What I Want to Tell the Mom Scared of Losing Her Connection to Her Son With Autism

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Eleven years ago this fall, I sat in a cramped, fluorescent-lit examination room with my husband and then 17-month-old son. We were there following a several-month wait for what we assumed would be an autism diagnosis. A few months prior, our pediatrician had shoved a few ill-copied articles with the word “autism” in the title, practically pushed us
out the door and told us to consult a developmental pediatrician.

I had been alone at the appointment as it was just a routine sick visit related to my son’s reflux, and it had been the first time our pediatrician had shown any concern regarding our son’s development. I remember clutching those articles to my chest, placing my son Justin in his stroller and stumbling out the door, hot tears wending their way down my cheeks as other moms stared at me.

It was a day no amount of chocolate could mollify.

Our visit to the developmental pediatrician was in sharp contrast to that day, as she couldn’t have been kinder as she assessed our boy. She made a point to single out all the skills he could do and emphasized how obviously attached he was to both me and my husband. She gave Justin a diagnosis of PDD (pervasive developmental disorder) that morning and told me to follow up in six months.

I remember the diagnosis came along completely coupled with relief that we had an answer to his differences.

I say almost because that diagnosis also brought with it fear that he’d regress, that we’d lose that special closeness we’d created for a year and a half all those long, sleepless nights. I was too afraid to ask during our visit if we’d be in danger of losing that unique connection; I managed to relegate that fear to the darkest recesses of my mind.

And I wish I could go back in time and tell that scared mom that her fears would be unfounded, for I can’t even count the ways my son shows his love.

There is the ceremonial “blowing of the kiss” from his bus window.

The times he stops what he’s doing and just plants one on me for no apparent reason.

The way he comes up behind me and hugs me to show his joy.

The way he curls up on my lap each night like a comma, snuggling his cheek into my shoulder just as he did when he was a toddler.

Eleven years later, our son’s still predominantly nonverbal, and he might never marry, drive a car or live independently. I will forever worry about what will happen to him after I die.

But right now, we have this. An unbreakable connection forged in fire, one perhaps more profound because of his autism, his unique world view.

We have that.

We will always have that.

Follow this journey on Autism Mommy-Therapist.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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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A Boy Wrote My Son With Autism a Note That Led to an Amazing First

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You wrote him a short note saying you thought karting sounded interesting and asked if he could tell you about it. All we can say is thank you. Thank you for giving Anthony the opportunity to write. Thank you for providing him with motivation. Thank you for allowing him to show what he knows. Thank you for giving him confidence in himself. Thank you for showing him someone cares about what he thinks.

As a boy with autism, Anthony’s interests tend to be very focused, and he can have difficulty engaging in conversations or tasks not associated with what he’s interested in. Some people with autism can turn their special interests into an advantage, such as a career, hobby or a way of relaxing. Anthony revels in talking about and doing anything to do with his current special interest, motor racing. What happened when one boy took an interest in Anthony’s topic was, to us, amazing.

Anthony has no problem talking about racing. Indeed, sometimes you can’t stop him. This currently includes being able to script all the highlights of the 2015 Formula 1 season from the television. When he appeared for show and tell in his full karting gear, it was deemed the “best ever” by the class.

What really challenges Anthony at school is writing. Anthony has autism, ADHD, sensory processing disorder and hypermobility. In short, he can find it difficult to hold a pencil, feel what the pencil is doing, concentrate on what he is supposed to be writing and can find it physically tiring. It’s no surprise that Anthony has never written more than a single of page of work at school. He is also very concerned about getting things wrong so he will make sentences short, using small words so he is less likely to get tired or make a mistake. This has hindered his practice and confidence.

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The first page of Anthony’s letter.

But thanks to a friend of a friend from school, Anthony has suddenly surpassed himself.

Following this kind gesture, Anthony was able to let go of worries about getting everything exactly right; he was able to write as he would talk. He produced three pages of words, which talked about karting and showed the world he has an understanding of principles such as counting, friction and forces.

I have transcribed his letter underneath:

To Henry,

This is my Kart. It’s black, it’s very good and it’s got a full tank and it’s got a speedo. I wear a rib protector and a karting suit, and I wear karting shoes, and I wear karting gloves, and I wear a balaclava, and I wear a helmet and I wear a neck brace. These are the tracks I have been to: I have been to Surbiton, Daytona, Clay Pigeon, Rye House, Camberley, Barford Meadows and Thruxton.

