuse. I’m being realistic. Yes, I may be getting wonderful grades, but I’m working hard for them. I’m spending extra time just trying to understand the assignments and the material, because I know I tend to misinterpret things. One class is enough for now to nearly send me into a panic.

When I try to tell people that I don’t know how to do something that seems obvious, it’s not because I’m being “lazy” or “difficult.” I’m asking for help because I don’t have the ability to apply what I’ve learned in past situations to new ones. When others do things such as socializing or learning a new skill, they seem to know how to go about it. And even if they really don’t know what they are supposed to be doing, they at least know what not to do based on past experiences. I’m not always able to apply these ideas to new situations, so I really struggle and usually find myself just freezing up.

When I say I’m having a meltdown, I’m not just taking a break to relax. I’m really upset and don’t know how to handle it at the moment. I’m crying and self-stimming, barely able to regulate my body. My mind is so overwhelmed and my thoughts are so jumbled that I’m not able to calm down and work through the problems. I wouldn’t wish a meltdown on anyone. It’s exhausting and debilitating.

And when I ask how to word an email to someone, it’s not because I don’t know how to write. It’s because I’m worried about how it will be interpreted by others. There seem to be unspoken rules about what is appropriate and what’s not appropriate in different situations. And the rules always seem to be changing. I am so anxious about making sure that what I say is understood correctly, and that I understand others. I honestly can’t imagine how people will respond.

It may seem like I’m “neurotypical,” but that’s only because I’ve learned so many ways to cope with the world around me. There are still so many reasons for why I need extra help. Please don’t brush off my struggles, no matter how “typical” they might seem. I may be old enough to be an adult, but I’m definitely still learning how to handle “adulting.”

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As I’m writing this, I’m on the verge of a meltdown. My chest feels so tight, and at the same time, it feels like it wants to burst with emotions.

Stress, pain, sadness and anger, all these feelings. I want to scream, I want to cry, I want to hit things. And with all of this, I don’t know what triggered it.

I’m lying in my bed with the blanket over me and my head popping out. My hands won’t stop shaking. I’m getting short of breath. My mind’s running faster than ever, but it feels like my world is in slow motion. I hate meltdowns. They are scary.

The things I say and do aren’t me. When I’m at that point of no return, I feel like I’m out of my body watching everything I say and do to the ones I love. I’m saying “Why?” Why am I saying that? Why am I hurting the ones who love me?

Here are some things that have helped me when I feel a meltdown coming on:

I text whoever is in the house to please leave me alone and give me time to calm down. I also send a photo with “meltdown in progress” on it.

My mother will open the door a little and ask if there is anything around me that could possibly be used to hurt myself or anything around me. If the answer is no, she will say, “OK, I love you. Come out when you can.”

I have my light off. Wrapped in my blanket, I will watch something I like or listen to music or play a game.

Set up a plan for when a meltdown happens so everyone in the household knows. Set up a place just for you if you have to keep stuff there that will calm you. And just let the meltdown cool down.

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When Susan Boyle first took to the stage on “Britain’s Got Talent,” I realized she was on the autism spectrum. Her “quirky” ways had everyone laughing at her until the jaw-dropping moment she began singing “I Dreamed a Dream.” She stunned the world with her spectacular voice. Suddenly everyone forgot her little wiggle and cheeky comments to Simon Cowell. Susan became an instant sensation. But there was one thing about herself that she didn’t officially even yet know — the very thing that would help explain parts of the life she had lived up to that magical night.

Aside from her incredible voice, I became fascinated with her because I recognized she was autistic. I wondered if she had been diagnosed. Soon after she won second place, her autobiography came out. As I read her life story, I came to feel like she was the sister I never had but always wished I had. We were alike in so many ways.

Growing up, her mom was her only and best friend. Her singing was her special interest, and she regularly sang in a little pub not far from her home in a tiny village in Scotland. She described the tragic day when her mom died and how she survived it. It mirrored what I had gone through when my mom died. She described her mom’s wishes that she pursue her singing career. Susan has a cat named Pebbles, who gave her incredible emotional support. She talked about wanting to have a real friend who would understand her. I was so deeply moved by her story, as I felt that Susan and I could be best friends for life. I don’t sing, but everything else about Susan was just like me.

I remember the day I saw on the news that Susan Boyle just got diagnosed with Asperger’s! I was beside myself! I was bursting with joy for her to finally learn why she is the  wonderful way she is. I remember being horrified when I read in her book that in her younger days people called her “simple Susan” just because she was different. Susan is a perfect example of why no one should ever judge a book by its cover. She is the one person I so hope to meet in person one day. I would give her a big hug and tell her she’s my sister for life. I wonder all the time if she has found any friends yet, how Pebbles is doing, and how is she enjoying life now that she got diagnosed.

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From a young age, I loved dressing up just like many other children, using my imagination and having fun. I never stopped, really. I have autism, and like many others on the spectrum, I have a lot of trouble with crowds and social situations. I heard of this thing called cosplay (costume play) as a young teen, but I thought, “I can’t do that.”

When I was around 18 years old, I started looking at costumes of my favorite characters from movies, games, TV shows and anime. At first, I never did a full costume — just contact lenses, a wig and a jacket, or the top half of an easy costume (mostly shirts). And makeup, which I have a passion for.

I started posting pictures of my costumes on Facebook, and I got good feedback from family and friends. So I made a cosplay page on Facebook. Not long after that, I bought my first full costume, which was a Japanese school girl as I love Japanese culture.

