Ever wonder how kids with autism see the world? That's all it may take to understand them.

This article originally appeared on 02.19.16


At one of the worst points, she was banging her head on the floor and the walls of her bedroom, raging and crying.

And I was doing the same because I just didn't know what else to do anymore.

Something had triggered a full-on, pupil-dilated tantrum for my then-3-year-old, Emma, complete with hair-pulling and biting — both herself and me.


That's Emma around age 3. That sweet kid having a meltdown? HEARTBREAKING, let me tell you. All photos by Tana Totsch-Kimsey, used with permission.

Feeling just as helpless as I had the last dozen times this happened, I ticked down a mental checklist: Weird food? Wrong clothes? Too hot? Loud sounds? Missing toy? She fitfully stripped down to nothing, finally signaling to me that yes, it was the jammies. She curled up next to me (me, still sobbing) and promptly fell asleep, quiet and stark naked with brilliantly red-purple bruises blooming on her arms.

This is autism. Or one form of it anyway. It has many, many ways of showing itself.

It can be both good and bad. I'll get to the good.

Fully known as autism spectrum disorder, it's a neurodevelopmental quirk that results in various shades of social and behavioral issues. One of the most common challenges across the spectrum is communicating with others; people with autism struggle with the give-and-take flow of conversation, understanding how to interact with others, and processing their own or other people's feelings. They may even seem lost in their own world or unable to express their thoughts or emotions either verbally or nonverbally.

"Lost in their own world" often looks like this. We took over 100 pictures on family picture day, and this was the only useable one.

I have a non-autistic child, too. She's five years older than Emma, and I remember my biggest frustration as a brand-new parent was that I just wished she could tell me what she needed. And it wasn't long before she did: "Mama" quickly became "I have this?" and "Don't like that" and "I can do it myself" and — now — "Oh-em-gee, Mom, get out of my room, please, GOD, ugh!" She's 10; it's fun. She cracks jokes, she rails against gender biases, and she's lined up for honors classes.

But when Emma came along next with an incessant buzz of energy — ripping pages from books presumably for the feel of it, climbing and jumping off tall things presumably for the thrill of it, eating rocks and grass (and just about anything really) presumably for the taste of it — and all of it without being able to tell me anything at all about what she needed ... it took me a long while to understand that autism is not me being terrible at parenting.

What I learned is that Emma calls for a different kind of parenting altogether.


A typical day at home for us includes peanut butter smearing, cabinet scaling, mud eating, and paper ripping. It's a little exhausting sometimes.

Progress actually happened when I let go of what was "wrong" with Emma and started figuring out what to do about it.

Emma was nearly 4 years old by the time she was given an official autism diagnosis. But when the panel of specialists finally handed over their "findings" of autism spectrum disorder after a particularly awful six-hour doctor appointment, I distinctly felt at that point (and still do) that I could not have cared less what they wanted to call it.

The moment of the diagnosis wasn't a big deal to me because it didn't really change anything. By then, Emma was already in speech and occupational therapy and going to preschool, and all of that was helping some. But the autism label did eventually lead us to a kind of therapy we hadn't heard about before.

It's called applied behavior analysis — ABA for short — and that has brought a lot of change.

Some doctors explain ABA as a reward system for when a child does something right, but it's much more than that.

Behavioral scholars and autism experts date ABA treatments back to at least 1968, when a group of university researchers wrote in an introduction for the Journal of Applied Behavior Analysis that ABA interventions could benefit individuals and society.

The treatment is highly individualized, with analysts measuring specific behaviors for each patient, crafting trials to change variables in controlled environments for each patient, and evaluating outcomes for each patient. It's used for both children and adults who have intellectual or developmental issues, and it can help them gain skills in language, socialization, and attention as well as in more educational areas, like reading and math.

And this kid is gonna need more skills than taking selfies ... although she's quite amazing at them, IMO.

ABA is complex stuff. But put super simply, it's empathy on an ultimate level.

It involves patiently observing and trying to understand what a person — often one who can't fully communicate (or even necessarily process the things going on in the world) — feels and thinks.

ABA is putting yourself in that person's place, realizing what is motivating them, and then tinkering with those behaviors using positive encouragement and reinforcement. These are "rewards" of a kind, but not necessarily tangible ones; Emma's greatest motivators are hugs and kisses, high-fives, and tickles.

And wagon rides. And a mom deciding that chewing on a piece of grass to satisfy a sensory need is not so terrible in the big picture.

Even though ABA isn't a new treatment, it's gaining attention recently because of how life-changing the empathetic perspective can be. Agencies like the Centers for Disease Control and Prevention and the National Institute of Mental Health (and several autism-research organizations) recognize ABA as an effective treatment for autism. Plus, access to ABA experts is expanding: Clinics with extensive ABA support and research existed mainly in larger cities for many years, but now services are being offered in places all over the country.