My Kart goes very fast. My kart has got an engine and it’s got pedals. It has a radio just for information. Sometimes I drive on my own and sometimes I drive with boys and girls. You have to be a bit older to practice at some tracks. My kart has got very grippy tires and it has got worn-out tires and it has got dry tires.

The dry tires are very slippery because they are very cool. But when I get them very hot they’re going to be faster than the worn-out tires. My kart has got three engines. You do have to be a bit older to do kart races.

Love from,
Your friend**

boy in kart
Anthony in his kart.

Follow this journey on Rainbows Are Too Beautiful.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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.

**This passage has been modified for clarity.

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Autistic Woman Writes Book for Kids Who May Wish They Were ‘Off the Spectrum’

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Rochelle Caruso Flynn was going through a difficult time professionally when a pediatrician colleague told her this: “You understand patients in a way I never could. You should write a book about your unique perspective.”

Flynn, 45, didn’t think too much into it at the time, but the idea stuck in her head. As a woman “on” the autism spectrum, she often felt different; she knew others might view her social behavior as “quirky” or even “inappropriate,” and began to picture a child who desperately wished to be “off” the spectrum. From this, the basic concept of “Floppy Lop-Ears,” an autistic bunny, was born. About a month later, she produced a full-length version of the tale: “Floppy Lop-Ears Tries to Get ‘Off the Spectrum.”

floppy lop ears book cover

In the book, upon learning he has autism spectrum disorder, Floppy Lop-Ears sets out to get off the spectrum. He “tries to make himself ‘better,'” but soon discovers “sometimes being different is the only way to really find acceptance.”

Flynn, from Philadelphia, hopes her story will help children with autism see that, while their challenges may make life more difficult, autism comes with “many positive things that make those who have it special in ways that should be valued, appreciated and even admired.” She also wants people unfamiliar with autism to understand why those on the spectrum may act a certain way — that “inappropriate quirks” are “also incredibly valuable in certain careers or circumstances, and those are the things that should be focused on.”

“Just because someone is different doesn’t mean you should reject them,” Flynn told The Mighty. “Understand them better.”

For kids and teens on the spectrum, Flynn offered this advice:

It [can be] so hard to be on the spectrum sometimes! No one wants to feel different. It is important to trust your family, friends and caring teachers to help you. You have something that makes you unique and special. Value this and participate in therapies that can help you understand the difficult world of social skills. Not giving up what makes you you, but learning how others not on the spectrum talk and act sometimes can help to form a bridge between these two different worlds. Hopefully you have supportive family and teachers or counselors who can help you navigate through and find your own special place in life where your special gifts shine!

Sometimes you have to allow yourself to have a bad day, but having a way to decompress is important. Understanding yourself, your “triggers” for meltdowns, your sensory sensitivities… these can help ease the inner anxieties. It is about finding a balance, pursuing your dreams and never giving up.

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Mom Pens Passionate Response to Shoppers' Comments During Daughter's Meltdown

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Sammi Ovington enjoys shopping with her 3-year-old daughter Skye, but these outings can become stressful if Skye experiences a meltdown. Skye has autism, pica and hypermobility syndrome, and after receiving a number of insensitive remarks from strangers while trying to help Skye through her meltdowns, Ovington took to Facebook to respond.

“To the people just staring at me, whispering to each other and the blatant judging of my parenting, I hope your children don’t have bad days like this,” she wrote in a Facebook post that has now been shared 3,800 times.

Ovington told the Daily Mail she wrote the post when she was angry, but she’s pleased with the response she’s received. “I love taking my little beauty shopping,” she wrote at the end of her Facebook post. “I will not apologize if she is an inconvenience to your shopping trip!”

Read the Facebook post in its entirety below:

Dear passers by,

This is Skye. She’s 3 years old. She has autism spectrum disorder, pica and hypermobility syndrome.

To the lady in Paperchase telling me Skye was naughty, I’m irresponsible and I shouldn’t give her things before I’ve paid for them, thanks for your input. Pica is a disorder where she feels the uncontrollable need to eat non edible things. Skye’s thing is paper. I’m sorry she ate the barcode before we paid but she isn’t naughty and I am not irresponsible.