I was bigger back then, and my self-esteem was very low. I had people telling me I was “too fat” to cosplay and that I shouldn’t cosplay because I have a disability. At many stages, I wanted to quit, delete the page and stop cosplaying. But I did something that would change my life for the best.

I went to my first convention, a small one only two hours from where I lived, but it was good enough for me. I met some amazing people, but it wasn’t until I went to my second convention just over a month after my first one (again, only two hours away) that I met some of the most amazing, kind and loving people I have ever met. The day after the second convention, they invited me, my mother and my roommate Michael for breakfast. This was also the first time my mom met them.

After breakfast, my mom looked at me and said, “I have never seen you so happy before and socializing so much. This group of people is what real friends are. Keep them close.” Sadly, they live six hours away from me, but every year I get to see them. They are now family.

When I cosplay, I’m not Hayley. I am that character. I’ve talked on stage. I’ve gone into cosplay competitions. It brings me out of my shell, and every year my cosplay family gets bigger and bigger. They all know I have autism, but they see Hayley the person before they see a person on the spectrum.

My Facebook page now has almost 7,000 followers, and they all mean the world to me. Because of cosplay, I have done things I never thought I would. I’m now more than 60 kilograms lighter, but personally, plus-size or not, I will cosplay whoever I want, and I will rock that cosplay.

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Although my daughter on the autism spectrum is 25, she has never voted in an election. Hopefully, the 2016 presidential election will be the first of many elections where Samantha will make her voice heard. Like many other parents of young adults on the spectrum, I have spent long years teaching Samantha millions of everyday activities so she could live as independently as possible. Somehow, politics and voting never made it onto my list of essentials — until now. Given the choice of voting for a Republican candidate who denigrates women, minorities and people with disabilities, or Hillary Clinton — who actually has proposed programs to support adults with autism — how can Samantha not vote?

My daughter’s future is at stake, and it’s my job as a parent to help her understand how to make the best and most informed choices. During past elections, I’ve already tried explaining the differences between Republicans and Democrats in the most basic terms, but Samantha’s eyes had glazed over. Nevertheless, she is able to dutifully repeat back to me that Republicans generally want less government, lower taxes and stand against abortion while Democrats generally believe in more government, higher taxes and support a woman’s right to choose. However, even these simplified differences between our political parties don’t seem to hold much real meaning for Samantha. Abstract concepts can be extremely difficult for my daughter to master, and she doesn’t seem motivated to persevere through the hard work necessary to understand unless she knows the abstract idea will connect with her own concrete experience in a meaningful way. When it comes to voting in an election, I believe the moment when Samantha needs to understand is now, fall of 2016. In the upcoming election, there will be no gray areas for people with disabilities like my daughter.

After more than a year of unsuccessfully trying to secure a competent, government-approved life skills (“community habilitation”) worker for Samantha, I have taken on this job myself. Today’s life skills lesson included helping Samantha register to vote. Thankfully, registering is a simple computer exercise. But the tricky part was explaining whyWhy register? Why bother straining to understand the pros and cons of presidential candidates? Why is the outcome of this particular election important, and how will it impact Samantha?

Right now the answer to those questions seems simple. For Samantha and others with disabilities, registering as Democrats can be a form of self-advocacy, and voting for Hillary Clinton is, to me, the only way to go. My daughter and her peers need help becoming independent, finding meaningful work and safe-but-dignified housing options. Living at home with her parents two years out of college, with no job and no prospect of finding a job, has turned an abstract concept (the importance of training and employing people with disabilities) into a concrete reality that my daughter grasps completely and fervently yearns to change. Now, like never before, Samantha knows she needs society’s support to fulfill her potential as an adult. A candidate like Hillary Clinton will at least try to support Samantha’s needs and promote her inclusion in the world. The opposition would cut existing programs and funding for the disabled, either ignoring or excluding this vulnerable minority.

Here’s my personal observation of the current political situation as it relates to Samantha and other adults with autism: Hillary Clinton wants to help you. She cares about you and others with disabilities. Clinton has proposed programs to help you make the transition from school to work. Donald Trump doesn’t want to spend the money to help you. He doesn’t appear to care enough about you and others with disabilities. He will not work to include you in the neurotypical adult world. Helping people with disabilities costs money, and he wants to save money.

My daughter and other adults with disabilities have grown up with a bone-deep understanding of bullies. What they may not yet realize is that some bullies (like Trump) never grow up. Some bullies remain self-centered and heartless, even as they acquire wealth and power. People with disabilities need to pay attention, because a big bully is trying to come into power now. Powerful bullies can most definitely hurt people. But if you see a bully who’s running for president, you can certainly cast your vote against him, exercising your own power to push back.

I believe young adults on the spectrum can learn many important life lessons by participating in this election. First and foremost, voting is an opportunity to exercise and express independence as an adult. Voting is a valuable opportunity for those who are often marginalized to make their voices heard. Further, participation in the political process can help people with communication issues feel included in important conversations. Even a simple political discussion can be an opportunity for Samantha to become passionate and enthusiastic without being rude or offensive. As she learns to think about what’s best for her and the world, she is asking more questions and becoming a more active listener. Her vocabulary is increasing, and maybe she will begin to better distinguish truth from lies. I’d like to see the day when my daughter comes to realize that people who disagree with us are not necessarily wrong, but they may simply hold a different perspective. I hope Samantha will realize that sometimes the best and only solution in extreme arguments is to agree to disagree.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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