Autism and Hope: Why I Share Stories About My Son

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mom hugging son Hope. Only four letters, certainly not a long word — but a big word.

Wikipedia defines hope as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large.” Like most of what she wrote, Emily Dickinson’s definition of hope is much prettier. Miss Dickinson gives hope wings:”Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.”

April is Autism Awareness Month, and there will be stories of hope and feathers everywhere you turn. From families of recently diagnosed children who are struggling to find the feathers in their souls to parents of adult children who found their feathers decades ago. Some days, as parents we experience more molting of our feathers than we like, which makes us feel exposed and vulnerable, but, in time the old feathers are replaced with new ones and our ability to hear the tune of our feathers returns.

Since the first moment I knew it was autism, I felt the feathers perch in my soul. At first the feathers were small as I had to grieve and accept that what I once hoped for him may change. I had a hard time feeling the feathers back then. As time passed, the feathers grew, and I clung to each and every feather that perched in my soul — for without the feathers, the only alternative was falling and crashing as I let go of hope. As one milestone after another passed him by, at first I would crash, but in time I felt the tickle of hope that one day perhaps, he would catch up. With every feather that fell away, a new one took its place helping me to hear the tune again.

When I would beg him to “look at me” I felt the feathers tickle my soul as I occasionally caught a glimpse of his eyes and saw his own hope reflecting back in my own. Ryan’s feathers tickled his soul hoping one day I would understand that he can see me and hear me, even if he is not looking at me. Ryan clung to the hope that I would hear the unique and beautiful tune his soul was playing while drowning out the tune I always expected to hear. Some days I listened more than others.

In those early days, the feathers that perched in my soul were small, thus the tune they played was quiet. Over time though, the feathers grew and the tune got louder. I began to feel and hear hope more frequently. Hope was found in an unexpected hug, a beautifully written essay, a song being sung from the shower and communication through scripts that brought him joy. Yes, I swear I felt the feathers grow.

Hope is a powerful word, and without it, Ryan would never be where he is today. It was hope that caused me to push, nag and prod him along. Not hoping for change, not hoping for him to be someone else, just hoping for him to be the best him he could be. And for me to accept that the best him, the perfect him, was better than the him I once imagined all those featherless years ago.

Decades ago, mothers were told there was no hope; not even the tiniest feather could be felt awakening their soul. They were told to institutionalize, give up, move on, stripping them of their feathers and muting the tune their soul was so desperately trying to play. Without hope, there were no feathers, there was no tune, there was no “optimistic attitude of mind;” there was just despair and hopelessness. My heart aches for the parents whose feathers were stripped away by those who thought hope was a waste of time.

Today, when I share stories of Ryan’s progress, of how far he has come, I write stories of hope, I share the gift of feathers. People tell me, “Ryan gives me hope for my son/daughter.” I love that, but at the same time it concerns me. I worry I may give “false hope” — false feathers, as each autistic individual is different, but then I question… is there such a thing as false hope? Who wants to live without hope? Without feathers perching in your soul and singing a tune? Sure, the tune is different for my child than yours, but we still need to find the feathers that enable us to hear the tune in the first place.

If I stop sharing my feathers then I am no better than the so called “experts” who stripped away the feathers of all those mothers years ago. So I will continue to share my feathers, my hope, my tune because just like birds cannot fly without feathers, dreams and hope cannot either. Although I am no Emily Dickinson and my words will not span into the next century, for parents loving a child with autism, I’d like to think in this century, in this moment, I too give hope wings.

boy with brown hair and glasses smiling at camera
Hope is necessary. Hope is needed. Hope is real. Hold onto it. Feel the feathers inside you, inside him. They are there. Your child is trying so hard to fly, and he wants you to fly with him and hear his beautiful tune even if the tune sounds different than anything you ever expected to hear. The tune is beautiful, and with or without the words, you can hear it, but you have to listen, you have to hope so the tune for both of you “never stops at all.”

Follow this journey on The Awenesty of Autism.

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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When I Say, 'My Child Is Autistic,' and You Say, 'I'm Sorry'

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It took me a while to be able to say the words “My daughter is autistic.” For a while, even when I said them to myself, they sat like lead on my tongue. When they did come out, it sounded like a stranger’s voice or an awkward attempt at speaking a foreign language.

It took even longer for me to be able to use those words in everyday conversation. Piper had a diagnosis for months before I even hinted at it on social media. Beyond a small group of friends and immediate family, the information was on a need-to-know basis. This wasn’t because I was ashamed or sad; it was more of a motherly attempt to protect her. What I feared the most was that once those words were out there, people wouldn’t see “Piper” anymore. They’d see a preconceived notion of autism first.

After a while, I realized saying those words wouldn’t change how my friends looked at Piper. I realized if they did, then perhaps friendships would be reevaluated and the circle would get a little smaller. When I finally decided to share, I did so casually and received a warm, genuinely supportive response –the kind you would expect to receive from true friends.

