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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Sesame Street Launches Part 2 of Autism Initiative

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In October, Sesame Street launched “Sesame Street and Autism: See Amazing in All Children,” an online initiative providing resources for viewers on the spectrum, as well as educating the general public about autism. A big part of this was the introduction of Julia, an autistic character who Elmo met in an online storybook, “We’re Amazing, 1,2,3.”

On Thursday, Sesame Street released phase two of this initiative — premiering 13 new videos, including a new animation featuring Julia — who’s voiced by a girl on the autism spectrum, according to Frank Campagna, a producer at Sesame Street and popular autism blogger who helped launch the initiative.

Sesame Street’s videos are for kids, parents and educators alike. One series expanded in part two of this initiative features Nasaiah, a little boy with autism who’s learning life skills with the Sesame Street characters.

Sesame Street also released videos featuring parents’ recordings of their kids with autism answering questions like “What do you want kids to know about autism?” and “What are your favorite things?” Hopefully, these provide insight and understanding to people unfamiliar with autism.

“We want everyone to know that children with ASD want to play and be included; they want love, friendship, understanding, and support just like any child does,” Dr. Jeanette Betancourt, SVP of US Social Impact at Sesame Workshop, told The Mighty in October. “We also want people to know that there are a wide range of autism behaviors and experiences because we know that if you have seen one child with autism, you have only seen one child with autism.”

To watch all of these videos, visit Sesame Street’s website.

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Temple Grandin Shares How to Help Students on the Autism Spectrum Thrive

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Temple Grandin paid a visit to the Monarch School and Institute in Houston on March 4, where she took a tour of the facility and spent time with a number of students, both in and out of the classrooms.

The Monarch School and Institute is an “innovative, therapeutic education for individuals with neurological differences,” according to its Facebook page. The facility has a current enrollment of 134 students, ranging from ages 3 to 34, though there is no age cut off for adults.

Robin Rettie, the employability director at The Monarch School, told The Mighty she’d put on an event for Grandin through her own organization, Lighthouse Learning Resources. Rettie asked Grandin if she’d like to stop by the school for a visit, and the autism advocate was happy to oblige.

Temple Grandin Visits The Monarch School and Institute
Image courtesy of Karen LaFleur
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Image courtesy of Karen LaFleur

Grandin observed students in the school’s computer lab and art studio, and watched when some of them learned about the news crew’s camera equipment. She later played a game of kickball with the kids and posed for plenty of pictures with her young admirers. Rettie told The Mighty the energy level was “incredible” and the students were “blown away by Temple’s presence.”

Temple Grandin Visits The Monarch School and Institute
Image courtesy of Karen LaFleur

“Temple shook their hands and asked each of the students a personal question,” Rettie told The Mighty. Some of the students gave presents and art projects to their famous guest. “Even if it was a scribble, she attended to that,” Rettie said. “There was some amazing dialogue between Temple and the kids.”

Temple Grandin Visits The Monarch School and Institute
Image courtesy of Karen LaFleur
Temple Grandin Visits The Monarch School and Institute
Image courtesy of Karen LaFleur

 

Grandin also took the time to chat with Fox 26 Houston, who dubbed her an “autism hero. She explained what she thinks parents and schools can do to help children on the spectrum thrive:

I had to work extremely hard. My mother always knew just how much to push me — to stretch me just outside my comfort zone. Because if you don’t stretch these kids, they don’t develop. But then on the other hand, you don’t throw them on the deep end of the pool.

There needs to be a slow transition from the world of school to the world of work — ideally that needs to start in middle school, but it’s never too late to start. But it needs to be a gradual transition, doing more and more things for people outside the home.

All images courtesy of Karen LaFleur, Director of Communications at the Monarch School and Institute

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'Connections' App Helps Parents Find Resources for Kids on the Autism Spectrum

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After Lamarque Polvado’s daughter Ashlynn was diagnosed with autism, he wasn’t sure what he could do to provide her with the best care — both in the present and the future.

“What do I know about helping a child who has a special healthcare need be successful?” Polvado told local Texas news station, ABC KVUE, of his reaction to Ashlynn’s diagnosis. “I knew nothing about autism. I knew nothing about resources that may or may not help Ashlynn.”

Polvado switched careers and founded CareStarter, which developed the Connections app, where parents can create an account and immediately access local clinics, therapists and community resources for kids with special needs.

“I made this agreement that I would build technology that would empower patients that would help them access care, but in their own way,” Polvado said.

Polvado added that the moment he received his daughter’s diagnosis was one of the most “impersonal experiences of his life.” Polvado told KVUE the doctor entered the room, handed them a sheet of paper with information about autism and left.

“A piece of paper with a lot of grim stats saying to prepare for the worst was not helpful,” he said. “This is my daughter. There’s no eject button. She’s mine and my responsibility and I have to help her find points of care that help her achieve the best she can be.”

The Connections mobile app is currently live in Dallas, Austin, Houston, Waco and Central Texas and available on the Apple App Store for free.

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