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.”

boy sitting on slide
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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Applied Behavior Analysis Therapy for Kids With Autism Will Be Mandatory Benefit for Federal Employees

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Starting in 2017, all health insurance plans within the Federal Employees Health Benefits Program — covering federal employees, retirees and their dependents — must include applied behavior analysis therapy (ABA) for children with autism.

A letter sent last week from the U.S. Office of Personnel Management (OPM) Healthcare and Insurance to carriers read:

Carriers may no longer exclude ABA for the treatment of autism spectrum disorder (ASD). We expect all carriers to offer clinically appropriate and medically necessary treatment for children diagnosed with ASD.

ABA therapy is “the process of systematically applying interventions based upon the principles of behavior theory to improve socially significant behaviors, including reading, academics, social skills, communication and adaptive living skills, to a meaningful degree.”

“[The Office of Personnel Management] has closely monitored both the research supporting ABA and the provider supply which has increased in recent years,” OPM spokesperson Edmund Byrnes told Disability Scoop. “Our 2017 requirement reflects the needs of our members, the growing number of qualified providers who can safely and effectively offer ABA, as well as research linking behavioral interventions for children with ASD with positive outcomes.”

Scott Badesch, President/CEO of the Autism Society of America, told The Mighty his organization likes to see more and more insurance coverage for “important services for helping individuals living with autism each day.”

We encourage parents of younger age children to get as much reliable research on various treatment efforts and talk with professionals on the merits of each treatment and support in terms of helping their child maximize their quality of life,” he said in an email.

h/t Disability Scoop

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Cop Steps Up When Boy's Public Meltdown Is Mistaken for Kidnapping Incident

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Tara Keegan was in the process of transferring her 8-year-old son Caleb to his tutor’s car near a convenience store in Clayton, North Carolina, last month when he had a meltdown. Caleb, who has autism, bolted from the parking lot and ran towards the road. After chasing after her son, Keegan carried him back to their car. A concerned eyewitness called the police fearing a child abduction was in progress. Clayton police officer Jeff Young arrived on the scene.

After asking Keegan and Caleb some preliminary questions, Officer Young and his partner gave the two plenty of space to get settled back in the car.

He (Young) could have made a bad situation worse,” Keegan told the town’s official website, townofclaytonnc.org. (When Caleb was 6, the family had an unpleasant experience with a law enforcement officer after he’d eloped from home.) “Instead, Officer Young spent upwards of an hour with Caleb, and it really made him feel safe.”

Keegan told The Mighty she had no problem with the bystander calling the cops, as what was unfolding very well might have looked like a kidnapping. After Caleb calmed down, Young gave him a tour of the Clayton Police Department and introduced him to the department’s K-9 officers, Abel and Major.

“People like (Officer Young) not only change lives, but they encourage others to meet people where they are without shame or judgment,” Keegan wrote in a thank you note on her Facebook page, according to townofclaytonnc.org. “In fact, my son said, ‘I liked that cop ’cause he didn’t say I was bad or not normal.’”

On Friday, Keegan shared the story during a breakfast meeting at the Clayton Chamber of Commerce, where she thanked Officer Young, who was in attendance. Keegan sent The Mighty a copy of the speech she read. She praised Young for handling the situation and for helping her speak out about her son.

“Officer Young was the first person Caleb has come into contact with that accepted him and made him feel special,” she wrote in the speech.  “I am used to people having ridiculous opinions, notions and advice; he had none of that. He just had empathy and grace. A lot of feelings go along with having a child with autism – feelings you certainly don’t share with many. To put Caleb’s diagnosis on public display has been huge for me in both healing and accepting. Officer Young is a major contributor to me being able to do so.”

“Law enforcement and EMTs need to be aware of how these children operate,” Keegan told The Mighty when asked what other cities and states can do to follow Clayton’s lead.