To the member of staff in Wilko, no I wouldn’t rather take my child who is in the middle of a meltdown outside and come back in a minute. I think that’s what you would rather me do and I am disgusted with your attitude.

To the man trying to get me to change my cable provider, I am already with Virgin, I already think your service is sh*t and can you not see I’m trying to comfort a screaming, scared and upset child?

To the people just staring at me, whispering to each other and the blatant judging of my parenting, I hope your children don’t have bad days like this.

And to the old lady in Sainsburys who told me Skye was too old to be in a buggy and she should be walking, thank you for your input. Skye has hypermobility syndrome. Walking long distances for her is painful. So she goes in a buggy when she is too tired to save her little legs from hurting.

Today was hard. Never felt so judged by so many people. The noise of builders, cars, the beeping to cross the road and music in the shop was all too much for Skye. So she dealt with it the only way she knows how. To cover her ears, shake and cry. She was scared. She was upset. And she was panicking. She was NOT being naughty.

And despite this, I love taking my little beauty shopping. I will not apologize if she is an inconvenience to your shopping trip!

Dear passers by, This is Skye. She’s 3 years old. She has autism spectrum disorder, pica and hypermobility syndrome.To… Posted by Sammi Ovington on Monday, February 29, 2016

I can’t believe the amazing response the post has had,” Ovington told the Daily Mail. “I just wrote it when I was angry and didn’t expect anyone to respond, now for people to say that it’s a great way to raise awareness is just fantastic.”

http://www.dailymail.co.uk/news/article-3474487/Mother-hits-store-staff-told-autistic-daughter-outside-having-two-hour-m… Posted by Clear Skye’s on Thursday, March 3, 2016

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Autistic Photographer Shauna Phoon Captures the Perfectly Diverse ‘Faces of Autism’

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Shauna Phoon never understood why she felt like an “other.”

After nearly a decade of therapy, of trying to understand why she saw and digested the world so differently, Phoon received an autism spectrum disorder (ASD) diagnosis in her early 20s. “I was finally able to put all these pieces about myself together,” Phoon, now 26, told The Mighty in an email. “It was a very cathartic process.”

The photographer from Melbourne grew intrigued by the other autistic people in her life — how similar but how diverse they were to her and each other.

“After years of feeling ‘other’ to everyone else, after years of feeling different and isolated, I finally feel like there are other people who understand the innate sense of ‘unlike’ that I do,” Phoon said.

Around the same time, she found new research from the Center for Cognitive Brain Imaging at Carnegie Mellon University that collected fMri brain scans of people with and without autism. People without autism had consistent activation patterns between different brain regions, while autistic people had inconsistent patterns; each autistic person, as Phoon puts it, showed “a unique pattern of communication strengths.”

The study inspired her to try to capture both the universal experience but wonderfully broad spectrum of autism in photographs — a project that’s become her growing series “The Absence of Normal – Faces of Autism.

self portrait of photographer sitting facing mirror
Self-portrat of Shauna Phoon, 26, photographer behind “The Absence of Normal” | Interests: Rocks (lapidary), making/building/fixing, organizing things, eating all the food. In three words, she describes herself as “contradictory, flicker, odd.”
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Karl Glaser, 25 | Photo by Shauna Phoon, from “The Absence of Normal.”
autistic man smiling, leaning against wall
Karl Glaser, 25 | Photo by Shauna Phoon, from “The Absence of Normal.”

Phoon’s subjects, so far all from Melbourne, range in age, gender identity and race. She asks each person about their interests and to describe themselves in three words. Karl Glaser (above), 25, likes “programming stuff, experimenting with stuff, surfing and skateboarding; and describes himself as a “beady weasel gremlin.” Nathaniel (below), 10, has an interest in blood magic, necromancy, Legos and video games; and describes himself as “evil. king. bear.”

“We are all intrinsically different,” Phoon writes on Tumblr. “What unites us is our exception to the norm.”

boy wearing cape drinks juice box
Nathaniel, 9 or 10 | Photo by Shauna Phoon, from “The Absence of Normal.”
boy in cape poses like superman
Nathaniel, 9 or 10 | Photo by Shauna Phoon, from “The Absence of Normal.”

