How Opening Up About My Autism Brought Me New Life

I’m coming out of the closet to every single one of you today. It might not be the “out of the closet” you expected, but it is my puzzling and unique autism closet, filled with memories, drawings, writings and deep miscommunications.

I am bursting out, swinging open the door loud and proud, with all of the quirks, complexities and traits that make me the person I am today.

Let me tell you, it wasn’t always this way. Disabilities like autism often are viewed in our world as things of which to be ashamed or to hide.

Think about your previous interactions or experiences with people with disabilities. Maybe you pitied a kid in a special education class, bullied someone, felt uncomfortable during a conversation or thought it was the kind of thing your parents might see sensationalized on “Dr. Phil.”

These all seem like valid reasons for someone to keep an autism diagnosis to him or herself, or to be shared and discussed in hushed tones on a discretionary basis.

Most likely, this diagnosis is shared only with family members who have been there every step of the way since hearing the fateful words, “Your child has autism.”

On the contrary, I feel it is my duty to hold my head up high and embrace my autistic identity.

The Center for Disease Control estimates that one in 68 children has been diagnosed with an autism spectrum disorder. That’s a lot of future adults to be hiding in the same closet I’ve been in, whispering the A-word like it’s a death sentence.

I did it for most of my life, and didn’t embrace autism enough to shout about it on social media or even to close friends. I wanted to pass as normal and not be judged. I didn’t want to be labeled autistic; it was easier to tell people I was just shy or quiet.

In a culture that values norms and conformity, I wanted to be socially accepted without being too different. I was afraid of being judged, being ridiculed or treated differently. There came a point I realized I had no choice but to be honest about my journey as more people embark on similar ones.

Without further ado: I am Haley and I am autistic. I actually came out of the autism closet back in high school at the tender age of 14, but only meekly after being put on the spot by my English teacher.

At 20, I can tell you that being different is awesome. I love being me; I love being a self-identified introverted creative type with a misunderstood mind that misses out on valuable social cues and exotic foods. I love being one of the most socially awkward people you might ever meet, but I am also one of the most honest.

I might hit developmental and societal milestones in a different order than my peers, but I am able to accomplish these small victories on my own time.

Coming out of this closet has been liberating and thrilling. If I were not autistic, I wouldn’t be where I am today.

I would not be the author of two books, I would not be a guest lecturer, I would not have such authentic friendships built on honesty and trust and I would not know how great success truly feels without the level of challenge I have experienced.

There is something extremely comforting in knowing I do not have to hide who I really am to the world and pretend to be an actress on the grand stage of life. This experience of coming out of the autism closet has not been perfect, however. There are lots of downfalls to it, too.

I have been discriminated against, asked inappropriate questions, told I was jumping on the diversity bandwagon and called names. I don’t want to focus on these injustices today. I’m not here to tell you I’m awesome, but that I feel awesome to have this fierce self-acceptance thing going on.

In turn, you shouldn’t feel bad for me because the word “autism” is branded on my identity. I am stronger than the negative perception of autism that is out there, and I am damn proud of that.

This post originally appeared on Elite Daily.


When You Lose Someone Who Was Your World

When you lose someone who means the world to you, when you lose someone who was your world, there is so much that happens. And there are the little things and even the big things you expect… and then the little and big things you don’t expect.

No one tells you that you never stop opening the chat window. No one tells you that you never stop logging on, expecting to see a message. A post on your wall that will make you laugh. It’s gone.

No one tells you that you never stop picking up your phone to send a text or a Facebook message.

No one tells you that the words “Let me know if you need anything” can mean literally nothing. We don’t know what we need. Sometimes what we need is a message saying, “Hey, can I come over?” And sometimes we want someone over. But it doesn’t mean we necessarily want to talk. Maybe we just want someone so we’re not alone. So we’re not without people. We need people… but sometimes we need people while we’re alone. We need someone just to sit with us, who is there if we suddenly pipe up with something, but who is also just there in the silence.

We need someone who is OK if we sent a frantic text or Facebook message at whatever a.m. It’s OK if you don’t read or respond; don’t feel you have to. But we need someone to share our pain with.

No one will replace the person we lost. Nothing can ease our pain. I don’t believe grief ever goes away. Instead, I believe it changes. It grows with us and it becomes a part of us.

I truly believe people mean the best, but no one tells you how much it f*cking hurts when people say, “Oh, I know exactly how you feel.” No. You. Do. Not. You did not have the same relationship I did. You did not lose the same friendship I did. We lost the same person and we’ve both lost loved ones, but you have no idea how I feel. You can relate. You can feel similar. But you have no idea exactly how I feel, and those words hurt so much.

