Mom Responds After a Video of Her Autistic Son's Meltdown Goes Viral

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In 2010, Amie Carter uploaded a video of her son, who was almost 3 at the time, having a meltdown in a parking lot. Now, more than six years later, the video is going viral after talk show radio host Mike Steele shared the video on his Facebook page, captioned “Spare the Rod Spoil the Child,” criticizing Carter’s parenting.

The video, which has now been viewed over 10 million times, shows Carter calmly trying to manage her son. What the video doesn’t show is his diagnoses of autism spectrum disorder, oppositional defiant disorder (ODD), attention deficit hyperactivity disorder (ADHD), intermittent explosive disorder (IED) and bipolar disorder not otherwise specified.

In an interview with SheKnows, Carter explained her daughter was videotaping the meltdown so they could show her son’s neurologist, as he had yet to be diagnosed with autism. When Carter saw her video was going viral, she reached out to Steele to explain the story behind the video.

After hearing Carter’s story, Steele edited his Facebook post, writing:  Michael Steele's Facebook Post

My original post stated “Spare the Rod Spoil the Child” that’s before I learned the truth. Just by observing this mother with her son it appears that it’s a little boy misbehaving and the mother is being patient with her son. Little did I know, this little boy name is Jayden; he is diagnosed with Autism. I didn’t know until his mother contacted me. It’s funny how we can see a video and add our twist to it. Now that we know this piece of info, how would you really react to your child who’s diagnosed with Autism? We probably would have reacted the same way she did… Let this be a lesson to us all and let’s join hands to understand autism as a whole!!! Sorry Amie AND Jayden!!

Since the video has been shared on Facebook, the post has received a number of comments criticizing Carter’s parenting.

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“Autism or not, that a** is still getting whopped,” one comment reads.

Negative comments

“Slap some sense into him,” another commenter writes. “I gave birth to you and I can kindly reverse that s**t.”

Not all comments have been negative, however.

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There is a fine line between tantrum, meltdown, and intellectual disability. If you had any education in psychology, intellectual disability or are able to analyze the situation properly you would know there’s more to the picture just by seeing what’s going on. Most people see a screaming kid and immediately think the kid needs discipline. If it was an adult you would think different. The fact is as people grow up, some learn to control themselves more but still struggle at times, some get worse, some stay the same. Open your eyes a little. Quit being in your own little world. Things are not always as they seem and stop assuming and being so judgmental. People with disabilities process and act differently than people without even if they understand the situation at hand. If you think beating a kid is ok because they are reacting like this kid was just remember. That’s assault. You wouldn’t do it to a grownup and if you did you’d probably get your a** whipped because they would fight back plus their strength during these episodes would surprise you.

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It makes me sad and very upset with the judgmental and ignorant adults who assume things before knowing all the facts! I have a son who is 4yrs old and has development delays border line autistic and I get all the looks cause he looks normal but his speech is not their and he has tantrums I can’t control in public. I just ask that don’t judge the parents till u know all the facts!! Raising a child with special needs is very hard emotionally and physically

“The negative aspect it received only reminds me of how uneducated society is regarding mental illness,” Carter told SheKnows. “To those of you who choose to speak and offer violent solutions based on something they choose to not understand: It breaks my heart to know how hurtful and mean some of you are… I am a Mother Warrior, and I will not stop fighting for my son as well as many others who deserve to be understood.”

Editor’s note: The Mighty is choosing to omit the video mentioned, as watching it is not necessary to the understanding of this story.

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I Will Always Worry About What Will Happen to My Children When I'm Gone

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Recently I posted a piece in my various venues talking about what I’d learned about autism in the almost 12 years since my son Justin’s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly), and although I usually don’t respond to criticism with a “rebuttal post,” this one has been ruminating for a while.

So here it comes people.

In the piece I wrote mostly about acceptance, of coming to grips with what autism means for my eldest son’s life trajectory. One of the things I wrote was the following: “You will learn you’ll always worry about what will happen to them after you die. You will learn to
live with it.”

I stand by those words. I have learned I will always hate the fact I can’t be with him, loving him, protecting him and caring for him his entire life.

But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his challenges so he would live an independent life. All of our therapeutic interventions has not changed the fact that he will most likely need constant care for his entire life. I’ve learned to shelve that fear so it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys. I’ve accepted his need for lifetime care.

There are always challenges in our daily life. His OCD can be daunting, and sometimes he still has aggressive outbursts. But the last few years have been so much better than his earlier ones that I’m often inspired to write about his progress. I’ve been told by
readers I’m naïve, to wait until puberty hits.

