To the Parent Who Asked, ‘Was My Child Born With Autism?’

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When you told me about your child, when you first saw signs of autism in them right around their 2nd birthday, you looked at me with tears running down your face. You told me that was the first time you got him a diagnosis and how relieved you were finally to know what it was so you could help.

You then asked me, “Do you think my child was born with autism? Was it something I did? What could I have done differently?”

I didn’t know what to tell you at that time. It reminded me of a time before when I was again speechless when a parent had asked me what will happen to their child when I’m gone. I believe it’s these types of questions that are always the most difficult and most sensitive for our community to answer.

I remember that conversation like it was yesterday. How I started telling you there is no medical detection or cure for autism today and how if you’ve met one child with autism, you’ve met one child with autism. Then I started to tell you about my story. How I was nonverbal until I was 2 and a half, had regressed shortly after that and how I was diagnosed with autism at 4.

You see, back then, I’m sure my parents would have told you if you asked them the same question that it was something that happened to me while I was getting older. Today I can tell you that autism has made me the person I am, and I wouldn’t want it any other way. It wasn’t always like that, but it is now. I continued the conversation by giving you my card and telling you, although I’m not a scientist or an expert in the field, that regardless if your child was born with autism or not, the journey you are on right now is one countless parents are going through. Please don’t play the blame game with yourself. It will do you no good.

Repeat after me: it’s not your fault.

Every second you blame yourself for your child’s diagnosis is one less second you have to help them. For anyone reading this, some days are going to be tough (I know this from experience), but I promise you there are countless advocates out there — like me — who will be there to help you. Become an advocate for your child and always know that if you need someone, I’m only one message away on Facebook.

As you continue your journey, you’ll find there are many people like me who are willing to help you. Don’t close yourself off to us. Embrace “community,” and when the tough days come, know will get through them together.

Your friend,
Kerry

A version of this blog originally appeared on Kerrymagro.com.

Lead photo source: Thinkstock Images

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The Touchy Subject of Getting Intimate With Autism

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When I was 15 years old, a boy moved in across the street.

Naturally, he was the cutest and dreamiest boy I’d ever seen, with his green eyes, freckle-covered pink cheeks and a bowl haircut that would’ve put Julius Caesar’s to shame.

More than anything, I longed to be close to him, to see my almost-immediate crush on him blossom into a full-blown relationship. When we’d hang out in his room after school, I was constantly glued to his side.

“Amy, come look at something on the computer.”

Whoosh! Now I’m 3 inches from his face, staring intently at him instead of the screen in front of us. (Personal space? What’s that?)

I am autistic, and for awkward teenaged me, physical closeness was a proxy for emotional closeness. At the time, I did not have the tools or ability to create the latter, so I (over)compensated with the former.

An early harsh lesson in intimacy.

What no one told me then, and what I didn’t realize until years later, is that intimacy takes a long time, and it is not something you can force into being. It starts with trust, with the willingness to allow someone into your personal space and vice-versa, and it grows with the aid of continual and clear communication.

On a visual level, there are certain actions or gestures that we know and interpret as intimate: Kissing, touching someone’s face, hands or other body parts. For individuals on the autism spectrum — especially those with sensory issues — all of these tend to present a challenge, and on top of that, visual depictions stop at the surface, barely exposing the tip of the intimacy iceberg.

Like autism, intimacy is a spectrum.

Intimacy can and often does look different for people on the spectrum than it does for neurotypical folks. Sometimes intimacy is simply sitting quietly in the same room with someone, tolerating their presence in your private environment. Whatever form it may take, intimacy runs deep, and there is no one way — no right or wrong way — to be intimate with someone.

When I was 22 years old, I had sex for the first time.

I believed, as had been the case in almost every movie I’d seen up until then, that after we finished making love and were covered in a glowing sheen of passion, there would be some sort of cuddling. I felt prepared for this, and when he returned from the bathroom after washing up, I turned to him expectantly.

“No,” he said, facing away from me when I asked if he wanted to cuddle. “I’m really tired.”