It was before 9 a.m. on a Monday, and Tara Keegan hadn’t even had her coffee yet. Inside a local convenience store, her… Posted by Clayton Police Department on Monday, February 29, 2016

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To the Young Adult Newly Diagnosed With Autism

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Dear Newly Diagnosed Autistic Young Adult,

I remember being in your shoes. I remember being diagnosed the day before my 18th birthday with Asperger’s syndrome. I remember being dumbfounded. I remember being in denial. I remember being confused. I also remember being angry and not being able to make sense out of how in the world someone like me, who got stellar grades, worked my behind off, and was happy exactly how I was… I didn’t understand how someone like myself could possibly be…. autistic. Truth be told, I was fighting hard against many of my own previously hidden biases against people who’ve been labeled “autistic” or having “special needs” or any of their like counterparts in terms of labels.

I always thought of individuals with autism as only being the way I remember classmates who had “classic” autism behaving. I didn’t see myself as being “significantly” socially challenged, nor did I view myself as having “special needs” simply because others didn’t see the world the way I did. In my mind, others had an obligation to conform to my view of the world, my way of interacting, my sensory overload reactions, etc. I didn’t see myself as living with the level of deficit others were telling me I exhibited.

I took about a week to gather my thoughts, to cry my tears and to process this new information with my parents before I allowed them to share my diagnosis with any family or friends. Before I decided I wanted to continue my lifestyle of living life as an “open book,” I allowed myself to grieve the life I thought I’d had, and suddenly found myself feeling as though I were losing. Once I felt I’d had enough of my personal grieving time, I decided to take life by the horns and type a Facebook status formally informing my friends and some family that I had received a formal diagnosis of autism. Posting that status was nerve-wracking, and I was afraid of the judgment I believed I would receive in return for my honesty. Much to my surprise, I received nothing but positive reactions, encouragement and thanks for my bravery in sharing my new reality with my little world on Facebook.

The moral of my story is that an autism diagnosis does not change who you are. It doesn’t change your personality or the features people love about you. It doesn’t change your future or what you can do with it. An autism diagnosis is just a guide and a tool to help you better understand yourself. A diagnosis of autism helps you and those around you better understand why you do what you do in terms of social interactions, behaviors in general, sensory processing challenges and much more. A diagnosis is an aid to you, those you love and those who try to help you. Stay strong, and remember this is a beginning, not an end. 

Sincerely,
Autistic Too

Woman sitting next to a pond in a park

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.

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Family Opens Gym for People on the Autism Spectrum

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When Adam and Dedra Leapley’s son was about 15, an active lifestyle was difficult to maintain.

Like with many others on the autism spectrum, places like gyms and organized sporting events could often be overstimulating and uncomfortable. The Leapleys tried to hire a personal trainer but struggled to find a perfect match — until they met a trainer whose sister was also on the spectrum. Their son, now able to connect with someone who better understood him, began to find joy in fitness, and his healthier lifestyle seemed to help in all areas of his life.

“It was like a transformation,” Adam Leapley recalls. “It was eye-opening for me.”

Thrilled with the positive impact of exercise, the Leapleys asked themselves, Why isn’t there a fitness center for people with autism spectrum disorder? 

Their answer was to open their own. In June 2014, ASD Fitness Center, a 5,000-square foot facility, opened in Orange, Connecticut.

ASD fitness center logo
Photo courtesy of ASD Fitness Center
Organizers cut ribbon on opening day of ASD Fitness Center
Photo courtesy of ASD Fitness Center

The ASD Fitness Center offers small group classes and one-on-one sessions for people ages 5 and up on the spectrum, and their families. Most members are between the ages 10 to 17, but adults on the spectrum also attend. Its eight trainers all have backgrounds in working with people on the spectrum, which Leapley says is key to their success. They provide personalized individual fitness programs (IFP) with options to add nutrition and life skill goals (like riding a bike). Group classes include adaptive yoga, hip-hop, karate and circuit cardio. The gym itself has sectioned workout stations to provide privacy. Its walls are beige, there’s no bright lighting, music, and mufflers under the floor help tone down echoing sounds. They also passed on the typical “speckled” gym floors (usually chosen to hide dirt) and just clean more regularly.

“We try to keep it as calm and comfortable as possible,” Leapley told The Mighty.

lower body station at ASD Fitness Center
Lower body station at ASD Fitness Center
student takes adaptive karate
Young gym member taking adaptive karate at ASD Fitness Center

Right now, 84 families are members; Leapley anticipates that number capping at about 110-120, based on available resources and space. Some members travel up to an hour to work out. Leapley’s son, now 20, works at the gym; and they hope to hire more people on the spectrum.