What you can’t predict, however, is the response you’ll get from strangers or acquaintances. The worst of which is simply, “I’m sorry.”

“I’m sorry” is something you say to someone when they’ve experienced a loss. Nothing about my child being autistic is a loss to me. The day she was given her diagnosis, we didn’t lose a “normal” child. To the contrary, we gained so much! We gained affirmation that there was a solid reason for her delays. We gained a therapy plan. We gained an incredible support system in the autism community, and most of all, we gained insight and perspective into our child’s beautiful mind.

I won’t be angry with you if you respond with “I’m sorry” because I realize the intention is not a negative one. Most of the time, it’s just a knee-jerk reaction. Perhaps what you were trying to say is that you are sorry we’re dealing with so much, right now. Please, don’t feel that way. It may be overwhelming at times, but I’m not sorry.

daughter smiling, black and white photo
When I say the words, “My daughter has autism” and you respond by saying “I’m sorry,” please know it does make me sad. It hurts me that you might think I view my daughter’s diagnosis as a burden. It is not. To the contrary, the countless appointments and therapy sessions over the past several months have been a blessing. They have given me extra time to bond with a pretty amazing person!

Don’t be sorry for me, for there is no reason. In this situation, I am sorry for you. I’m sorry you don’t know her like I do.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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Legoland to Make Park More Sensory-Friendly for Kids With Autism

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Today Legoland Florida announced they are partnering with Autism Speaks to make the amusement park and resort in Winter Haven, Florida, a more sensory-friendly place for children on the spectrum.

The park is currently installing “a large panel of hands-on, sensory-stimulating activities in a quiet space,” according to a blog post on the Legoland Florida website. The park will also have designated “quiet rooms,” online illustrations of park attractions so parents can plan ahead, and park maps will be designed specifically for guests with special needs.

Workers at Legoland Florida build a sensory panel for children on the autism spectrum. This is just one of the many improvements they're making to the park as part of their partnership with Autism Speaks.
Workers building the sensory panel at Legoland Florida

A sensory panel for children on the autism spectrum at Legoland Florida's theme park. This is just one of the many improvements they're making to the park as part of their partnership with Autism Speaks.

Park employees will receive bi-annual training with Autism Speaks staff and volunteers, and new hires will receive educational material about autism, reported the Orlando Sentinel.

Autism Speaks applauds the efforts of Legoland Florida Resort to provide special accommodations so that guests on the autism spectrum can maximize their park experience,” Karen Bacharach, senior director of Autism Speaks, told The Mighty.

“We’re helping ensure that our resort is truly built for all kids,” Rex Jackson, the resort’s director of marketing & sales, told the Orlando Sentinel.

In addition to that, in honor of World Autism Awareness Day on April 2, the park will be participating in the “Light It Up Blue” campaign by shining blue spotlights on their entrance arch.

Legoland Florida lights up the entrance arch of their Winter Haven, Florida park blue for World Autism Awareness Day.


A trio of children play with Lego characters at the Legoland Florida park in Winter Haven, Florida

All images courtesy of Chip Litherland Photography Inc. and Legoland 

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What Will Happen When My Son With Autism Is No Longer Little and Cute?

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son standing on balcony looking at pool I went to Walmart the other night with my toddler and my parents. That entire day my son did not want to eat. He just wanted to play and play. While fighting the Walmart crowds and trying to shop, we noticed he was feeling fussy. I blamed it on the atmosphere, noise, people, lights, etc.

As we passed by the McDonald’s section, he ran towards a lady and tried to steal one of her fries (he succeeded). And that’s how we realized he was hungry. Her reaction was super sweet. She told us not to worry and she started talking to him. She even offered to give him the rest of her fries.

I can’t stop thinking about her reaction.

Although I am extremely grateful for her attitude, I can’t help but wonder. She was responding to a cute 4-year-old little boy. What will happen when he is older? What happens when he’s 18 and wants to steal someone’s fries?

Autism awareness is increasing. Again, I’m so grateful for this. But a lot of people only associate autism with toddlers or kids. What about the autistic adults? So often, society mislabels them as “weird,” “different” and even “scary.” All I can think about is how that’s going to be my kid one day. The day will come when he is not cute and little. One day he’s going to be a man. How will society see him? How will society treat an “awkward” man who might not understand social cues? As he’s growing up, my fear is that he will be bullied and have difficulty being accepted.

I watch the show “The Big Bang Theory,” and the last episode was about a birthday party for the character Sheldon Cooper, who many suspect is on the spectrum. It was showing how his friends knew he was different, yet he was accepted. I know this is a fictional story, but I hope it doesn’t have to be. I hope my son will have friends who understand him and love him unconditionally. Until then, all I can do is wait patiently. All I can do is to keep paving the way for awareness and acceptance. Maybe, just maybe, as he grows up, he will be accepted. But isn’t that what all parents want? For their kids to find happiness? For their kids to be loved?