So I left him alone and laid there in the suddenly cold bed, also alone, sleeplessly staring at the ceiling and wondering what I had done wrong.

Intimacy is unselfish.

Another challenge I faced as a woman on the autism spectrum was a long-held belief that, because I could not always articulate or express my needs, everyone else’s needs mattered more. But to achieve true intimacy, all parties involved must have their needs taken into account.

Above all else, intimacy takes work.

Intimacy requires patience, kindness and a lot of understanding. There will always be people trying to solve the great mystery of intimacy, and there will always be shelves full of self-help books and angst-filled rock ‘n’ roll songs on the subject. But where the journey is inherent for neurotypical people, autistic individuals are made to convince others that we are worthy of the same opportunity.

When I was 23 years old, I had my heart broken.

The boy who turned away from me that night turned my love away for good, and I was devastated beyond words. Even though the heartache I experienced then was the worst pain I have ever felt, I am grateful I had the opportunity to feel it, and through it, find strength in myself.

Intimacy brings with it the possibility of both joy and pain, exhilaration and sorrow, love and loss. It can come in different forms and shapes and be complicated or simple. And while being autistic sometimes makes it challenging to be intimate, it is a part of the human experience that should always be open to those who want it.

A version of this story was first published on Autism Speaks.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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.

Lead photo source: Thinkstock Images

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The Simple Gesture From Phil Loadholt That Meant Everything to My Son

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My son Tucker is a Minnesota Vikings fan. Yes, even after their recent loss to the Seattle Seahawks. He comes from a long line of Vikings fans — his dad, grandfather, uncle are all Vikings fans. Me? Yep — me, too. I’ll yell “Skol!” any chance I get at the television. I have not been a lifelong fan… but loving my son has made me a fan.

When autism and athletics intertwine the most beautiful thing can happen. Players, numbers, plays, records — all memorized. Memorized early on in his life, he probably knew and could recall more about the Vikings at age 6 than many adults. This knowledge of the Vikings is certainly amplified by his ridiculously amazing memory.

Last summer we took a trip to Vikings training camp. It’s a time where fans can get up close and personal with the players. There is a morning “walk-through” where players are not wearing pads and helmets, and then an afternoon, more traditional practice.

I decided at 6:30 a.m. I was going to take him. I’d been thinking about it for a couple of days. So — I woke him up at 7 a.m. and said, “Tucker, get ready — we’re going to Vikings training camp.” I’m not sure I’ve ever seen him move so quickly.

What does this trip have to do with autism? I sometimes forget. I forget all of the “stuff” that can go along with a new experience. I’m usually much better at preparing him, but I was still pretty exhausted from our recent vacation.

On our way we stopped for a new book because he had read the one in our vehicle eight times. What did he choose? “Captain Underpants.” I tried to have a conversation with him about choosing books more age-appropriate. He wasn’t having any part of it. He likes that series, so he’ll read it over and over and over again. Then I recalled: We were on our way to do something new, something different. This book would help calm his nerves until we arrived.

The book was nearly 200 pages long. He finished it in 45 minutes.

We arrived, and he had no interest in waiting in line for autographs. He simply wanted to watch the walk-through. We sat… we talked… we watched. Then it was time for lunch.

A new restaurant, a different menu, a hot boy.

Dark, crusty grill marks on burger.

Recipe for disaster.

Quivering lip at lunch.

We left, and we took a break. We found a cool spot and sat for awhile. Then it happened. A friend of mine was able to give Tucker a great opportunity — the opportunity of a lifetime, really: to stand in the hallway as all the Vikings players passed by.

Surprisingly, he initially wasn’t excited. I soon understood why.

As I stood in the hallway facing the players exit, he stood on the other side of the wall. He would peek his head around the corner to see the players coming. At first I blamed it on the lunchtime meltdown… but that wasn’t it at all.

He uses scripts to make conversation. He didn’t know what to say. He had no experience stopping a Vikings football player to ask for a picture. He had no experience in even saying hello as they passed by. He didn’t have the language.

How selfish and inconsiderate of me. I hadn’t prepared him for this moment. Not at all. I was so frustrated with myself, until I decided I would just have to model. I didn’t know many of these players, nor did I really know what to say, but I’ve never shied away from a stranger.