And maybe they’re right. I say this without “snark” — perhaps when puberty hits, my
sweet, smart, happy tween will become unidentifiable from the boy we’ve raised in the last few years. Maybe he will turn 21 and there will be no good group home placement for him, no quality “day care,” no money for home respite care.

Or, maybe not.

Maybe Justin will have options like my friends’ adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he’s been his whole life. A grown son of my friend goes to a daycare center he calls “college” and loves it, and lives peacefully at home. Another friend of mine with two adult children
with autism has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives.

And just for the record, the last two examples are of autistic adults living large in Jersey.

Perhaps some of you are thinking, “Sure, Kim, that’s great for them, but you won’t have those pretty choices in eight years.” And despite all the autism initiatives I read about daily, that might be my son’s fate. It’s too early to tell.

But even if I am harassing my husband in eight years I will never regret writing about or living these last few years. I will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, refusals to eat, daily aggression, and a host of other incredibly challenging issues that affected not just Justin but our entire family. I wish I could have known then how much easier life would get.

I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person.

I write for several reasons, and to be perfectly honest with you I write for myself as much as I write for my readers. Writing keeps me from consuming 2 pounds of chocolate daily.
Yup, I need my blog for my physical as well as my mental health.

But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. I know from comments that my missives have helped others, and I’m going to keep at it. I never want
to walk around hollowed out with the fear I felt in the early years.

My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you.

I will never give up pursuing safe, productive, and happy lives for them both.

I will never give up.

Photo via Thinkstock Images.

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Check out our Submit a Story page for more about our submission guidelines.

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What to Know About the 4% of U.S. Movie Theaters That Offer Sensory-Friendly Screenings

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Loud noises, bright lights and foreign smells can make going to the movie theater or seeing a live performance an overwhelming experience for those with autism spectrum disorder. To make showings more inclusive, an increasing number of theaters across the country are now offering “sensory-sensitive” screenings of movies and performances for people living with autism.

“Many people on the autism spectrum experience intense anxiety and heightened sensory sensitivity,” Lori McIlwain, Co-founder & Board Chair of the National Autism Association told The Mighty. ”By making a few simple adjustments, movie theaters can give individuals on the spectrum the opportunity to enjoy a film without judgment or fear.”

According to the Autism Society, approximately 3.5 million Americans live on the spectrum – a huge market for the cinema arts world to tap into. Sensory-sensitive screenings began in 2007, with AMC Entertainment, the second largest cinema chain in America.

Since 2007, AMC has expanded their program to include 175 cinemas in 33 states, about half of their cinemas. Other cinema groups are starting to broaden their offerings as well. The largest cinema chain, Regal Entertainment Group, offers screenings at about 6 percent of their cinemas, 36 out of 565. Smaller chains, like NCG Cinemas, offer sensory-sensitive showings at all 20 of their locations.

Shows billed as sensory-sensitive often include accommodations such as lowered volume and raised lighting. Other theaters skip the previews and make accommodations for special dietary needs. Allowing families to bring their own food is another way theaters can make themselves more accessible, McIlwain said.

Of the cinemas that have sensory-sensitive offerings, most films are geared towards children and families – limiting showings to one children’s movie playing one morning a month. Others offer more frequent showings once a week or several times a month, as well as discounted tickets. AMC is one of the only theater groups to offer screenings for adolescents and adults with autism, occasionally playing movies rated PG-13 and R.

“It’s important to allow individuals with autism to be in a comfortable, low-stress environment where they can simply be themselves,” she said. These screenings all act as a judgment-free zone where patrons are allowed to get up, make noise and act in ways that may otherwise be regarded as disruptive. Because of their relaxed environment, sensory-sensitive screenings can benefit more than just those with autism. Relaxed screenings can also benefit those with learning disabilities, movement disorders, young children and their families, as well as those with neurological conditions like Tourette syndrome.

Movie theaters aren’t the only venues increasing their reach. Playhouses and other performing arts venues are also looking for ways to become more inclusive. Earlier this month, playhouses in New York and California hosted relaxed performances of “Backstage in Biscuitland,” a show about life with Tourette’s. In December, the California Ballet will become the first West Coast dance company to offer a sensory-sensitive production of “The Nutcracker.”

Inclusivity is key, McIlwain said. “We’re happy to see movie theaters promoting inclusivity and hope more will follow suit.”

Have you seen a sensory-sensitive movie? Share your experience in the comments below.

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When My Visible Illness Hides My Invisible Disability Advocacy

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Hi! I’m Lydia.