For me, an intensified effort to understand Emma through ABA, and to help her understand her world, changed everything.

She's almost 6 years old now, and these days, she charms just about everyone she meets. She's still mischievous and daring, but she also runs into a room and gives out hugs to everyone there. (Even strangers! It's actually really awkward sometimes.)

Seems like a small thing, but she sings about how Old MacDonald has a cow that moos. (You should hear "Do You Wanna Build a Snowman" ... adorbs!)

She can pick out her own jammies and a book to be read and a toy to keep her hands busy and the perfect spot to cuddle while she winds herself down to sleep. She giggles and beeps noses and plays chase with the dog and likes to announce, "Happy Tuesday!" She's even learning to read and write, which blows my mind when I think of those long nights spent banging heads on floors.

Emma still has autistic-meltdown fits, of course, but I get it now.

Even I have moments where I just can't even. It's really not that hard for any parent or person to relate to that. What's great, though, is that I've noticed how people outside the ABA therapy world — teachers and family and even total strangers — use the therapy, sometimes without even realizing it.

They change how they do things to adapt to what it must seem like from Emma's perspective, and that's how they end up really connecting with her. I find myself, too, exercising those empathy muscles with people other than Emma, and it makes me wonder sometimes:

What if we all did?

Images courtesy of Letters of Love
True

When Grace Berbig was 7 years old, her mom was diagnosed with leukemia, a cancer of the body’s blood-forming tissues. Being so young, Grace didn’t know what cancer was or why her mother was suddenly living in the hospital. But she did know this: that while her mom was in the hospital, she would always be assured that her family was thinking of her, supporting her and loving her every step of her journey.

Nearly every day, Grace and her two younger sisters would hand-make cards and fill them with drawings and messages of love, which their mother would hang all over the walls of her hospital room. These cherished letters brought immeasurable peace and joy to their mom during her sickness. Sadly, when Grace was just 10 years old, her mother lost her battle with cancer.“

Image courtesy of Letters of Love

Losing my mom put the world in a completely different perspective for me,” Grace says. “I realized that you never know when someone could leave you, so you have to love the people you love with your whole heart, every day.”

Grace’s father was instrumental in helping in the healing process of his daughters. “I distinctly remember my dad constantly reminding my two little sisters, Bella and Sophie, and I that happiness is a choice, and it was now our job to turn this heartbreaking event in our life into something positive.”

When she got to high school, Grace became involved in the Leukemia & Lymphoma Society and a handful of other organizations. But she never felt like she was doing enough.

“I wanted to create an opportunity for people to help beyond donating money, and one that anyone could be a part of, no matter their financial status.”

In October 2018, Grace started Letters of Love, a club at her high school in Long Lake, Minnesota, to emotionally support children battling cancer and other serious illnesses through letter-writing and craft-making.


Image courtesy of Letters of Love

Much to her surprise, more than 100 students showed up for the first club meeting. From then on, Letters of Love grew so fast that during her senior year in high school, Grace had to start a GoFundMe to help cover the cost of card-making materials.

Speaking about her nonprofit today, Grace says, “I can’t find enough words to explain how blessed I feel to have this organization. Beyond the amount of kids and families we are able to support, it allows me to feel so much closer and more connected to my mom.”

Since its inception, Letters of Love has grown to more than 25 clubs with more than 1,000 members providing emotional support to more than 60,000 patients in children’s hospitals around the world. And in the process it has become a full-time job for Grace.

“I do everything from training volunteers and club ambassadors, paying bills, designing merchandise, preparing financial predictions and overviews, applying for grants, to going through each and every card ensuring they are appropriate to send out to hospitals.”

Image courtesy of Letters of Love

In addition to running Letters of Love, Grace and her small team must also contend with the emotions inherent in their line of work.

“There have been many, many tears cried,” she says. “Working to support children who are battling cancer and other serious and sometimes chronic illnesses can absolutely be extremely difficult mentally. I feel so blessed to be an organization that focuses solely on bringing joy to these children, though. We do everything we can to simply put a smile on their face, and ensure they know that they are so loved, so strong, and so supported by people all around the world.”

Image courtesy of Letters of Love

Letters of Love has been particularly instrumental in offering emotional support to children who have been unable to see friends and family due to COVID-19. A video campaign in the summer of 2021 even saw members of the NFL’s Minnesota Vikings and the NHL’s Minnesota Wild offer short videos of hope and encouragement to affected children.

Grace is currently taking a gap year before she starts college so she can focus on growing Letters of Love as well as to work on various related projects, including the publication of a children’s book.