To make all this possible, Leapley, who’s also an investment manager, gets help from an advisory board that includes pediatricians, professors, therapists, special educators, fitness CEOs and more. He credits Dr. Fred Volkmar, of the Child Study Center at Yale University School of Medicine, for taking interest when the fitness center was merely an idea.

A few gyms around the country exist for toddlers and young children on the spectrum; others offer programs, sessions or special events for older children and teens with autism, but as far as Leapley knows, the ASD Fitness Center is the first of its kind in the U.S.

He says the next step is getting into schools and training educators in adaptive physical education (PE). Though schools are required by law to accommodate students with special needs, unfortunately, Leapley says these efforts often aren’t executed well. Trainers from his gym are working to help educators understand how to motivate students on the spectrum in comfortable, appropriate ways so these students can be included and get daily exercise at school.

“Our goal is to reach out to as many people as possible,” Leapely told The Mighty.

For more information, visit the ASD Fitness Center’s website and Facebook page.

h/t Hartford Courant

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Book Follows Autistic 6-Year-Old's Journey in International Art World

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Iris Grace made headlines at the age of 3 when the Internet took note of her incredible paintings. She caught our attention again in 2014 when photos and videos of her therapy cat Thula went viral. Now, at 6 years old, Iris is in the news yet again, thanks to a famous client purchasing one of her original paintings.

Iris, who has autism, has sold nearly two dozen pieces to private art collectors across the world over the last two years, her mother, Arabella Carter-Johnson, told The Mighty. Angelina Jolie recently bought one, according to Iris’ website, and Carter-Johnson just published a book chronicling the balance between her daughter’s journey on the international art scene and life at home.

Carter-Johnson told The Mighty she wanted to show others what it is like to parent a child with autism, but also to show that “there can be a future … a bright one.” The book, simple titled “Iris Grace,” features images of Iris’ paintings, images of her in action and diary entries from Carter-Johnson.

Iris Grace Carter-Johnson painting

Original Art by Iris Graceon
“Dancing in Snowflakes” by Iris Grace

Carter-Johnson explained that her daughter knows about the reach her artwork has, but the family tries not to make too much of a fuss about it. “Iris knows people have bought some of her pieces for their homes so they can enjoy them every day, but we do protect her from the media,” Carter-Johnson told The Mighty. “There are a great many paintings that we would never sell, as they mean so much to her.”

Carter Johnson says she’s seen Iris’ confidence soar over the last few years, and she also credits her daughter’s progress to the introduction of her therapy cat, who was introduced to the family two years ago.

Iris Grace Carter-Johnson painting

Under The Sea by Iris Grace
“Under The Sea” by Iris Grace

Though she has sold original paintings to art collectors in South America, Asia, Europe and the United States, Iris hasn’t had an official exhibition, and her mom isn’t pushing it. For now, Iris’ parents want her to continue using painting as a way to share her voice with the world. “If we stretch ourselves too far, we will lose what we have worked so hard on, which is following Iris’s lead,” Carter-Johnson told The Mighty. “That’s what this was always and will always be about. That’s what the paintings mean, they are a way for Iris to express herself and for us to connect.”

Iris Grace Carter-Johnson

Trumpet by Iris Grace
“Trumpet” by Iris Grace

“She is happy when she paints, sometimes elated, excited, then at other times it calms her,” Carter-Johnson told The Mighty. “For me, I hope this book spreads a message of hope and how different is brilliant.”

“Iris Grace” was published in hardcover by Penguin Books on Feb. 25.

Thula Mtwana by Iris Grace Carter-Johnson

Iris Grace Carter-Johnson painting

Thula, Iris Grace Carter-Johnson's therapy cat

Iris Grace Book Cover

Dance to the Oboe by Iris Grace
“Dance to the Oboe” by Iris Grace

For more information about Iris Grace and her art, visit her website, Facebook page and you can order her book on Book Depository.  

All images courtesy of Arabella Carter-Johnson.

h/t Bored Panda

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