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

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?

Identity

Celebrate International Women's Day with these stunning photos of female leaders changing the world

The portraits, taken by acclaimed photographer Nigel Barker, are part of CARE's "She Leads the World" campaign.

Images provided by CARE

Kadiatu (left), Zainab (right)

True

Women are breaking down barriers every day. They are transforming the world into a more equitable place with every scientific discovery, athletic feat, social justice reform, artistic endeavor, leadership role, and community outreach project.

And while these breakthroughs are happening all the time, International Women’s Day (Mar 8) is when we can all take time to acknowledge the collective progress, and celebrate how “She Leads the World.

This year, CARE, a leading global humanitarian organization dedicated to empowering women and girls, is celebrating International Women’s Day through the power of portraiture. CARE partnered with high-profile photographer Nigel Barker, best known for his work on “America’s Next Top Model,” to capture breathtaking images of seven remarkable women who have prevailed over countless obstacles to become leaders within their communities.

“Mabinty, Isatu, Adama, and Kadiatu represent so many women around the world overcoming incredible obstacles to lead their communities,” said Michelle Nunn, President and CEO of CARE USA.

Barker’s bold portraits, as part of CARE’s “She Leads The World” campaign, not only elevate each woman’s story, but also shine a spotlight on how CARE programs helped them get to where they are today.

About the women:

Mabinty

international womens day, care.org

Mabinty is a businesswoman and a member of a CARE savings circle along with a group of other women. She buys and sells groundnuts, rice, and fuel. She and her husband have created such a successful enterprise that Mabinty volunteers her time as a teacher in the local school. She was the first woman to teach there, prompting a second woman to do so. Her fellow teachers and students look up to Mabinty as the leader and educator she is.

Kadiatu

international womens day, care.org

Kadiatu supports herself through a small business selling food. She also volunteers at a health clinic in the neighboring village where she is a nursing student. She tests for malaria, works with infants, and joins her fellow staff in dancing and singing with the women who visit the clinic. She aspires to become a full-time nurse so she can treat and cure people. Today, she leads by example and with ambition.

Isatu

international womens day, care.org

When Isatu was three months pregnant, her husband left her, seeking his fortune in the gold mines. Now Isatu makes her own way, buying and selling food to support her four children. It is a struggle, but Isatu is determined to be a part of her community and a provider for her kids. A single mother of four is nothing if not a leader.

Zainab

international womens day, care.org

Zainab is the Nurse in Charge at the Maternal Child Health Outpost in her community. She is the only nurse in the surrounding area, and so she is responsible for the pre-natal health of the community’s mothers-to-be and for the safe delivery of their babies. In a country with one of the world’s worst maternal death rates, Zainab has not lost a single mother. The community rallies around Zainab and the work she does. She describes the women who visit the clinic as sisters. That feeling is clearly mutual.

Adama

international womens day, care.org

Adama is something few women are - a kehkeh driver. A kehkeh is a three-wheeled motorcycle taxi, known elsewhere as a tuktuk. Working in the Kissy neighborhood of Freetown, Adama is the primary breadwinner for her family, including her son. She keeps her riders safe in other ways, too, by selling condoms. With HIV threatening to increase its spread, this is a vital service to the community.

Ya Yaebo

international womens day, care.org

“Ya” is a term of respect for older, accomplished women. Ya Yaebo has earned that title as head of her local farmers group. But there is much more than that. She started as a Village Savings and Loan Association member and began putting money into her business. There is the groundnut farm, her team buys and sells rice, and own their own oil processing machine. They even supply seeds to the Ministry of Agriculture. She has used her success to the benefit of people in need in her community and is a vocal advocate for educating girls, not having gone beyond grade seven herself.

On Monday, March 4, CARE will host an exhibition of photography in New York City featuring these portraits, kicking off the multi-day “She Leads the World Campaign.

Learn more, view the portraits, and join CARE’s International Women's Day "She Leads the World" celebration at CARE.org/sheleads.


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Elya/Wikimedia Commons

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