Even in its early stages, making the project has had its powerful moments — one in particular was caught on camera, but not by Phoon. While photographing Glaser, Phoon’s father texted her that her dog was sick. She put down the camera and sat on the sidewalk next to Glaser to process the news. Her partner photographed the scene, noting the two looked like “two children who lost their ice cream.” Glaser later gave Phoon a lift home so she could spend the last 10 minutes of her dog’s life with him in her arms. Phoon says if he hadn’t driven her, she would have missed it all. Despite the sad story behind it, Phoon cherishes the photo below.

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Glaser (left) and Phoon

“It feels like a moment of solidarity and kinship to me,” she told The Mighty.

Which is sort of the point of the whole project.

“I love and admire all the different ways in which we appear on the spectrum,” she said, “and I hope to be able to capture the appreciation and solidarity I feel for my autistic ‘siblings.'”

man smiling, black and white photo
Falan Sol-Avar, 32. Interests include writing, deconstructing complex systems (to “fix” them), experimenting, living forever, creating utopia (and getting kicked out). In three words he’d describe himself as “Borg. Resistance. Mastermind.”

Phoon hopes autistic people who find her project will see others who, in ways, look and act like them, but still own their individuality. “I want them to see there isn’t a ‘right’ or ‘wrong’ way of being autistic,” she said.

At the same time, she wants the portraits to defy how the media usually portrays autism.

“We are not just [a] stereotype,” Phoon said. “We don’t need to be ‘cured’ or ‘fixed.’ Our differences make us unique but no less deserving of acceptance and love.”

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Kelly Nicholas, 32 | Photo by Shauna Phoon, from “The Absence of Normal.”
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Kelly Nicholas, 32, has interests in reading, video games, costuming, acrobatics and dance. Nicholas is a non-binary genderqueer. | Photo by Shawna Phoon, from “The Absence of Normal.”
photographer's grandfather
Phoon’s grandfather, “who is definitely on the spectrum. I like to think of him as the river from which my autism flows.”

If you would like to participate in Phoon’s project, head here. She is actively seeking more subjects. For more photos from this series, head here.

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When a Boy Asked Me If I Was Sure My Son Has Autism

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Today, my son Braeden and I took advantage of the warm weather and ventured to the park after his school day ended. The park is a place I enjoy best when it’s just Braeden and I for many reasons.

For the first hour, I hovered close to watch Braeden attempt to join in with other children or just say “hi” to introduce himself. After several rejections, relentlessly he succeeded and was now “it” in a game of tag. The excitement of being “it” overcame him with a smile so bright, and he played the game with the intent to never not be “it.” To the little girl whose four small words screamed acceptance — “Hi, what’s your name?” — thank you!

toy and wristband

Shortly after the game started, I observed small interactions between Braeden and his newfound friends. One boy grabbed Braeden’s autism safety alert wristband and exclaimed, “What’s this?” Proudly, Braeden responded, “It’s my wristband that says I’m a boy with autism.” The boy turned to me and said in surprise, “He has autism?” I smiled and simply said, “Yes,” not knowing the earful I was about to receive.

This boy, who was no more than 10 years old, began to assure me that my 7-year-old son with autism was very lucky. I thought, how nice of him to say — but that thought was shrouded by what followed. “He’s smart, are you sure he has autism? And my mom says autism comes from vaccines. Was he vaccinated?” I couldn’t believe what I was hearing as I held back my words and smiled because this little boy is 10 and I’m not his mother. It wasn’t easy. As an autism advocate, I wanted to voice my opinion — but I was once 10, and what my parents said was law.

To the vaccination and autism expert of a mother, I wish you were there today so I could understand this theory. It’s one I’ve heard before, but it was recently stated by the Centers for Disease Control and Prevention (CDC) that there is no link between vaccines and autism. To the next parent wanting to explain autism to their child without autism, proceed with caution; your words mean more than you know.

The truth is autism is not easily defined because it’s a spectrum disorder, and although there are similarities among children with autism, the differences set each child apart. If you want help defining autism, I suggest this great book I purchased to teach my own child with autism, “Ethan’s Story: My Life With Autism.” If your child is an auditory and visual learner, try this great video on YouTube, “What is Autism.” Although my favorite awareness educator is my 7-year-old with autism: “Autism means my brain thinks a little bit differently than everybody else, but that’s okay, because it’s kind of cool that I see the world in a beautiful way.”

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Kathleen’s son, Braeden, at the park.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about 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.

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