What no one tells you is how lonely grief is. That it’s the moments you least expect it is when you are blindsided by it. That when you’re walking home alone from the grocery store at midnight, it’s when the tears fall. When you’re on the bus and you see something hysterical that you’d text them, it’s when the familiar salty feeling overwhelms you.

Grief is forever. It becomes a part of you. No one tells you that. You expect that in time, you will get better. I don’t believe you do. I believe as you approach your new normal, you change. But grief is the price of love — and it’s worth it, I think. I think love is the greatest  gift you can give anyone. And in a way, I think the grief and pain is that final gift you can give them. For it means that your relationship meant something — to both you and to them. It means their life meant something to someone — to many someones — to countless someones. And that’s what matters. That’s what love is.

Follow this journey on A Heart Made Fullmetal.

Lead photo source: Thinkstock Images

When People Think I’m ‘Sensitive’ About My Child With Special Needs

“I know how sensitive you are about these things.”

Ouch. It was a comment made in an attempt to be sensitive to my feelings, but it felt like a punch to the gut.

“These things” she was referring to happened to be people leaving out, discriminating against, bullying or otherwise hurting my son, A-Man.

I get a bit sensitive when my other son, Mr. C, is invited to a play date for the fourth time in a row without A-Man.

I get a bit sensitive when people imply I should avoid having more children with special needs.

I get a bit sensitive when someone asks me why my son doesn’t play like a “normal” kid.

I get a bit sensitive when people criticize me for feeding my son foods he will eat instead of forcing food he can’t tolerate.

Yeah, I guess she was right.

A-Man is routinely left out because people won’t make an effort.

I’m not ignorant. I know it can be more challenging to take a child with autism to the park than to take a child without any special needs. I know when family and friends want to take Mr. C for a play date, they just need to buckle him in the car and let him play, while taking A-Man requires pull-ups, pre-planned snacks and handling potential meltdowns. I know Mr. C can easily listen when someone tells him to stop playing with something, while A-Man can easily become fixated on something (and it’s usually something he shouldn’t play with, like cords and wires).

But I also know it doesn’t take that much effort to make something work for A-Man. Pack some extra baggies of goldfish crackers, give him some time to adjust to new surroundings and he will have just as much fun as Mr. C almost every time. There are some events A-Man truly can’t handle, like spending the night somewhere new or going to Chuck E. Cheese, but those are the exception and not the rule. So yes, when A-Man is left out of an outing or event he would really enjoy simply because it might take a bit more effort, I’m sensitive about it.

People say terrible things about others with special needs without realizing.

I know in this day and age, it’s nearly impossible to say anything without offending someone. I believe that’s especially true in the special needs world. It feels like if I say A-Man is autistic I might offend roughly half of the population, and if I say he is a boy who has autism I might offend the other half. I tend to give people the benefit of the doubt, especially if they don’t have any reason to understand children with special needs. I do realize most people are not intentionally being cruel, but sometimes it gets really old. When someone asks what’s wrong with A-Man or says something like “my child would never still be in pull-ups at 4,” I get a tad sensitive. Right now A-Man doesn’t understand cruelty, which I’m incredibly thankful for, but one day he will. I will not allow people to insult him no matter how sensitive that may make me.

Being a special needs mama can be hard.

This is probably the biggest reason I’m sensitive. Between the pull-ups, meltdowns, food sensitivities, therapies, specialists and 947 other things we deal with every day, we honestly don’t have the time or energy to deal with people being terrible to/about us or our kids. We are tired and overwhelmed. We get overly excited over small victories, like a trip to the grocery store with only one meltdown, and we can get easily upset by difficult setbacks. When you heavily favor our kids without special needs over those with, or you make nasty comments about our kids or our parenting, it adds another thing to our already heavy load.

So friends, we know you aren’t trying to be cruel, and please know we’re not trying to be overly sensitive. Most of the time, we are just sensitive for our kids with special needs because we have to be. The world isn’t always sensitive to them and their needs, so it hopefully isn’t too much to ask for our friends and family to be a bit sensitive to our needs.

Follow this journey on This Outnumbered Mama.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.

Lead photo source: Thinkstock Images

What This Mom Wants You to Know for Down Syndrome Awareness Month

Before I had a child with Down syndrome, I probably would have rolled my eyes when I realized October is Down Syndrome Awareness Month. I mean, aren’t we aware? We’re aware of these people who look differently than we do. Why do we need another awareness month, especially for a condition with no cure?

Yeah, I wasn’t very empathetic then. Down syndrome changed that. Down syndrome changed many things.

Down syndrome has made our lives fuller.

Our schedules are full of doctor appointments. Our days are full of therapy exercises. But our hearts are full of a fierce kind of love we didn’t know existed and of a hope we’d only read about.