I’m a young adult with mitochondrial disease (mito). Mitochondria are in every cell, and they produce energy for the whole body. Well, yours do, but mine don’t do such a great job. It’s like using an iPhone with only 30% of its battery left and realizing your charger is faulty. In a human, that “low battery” means that my organs don’t have enough energy to do their jobs. I might qualify as bionic, as I have an insulin pump, a feeding tube, an ileostomy, and a central line (a permanent IV that goes in by my collarbone and ends at my heart). I have had many ER visits and hospital stays, surgeries, and procedures. I was in a nursing home for over a year (where no 25-year-old should have to be!), but I live semi-independently now, with an aide during the day and one-to-one nursing at night.

I got my master’s degree in English and nonfiction writing while in the nursing home. Unlike most vocations, writing/editing aren’t affected by unexpected hospital stays, broken sleep, or long periods when I can’t leave the house. It keeps me busy and engaged with other people and outside events. My apartment may be tiny, but my world is limitless!

What you just read is the biography of a disability advocate. There are a lot of ways to advocate, but I like to share my experience and answer questions so parents and teachers can do the very best for their kids.

Lydia Wayman.
Lydia Wayman.

While I do think it’s important for people to be aware of mito and other illnesses and disabilities, that’s not why I advocate. Awareness is important, but it’s not possible for everyone to know about every issue. Instead of specific signs and symptoms, I try to challenge people to see past assumptions and stereotypes and give others a bit of grace and a lot more respect.

Sometimes, disability feels like an invitation for assumptions and stereotypes. I spark attention because people can see my lines, tubes, pumps, dressings, and so forth. But to me, the “hardware” is just another part of my body. I’m so used to it, I don’t even see it when I look in a mirror. I always forget it’s the first thing most people see. If I were about to present at a conference about disability, and you took a seat in the audience, you would be sitting there waiting to me to delve into certain topics. After all, it’s a presentation about disability, and I’m at the front of the room in a wheelchair!

I would probably throw you for a loop when I started to speak. What if I told you that mito hardly comes up in my advocacy work? When I write and speak to groups, the bio I submit for the program reads more like this:

Lydia Wayman is an autistic advocate with a B.S. in education and an M.A. in English and nonfiction writing. Her presentations, writing and art use her experience to educate others about autism. She is a young leader with the Autistic Global Initiative and has lead youth with disabilities at a leadership conference and spoken to scout troops, parents, and several times at OCALICON. She contributes her writing about autism to magazines, books, and newspapers. Lydia enjoys mentoring younger autistic friends and supporting families by helping them understand how their kids see the world.

Mito might be what you see, but it’s not who I am. If I were to stop the pumps and disconnect the lines, you wouldn’t see mito. Autism is different. It’s a part of every thought and feeling and experience. That’s why I focus on autism in advocacy. I don’t care if you understand the medications I take, but I hope by knowing who I am, how I see the world, and why I’m different, others will take a step toward accepting the differences in all people.

When I talk and write about autism, I tend to focus on sensory issues, communication, and the impact typing has had in my life. I show how assumptions about my behavior are usually wrong. Overall, my goal is to help other people see that they never know the whole story about someone else. I do want people to understand autism — and mito — but I’d much rather people understand how off-base and harmful quick judgments can be. That would definitely help the autism community, people with serious illness and everyone else.

The next time a disability advocate rolls into town for a presentation, she may come in a wheelchair loaded with pumps, medicine, and tube feeds… so she can talk to you about autism. The next time you hear a child screaming in the grocery store, you see a person stand up from a wheelchair to reach something, or if your friend cancels plans yet again because she doesn’t feel well, remember that what you see is never the whole story.

Follow this journey at Autistic Speaks.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your disability, disease, or mental illness. How did you react, and what do you want to tell people who hold this misconception? Check out our Submit a Story page for more about our submission guidelines.

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'Mommy, I Read There Is No Cure for Autism'

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Kaydence and her younger sister, Piper
Kaydence and her younger sister, Piper

It’s not unheard of for my oldest daughter to worry. It’s actually quite the norm. She is 9 years old and incredibly bright and insightful. These qualities seem to come with a certain degree of personal cost, though. She’s easily overwhelmed and worried by things that wouldn’t register as a blip on the radar for a typical pre-teen. I’ve spent many nights trying my best to calm her fears as she’s sat in bed, worrying about things like the Ebola outbreak and acts of mass violence in school. So, the other day, when I sensed her anxiety and asked her to tell me what was on her mind, I wasn’t expecting her answer to be so deeply personal.

“Mommy, I read in a book that there is no cure for autism. That makes me really sad for Piper.”