As they came through I began saying “hello” and “have fun.” “Stay hydrated, it’s warm out there.” “Have a great season.” As I looked at Tucker I realized he was watching closely — taking mental notes of what to say and how to act. He also giggled when I told Teddy Bridgewater and Chad Greenway to have a “good game.” At least I got him to smile and shake his head. They weren’t going to a game; they were going to practice.

Then, I saw him. One of Tucker’s favorite players — an offensive tackle, Phil Loadholt. Tucker stood in line for his autograph six years ago. They have something in common: both the biggest guys on the team – and here he was, walking down the hallway. Tucker looked around the corner, and his eyes lit up. He turned back towards me with a hopeful face.

I nodded at him and mustered the courage, “Excuse me. Would you be willing to take a picture with my son?” He peeked around the corner and looked at Tucker, pointed, and then looked back at me. “Yes, him — I know…but he’s actually just 13.”

He smiled, put his arm around him, and said, “You’ll be my size in no time. You’re a big kid. Keep working.” Tucker nodded and smiled.

From that point on Tucker moved beside me. He smiled at every player on the way out. He waved and often said a quiet hello. Adrian Peterson nodded at him.

Mr. Loadholt has no idea what he did for my son. He gave him a new script, he gave him hope for his own “lineman” career – it’s not glorious, but it is about loyalty, protection and a calm strength.

Those are the finest qualities that my Tucker possesses and evidently he does as well.

That ginormous man with that amazing smile also won my heart, that is for sure.

Tucker and Phil Loadholt of the Minnesota Vikings
Tucker and Phil Loadholt of the Minnesota Vikings

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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When a One Republic Song Helped My Autistic Son Say ‘I Love You’

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I’ve always believed music is a good way to express yourself for virtually everything. When I’m excited I’ll throw in some Pitbull. When I’m happy I’ll put on that overplayed but catchy tune by Pharrell Williams. I just can’t help but to clap along because happiness is the truth. When I’m on a long road trip I find myself listening to Ted Nugent, because it reminds me of the road trips in my dad’s semi truck when I was a kid. And when I’m heartbroken I believe Meredith Brooks described it best in her hit song “B*tch.” We are all allowed to hate the world on days like those. So it was no wonder when I had my son, Brock, that I introduced him to the wonderful world of music. Not always the songs I enjoy, but songs nonetheless.

A few years ago, Brock took a big interest in the band One Republic, and when their hit song “Counting Stars” came out, it was on repeat in my home. I believe at least half their views on YouTube came from my house.

He had the song memorized after the first time hearing it, and we would belt it out constantly throughout the days. At bedtime he’d ask me to sing that “stars” song (bless him, I sound like a pterodactyl) to help him fall asleep. He’d dance around the house with some Elvis-esque hip swivels to “Counting Stars” as well. One Republic and everything “Counting Stars” took over my life quickly, but I can’t help but be thankful because it did something much bigger than I ever expected.

Brock has always had an extensive vocabulary, but has trouble communicating and expressing emotions. By the age of 6 I hadn’t heard him say “I love you,” but it wasn’t a big deal because he showed his love in other ways. In his ways.

One day about a year ago after I finished singing that “stars” song for him (again, bless him) he says to me, “Mom you know that L-word? Well, I do as much as there are stars in the sky.” I had to clarify what he was saying so I asked, “You love me as much as there are stars in the sky, Brock?” And he nodded his head an affirmation and said, “Sing it one more time for me?” So I sang it one more time with tears streaming down my face. Seeing him work through his emotions and label it correctly was a huge moment. And hearing “I love you” for the first time was a big deal. I knew he did, but to actually hear it was a moment I’ll never forget.