“The goal of the book is to teach children the immense impact that small acts of kindness can have, how to treat their peers who may be diagnosed with disabilities or illness, and how they are never too young to change the world,” she says.

Since she was 10, Grace has kept memories of her mother close to her, as a source of love and inspiration in her life and in the work she does with Letters of Love.

Image courtesy of Grace Berbig

“When I lost my mom, I felt like a section of my heart went with her, so ever since, I have been filling that piece with love and compassion towards others. Her smile and joy were infectious, and I try to mirror that in myself and touch people’s hearts as she did.”

For more information visit Letters of Love.

Please donate to Grace’s GoFundMe and help Letters of Love to expand, publish a children’s book and continue to reach more children in hospitals around the world.

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Images courtesy of AFutureSuperhero and Friends and Balance Dance Project
True

The day was scorching hot, but the weather wasn’t going to stop a Star Wars Stormtrooper from handing out school supplies to a long line of eager children. “You guys don’t have anything illegal back there - any droids or anything?” the Stormtrooper asks, making sure he was safe from enemies before handing over a colorful backpack to a smiling boy.

The man inside the costume is Yuri Williams, founder of AFutureSuperhero And Friends, a Los Angeles nonprofit that uplifts and inspires marginalized people with small acts of kindness.

Yuri’s organization is one of four inaugural grant winners from the Upworthy Kindness Fund, a joint initiative between Upworthy and GoFundMe that celebrates kindness and everyday actions inspired by the best of humanity. This year, the Upworthy Kindness Fund is giving $100,000 to grassroots changemakers across the world.

To apply, campaign organizers simply tell Upworthy how their kindness project is making a difference. Between now and the end of 2021, each accepted individual or organization will receive $500 towards an existing GoFundMe and a shout-out on Upworthy.

Meet the first four winners:

1: Balance Dance Project: This studio aims to bring accessible dance to all in the Sacramento, CA area. Lead fundraiser Miranda Macias says many dancers spend hours a day at Balance practicing contemporary, lyrical, hip-hop, and ballet. Balance started a GoFundMe to raise money to cover tuition for dancers from low-income communities, buy dance team uniforms, and update its facility. The $500 contribution from the Kindness Fund nudged Balance closer to its $5,000 goal.

2: Citizens of the World Mar Vista Robotics Team: In Los Angeles, middle school teacher James Pike is introducing his students to the field of robotics via a Lego-building team dedicated to solving real-world problems.

James started a GoFundMe to crowdfund supplies for his students’ team ahead of the First Lego League, a school-against-school matchup that includes robotics competitions. The team, James explained, needed help to cover half the cost of the pricey $4,000 robotics kit. Thanks to help from the Upworthy Kindness Fund and the generosity of the Citizens of the World Middle School community, the team exceeded its initial fundraising goal.

Citizens of the World Mar Vista Robotics Team video update youtu.be

3: Black Fluidity Tattoo Club: Kiara Mills and Tann Parker want to fix a big problem in the tattoo industry: there are too few Black tattoo artists. To tackle the issue, the duo founded the Black Fluidity Tattoo Club to inspire and support Black tattooers. While the Brooklyn organization is open to any Black person, Kiara and Tann specifically want to encourage dark-skinned artists to train in an affirming space among people with similar identities.

To make room for newcomers, the club recently moved into a larger studio with a third station for apprentices or guest artists. Unlike a traditional fundraiser that supports the organization exclusively, Black Fluidity Tattoo Club will distribute proceeds from GoFundMe directly to emerging Black tattoo artists who are starting their own businesses. The small grants, supported in part with a $500 contribution from the Upworthy Kindness Fund, will go towards artists’ equipment, supplies, furnishings, and other start-up costs.

4: AFutureSuperhero And Friends’ “Hope For The Holidays”: Founder Yuri Williams is fundraising for a holiday trip to spread cheer to people in need across all fifty states.

Along with collaborator Rodney Smith Jr., Yuri will be handing out gifts to children, adults, and animals dressed as a Star Wars’ Stormtrooper, Spiderman, Deadpool, and other movie or comic book characters. Starting this month, the crew will be visiting children with disabilities or serious illnesses, bringing leashes and toys to animal shelters for people taking home a new pet, and spreading blessings to unhoused people—all while in superhero costume. This will be the third time Yuri and his nonprofit have taken this journey.

AFutureSuperhero started a GoFundMe in July to cover the cost of gifts as well as travel expenses like hotels and rental cars. To help the nonprofit reach its $15,000 goal, the Upworthy Kindness Fund contributed $500 towards this good cause.

Think you qualify for the fund? Tell us how you’re bringing kindness to your community. Grants will be awarded on a rolling basis from now through the end of 2021. For questions and more information, please check out our FAQ's and the Kindness Toolkit for resources on how to start your own kindness fundraiser.

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