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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New Study Shows What Talking About Emotion Can Be Like for Kids With Autism

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University of Vermont researchers conducted a study of how children with autism respond during different kinds of conversations, and the results may help speech therapists interact with kids on the spectrum. The study, which claims to be the first of its kind, used eye-tracking technology to show how many children on the spectrum will fixate on a speaker’s mouth, rather than their eyes, when a conversation turns emotional.

The study was published in “Research in Autism Spectrum Disorders,” and it used the Mirametrix S2 Eye Tracker system, which follows infrared light after it bounces off the retinas. The Mirametrix system combined with Skype helped researchers track the visual attention of neurotypical participants and compare them to participants on the spectrum. Participants were between the ages of 6 and 12, and they had conversations with adults about mundane topics and then topics focused more on feelings.

Tiffany Hutchins is the assistant professor of communication sciences and disorders at the University of Vermont, and the lead author behind the study.

“What you talk about really matters for children with ASD,” Hutchins wrote in the study, according to an article on the UVM website. “You just change a few words by talking about what people do versus how they feel and you can have a profound impact on where eyes go for information.”

“Talking about emotions is really hard and very draining for children with ASD,” Hutchins continued. “It’s like driving in a snowstorm. Normally, when you drive around in good weather on a familiar route, you go on automatic pilot and sometimes don’t even remember how you got somewhere. But for a child with ASD, having a conversation, especially one about emotions, is more like driving in a snowstorm. In that situation, you are totally focused, every move is tense and effortful, and your executive function drains away. In fact, we found that decreased working memory correlated with decreased eye fixations.”

Hutchins and her co-author Ashley Brien only found two other studies that used eye tracking to examine social attention during conversations, but none with autism. “We were amazed that no one had done this yet,” Hutchins wrote in the study.

Hutchins told The Mighty previous research examined how children observed videos of people or how they looked at photographs of people and social scenes. “We were able to get at what children did during actual conversations,” she said in an email.

Brien was a graduate student at the time of the study, and she is now a speech pathologist. Both she and Hutchins believe their findings should be taken into consideration by speech therapists and other special education teachers.

“We are not particularly favorable to the insistence of some professionals that children with ASD be compelled to initiate and maintain and sustain eye contact during conversation,” Hutchins added in her email to The Mighty. “We think there is a potential for negative knock-on effects particularly with regard to executive function. Long story short, we want to be very wary about that recommendation…What is the child really getting out of that? Is it helping? Could it be hurting?”

h/t Medical Xpress

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10 Issues People Want to Shed a Light on for Autism Awareness Month

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For Autism Awareness Month this April, we asked members of our Mighty community: “What’s one issue you’d like to shed a light on for autism awareness? We’ve included some of their responses below.

“Just because when I was a kid I acted differently than I do now as an adult doesn’t mean I don’t have autism anymore. I’ve just learned new ways to cope and accept it.” — Arianna Lea Nyswonger

“After many meetings with all the therapists sitting around, talking about all the things wrong, all the reports in your hand and tears in your eyes, I wished, can’t you just stamp ‘awesome kid’ on the top of these papers? I said that to his doctor one day, and she said a diagnosis doesn’t take away from how awesome my child is. Parents need to know it does not take away from the awesome, beautiful child you have.” — Rachel Laso

“Every child is totally different, even children in the same family. Girls are also on the spectrum. And just because your friend of a friend’s child has autism does not mean that my child will act the same.” — Victoria Meyr Campbell

“We need to see the person and not assume if we know one person with autism, we know all people with autism.” — Donna Lankford

A quote by Donna Lankford that reads, We need to see the person and not assume if we know one person with autism, we know all people with autism.
10 Issues People Want to Shed a Light on for Autism Awareness Month

“There is a total lack of services for autistic adults ranging from job placement, independent living and healthcare.” — Nell Rus

“Before we knew we were different, we thought we were doing things ‘correctly.’ What seems like misbehavior is most likely confusion and frustration.” — Andrea Davis

“I would like people to stop trying to un-diagnose my son if they have no training or experience with autism. Please don’t try and convince me his diagnosis means nothing because he can make eye contact with you.” — Jonathan Wuori

“As an adult who has a late diagnosis of autism living in Australia, there is virtually no support. All funding, as well as most services, is aimed at kids. Those services that are aimed at adults are expensive.” — Chris Ison

“There is a wide variety of people on the spectrum. Nobody ‘looks autistic.’” — Rebecca Huff

“We are humans who still love, feel pain, achieve, fail and have dreams, desires and passions like anyone else.” — Pat Hamm

A quote by Pat Hamm that reads, We are humans who still love, feel pain, achieve, fail and have dreams, desires and passions like anyone else.

Editor’s note: Answers have been edited and shortened for brevity and clarity.

What would you add to this list? Share with us in the comment section below.

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