I don’t want to give Ryan Tedder and One Republic all the credit, because Brock is the one who worked through his emotions and feelings to give me something I didn’t know I was missing, but I’ll give them some. Thank you, One Republic, for creating music that touches people of all ages and moves them in ways I can’t even describe properly. I don’t know what that song means to you; maybe it’s to someone you love, or something you couldn’t quite grasp, but to me it will always remind me of the time my son said “I love you” in a way only Brock can. “As much as there are stars in the sky.”

smiling boy with blonde hair
Lindsay’s son Brock

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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To Parents, From One Person on the Autism Spectrum

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Ever since I found out that I was on the autism spectrum, I have loved being a self-advocate to help others. I started a blog about my life and published a book. I have made YouTube videos, written articles and given presentations. Of course, the views expressed are my own. But my hope is that people can learn from what I have been through and apply it to what may help others. I especially enjoy sharing my experiences with parents and caregivers, teachers and professionals who are looking for ways to help people they know on the spectrum.

Unfortunately, it hasn’t always been easy to help parents. Many times I would try, but I wasn’t able to join their groups online or in person. A lot of people thought I wanted a support group that was geared toward others on the autism spectrum, rather than for parents. Once, I was even added to a parents’ support group, but they told me they had accidentally added me, and then immediately kicked me out before I could post anything.

It was all so discouraging. I couldn’t figure out how to explain that I just want to help people who aren’t on the spectrum to better understand autism, at least from my own point of view. Finally, I read a blog post about the two words that a particular parent wanted to hear after their child received an autism diagnosis: I’m here.

That’s when I understood that not everyone processes the news of an autism diagnosis the same way. Some people are happy for answers. Others are scared of what the future holds. Maybe they are overwhelmed by the vast amount of information and just don’t know where to start. And still some need time to let it all sink in. Perhaps even all of the above.

So, to those who are lost in a sea of emotions; to those who feel that they might be on their own; to anyone who is ready, I’d like you to hear those words. I would like to say that I won’t judge you. I want you to know that I would love to provide insight into what my life is like, personally. This is not to say that I speak for anyone else on the spectrum, because I don’t. I only want to help. You don’t have to go through this alone.

I’m here.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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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An Apology From an Autistic Person Who Spoke ‘On Your Behalf’

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There have been times when I have been that exact person who started a letter or a forum post with “The autistic community feels…” or “We autistics tend to believe…” There have been times when I’ve assumed that how I perceive the wording of a PSA (public service announcement) that a particular organization puts out or the portrayal of an autistic character on television is how most people “like me” (i.e. most autistic people) would perceive that very thing. There have been times when I’ve written as though how I feel about autism as a “difference” instead of a “disorder” is how everyone else with autism feels about autism. There have been times when I’ve tried to be “the voice” of “the” autistic community.

And in those moments, I believe I’ve done my fellow autistics/people with autism a disservice.

I’m sorry for all the times I’ve spoken over you. I’m sorry for all the times I pushed aside your experiences and accounts when advocating for my own. I’m sorry for assuming that everything that affects me as an autistic person necessarily affects you as well, and I’m sorry for all the times that I’m ignorant to or don’t speak up about the things that affect you as an autistic person that don’t affect me. It was never my intention to invalidate you or your experiences or to put words in your mouth that aren’t in your head and heart, but there have been times when the way I worded my opinions has unintentionally done exactly that, and that is wrong of me.

I want to use my words to help make the world a better place for those with autism and other disabilities, but I want to do so in a way that makes known the understanding that others may have different ideas as to what this “better” entails or how to go about making this “better,” and that those differences are equally valid and deserving of consideration. I want to be a better advocate, and I now see that doing so means I can’t try to be an advocate for all autistic people or all people with disabilities. I believe I can only be an advocate for myself and my viewpoints, and I can only (and should) help to make the self-advocacy of others known and appreciated instead of trying to be their advocacy.

So thank you to Erin Clemens (who wrote a piece calling out people who try to speak on her behalf) and others who continue to remind us that one autistic person is only one autistic person and is not, nor should try to present themselves as, a reflection of the entire autistic community. Recently, I’ve tried to put in this very disclaimer whenever I mention autism and the matters surrounding it, and I do try to acknowledge that others on the spectrum feel and think differently than I do, but I slip up sometimes. When I do slip up, I want to be called out on it.

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 Share Your Story page for more about our submission guidelines.

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