For a moment, I was at a complete loss for words. My silence seemed to deepen her sense of worry, and she followed up with “Is that true, Mom? Is she going to be OK?”

Before I could find the right words, my husband carefully explained to her that autism is not a disease and should not be viewed as such. More importantly, he assured her Piper is and will continue to be just fine. This seemed to satisfy her for a moment, but the proverbial wheels were turning. A few minutes later, she pressed us further.

“If it’s not a disease, then what is it?”

By now, I’d recovered enough from my thoughts to add to the conversation.

“People who have autism don’t need to be cured, Kaydie, because there is nothing ‘wrong’ with them,” I offered. “They just experience and process things differently. Instead of searching for a cure or a fix for something that isn’t broken, there needs to be a greater effort to understand how people like Piper see the world. Then, we can learn to relate and communicate in a way everyone understands.”

I went on to explain that Piper spends so much time in therapy not in an effort to be cured, but rather, because she was having difficulty showing and telling us how she was feeling. I did my best to explain that helping Piper express her thoughts and feelings is an important part of understanding autism, as a whole.

I hoped, in that moment, this was enough of a learning experience to ease her anxiety over her sister’s future. It seemed to be. She went back to the movie she’d been watching with her siblings, seemingly satisfied with the conversation.

I was the one left exhausted and saddened by this brief exchange. Even though campaigns for autism awareness are everywhere, this conversation left me feeling like we’re fighting an uphill battle. Where, as human beings, are we getting this so wrong? My 9-year-old is a literal thinker, and therefore asks questions about things that don’t make sense to her. How many other 9-year-olds are reading the same literature she read? How many of them stumble upon misinformation like this, take it at face value, and view autism as some kind of incurable disease? If anything scares me about Piper’s future, it is this type of mentality.

Perhaps some of the efforts to raise awareness are misguided. Is it possible we are focusing so much on educating this generation of parents that we are forgetting our children’s generation needs educating, too? As parents of children with autism, we are a community with a voice getting collectively louder and in doing so, gaining much needed attention. But how can we expect our children to be the next generation of advocates if we are not enabling them to understand, as well?

If there is one thing I wish people would stop getting so wrong about autism, it is the notion that those who have it are “suffering” or somehow broken.

I truly believe it’s time we redirect our call for awareness to include our young children. Equally if not more important, we must reach their classmates who have had no firsthand exposure to autism.

If there is a lesson to be learned here, it is this: It will be far easier to plan carefully and to lay a foundation which educates children correctly from the beginning than it will be to try to change their mindset later in life. We’re currently fighting our hardest to break through the barrier of preconceived notions about autism. If we don’t give our children a better starting point, we will never progress past this point, ourselves. We will merely pass along to them the same obstacles we are fighting so hard to overcome today.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? Check out our Submit a Story page for more about our submission guidelines.

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This 'Hugging Machine' Aims to Help People on the Autism Spectrum With Sensory Issues

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A Denmark-based company is bringing to market a This photo from Gloria Mundi Care shows a person lying in the OrbisBox. deep-pressure device aimed at soothing the sensory issues of those on the autism spectrum.

The so-called “hugging machine,” originally conceived by renowned autism advocate Temple Grandin, has been dubbed OrbisBox by manufacturer Gloria Mundi Care.

The device allows users to lie on their front, side or back while being squeezed by foam-covered panels inside the box. These panels gently close in on the user at adjustable pressure levels. The OrbisBox can also provide light and sound therapy via color-changing panels that make up its walls and wired-in Bose speakers.

OrbisBox’s goal is to help a person who has difficulty processing sensory information. Those on the spectrum are often either hypersensitive to sensory stimuli or experience minimal responses to the same information. When someone on the spectrum is overwhelmed by too many senses, it can sometimes result in a sensory overload meltdown. A device like this may help in these situations.

The OrbisBox is on wheels and about the height and width of a refrigerator, with a depth of about 7 feet to accommodate a person lying down. It retails commercially for about $51,400 USD but can be purchased for personal use.

Mighty contributor Lamar Hardwick, who is on the autism spectrum, said the price of the machine would deter people from using it.

“The cost alone would limit the number of autistic people who may benefit from its use because it will alienate an entire economic class from having access to it,” Hardwick said.

He also expressed concern about the efficacy of the OrbisBox in actually comforting users.

“The ability to control the machine takes away one of the most important aspects of ‘stimming,'” Hardwick said. “In theory, self-stimulation by individuals with autism works because it is self-regulating. With little to no actual control over the function of the machine, I’m concerned that the results will fall short.”

The Mighty wants to know: Would you try the OrbisBox? Explain why or why not in the comment section below.

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