Here’s what I want you to know this Down Syndrome Awareness Month: Our son Anderson’s life is not a tragedy. Our lives are not a tragedy. None of us are living a less than life because of Anderson’s extra 21st chromosome.

There is no need to give us a sympathetic look or say to our son, “poor baby” when you learn of his diagnosis. There’s nothing poor about Anderson. There’s nothing poor about us. We are some of the richest people I know. We have, in part, Down syndrome to thank for that.

Down syndrome doesn’t define our son. It doesn’t define us as a family. But it is teaching and molding us into the people we were meant to be.

We know some things will be more difficult for Anderson because of his diagnosis. But all of us have strengths and weaknesses. And in Anderson’s nine short months of life, we’ve also seen the power that extra chromosome possesses — for him and for us.

Because of Down syndrome, we care more, worry less and both love and fight harder.

There’s nothing down about that.

Follow this journey on News Anchor to Homemaker.

To the Kids Who Bullied Me Because of My Disease

I was diagnosed with Crohn’s disease 17 years ago at the tender age of 11. After my diagnosis, losing a significant amount of weight and missing prolonged periods of school, I never thought for a moment it would become fodder for some fellow classmates to use against me.

After a month-long hospital stay I walked into what would become a five-year nightmare. I was called many cruel names such as ugly and gross, and people said I had an eating disorder. The bullying didn’t just stay at school; it followed me home as well. The one place I was supposed to feel safe was taken away from me. The older we got, the worse it became. I would find food in my mailbox with cruel notes, and I had to disable my email and messenger accounts because there would always be nasty notes left for me.

At around 15 years old, my mom hired a tutor from the school district to homeschool me, and by 16 years old, I tested out of 11th and 12 grades in three months and graduated early.

This is what I want to say to those who bullied me:

I don’t know if you ever think of what you did or said to me. But did you ever realize that while you were calling me names, showing up at my house and leaving me messages to make sure I never missed a thing you said, you were making fun of a young girl who just found out she had an incurable disease? That’s the thing about so many diseases — they are invisible. You can’t see them, so people don’t believe they are there. While you thought I was lying and had an eating disorder (like that makes what you did any better), and I was dealing with your bullying at school, I’d go home and have to spend many hours in the hospital and get IV medications to keep me alive, get blood work done weekly, experience multiple hospitalizations and have more surgeries than any child should ever have to endure.

School was suppose to be my break away from that all, but you took that away from me. You took away what was supposed to be the best years for a teenager. I didn’t get to experience prom because I was afraid of what would be said or done to me. You temporarily took away my self-confidence, and my ability to trust and make friends for awhile — but worst of all, you made me feel gross and ashamed of having a disease I never asked to have.

But what you didn’t take away from me was my strength, and my ability to gain all those things back over time. Through my pain I’ve been able to help countless others with similar stories to mine and mentor young girls to have positive body images. I’m going to talk to the class of my son (who has autism) this year on differences and acceptance, as well as stopping bullying and speaking up for others. Nobody should ever have to feel the way I did for so many years. Crohn’s disease isn’t gross or anything to be ashamed of; it’s a debilitating disease that many people unfortunately have.

I want you to know your words didn’t stop me, and I’ve forgiven you long ago. What your words did in the long run, was make me see how strong I truly am, and to be the best person I can each day for myself and for others, too.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.

Taylor Swift Donated $50,000 to Backup Dancer’s Nephew Who Has Cancer

Taylor Swift is at it again.

After one of her backup dancers, Kim “Toshi” Davidson, shared a photo on Instagram of his 13-month-old nephew who has cancer, Swift swooped in and donated $50,000 to little Ayden’s GoFundMe page.

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Via Instagram

Beneath the generous donation, which she made on October 1, Swift wrote the following.

“Baby Ayden, I’m lucky enough to perform with your uncle Toshi on tour. All of us are praying for you and your mama and sending so much love your way. Love, Taylor.”

Davidson posted a picture of Swift’s donation to Instagram along with a message of thanks.

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Via Instagram

So I get off the plane in Toronto and this is the first thing I see… Taylor Swift is an angel and my family and I can’t thank her enough. She is such an incredible human being. This will help Lil Toshi in this time of need. Let’s pray for him to beat this. This unexpected gift is truly a blessing.”

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Via Instagram

This isn’t the first time the superstar has done something this generous. In July Swift donated $50,000 to a sick fan who missed her show. In fact, Swift has donated so much money on GoFundMe that the site had to increase its donation limit, according to GoFundMe CEO Rob Solomon. Swift has given more than any other donor in GoFundMe history.

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We face disability, disease and mental illness together.