Sprout Stories

Parents write the book on autism to teach others what they learned

By Rebecca Allen

As I enter the art-making event, Drew Smith recognizes me. He hesitates for a second, reaches out and shakes my hand.

“Hello, Rebecca, nice to see you,” he says, looking me in the eye. (His mother would tear-up to know how well this went.)

This gathering is for children and young adults with autism, and as parents and children arrive, Drew, 20, greets them, too. He rushes toward a man and his teenage son with a hearty “hello” and shakes the dad’s hand. (He doesn’t touch the kid, because he knows.)

At one point, he appears in a crocheted red Santa hat and a matching beard that resembles a pristine mop.

Hours later, he slips into his new black leather jacket (a present from his parents), jingles the keys to his mother’s Hyundai, and heads to his College Living Experience apartment in Costa Mesa.

All of which is normal.

And a miracle – several, in fact.

The Smiths

At 4, Drew Smith still didn’t speak. He couldn’t tell his mom and dad what he needed. He just melted down: A dervish of shrieking, flailing, sobbing; throwing himself on the ground, screaming the only word he knew: “No!”

His parents are writers. His father, Mike Smith, owner of Beard Boy Productions, is an advertising filmmaker. His mother, Debora Smith, was a corporate public relations professional. Their job was to communicate.

But, once, they couldn’t reach their son.

Drew was diagnosed with autism. And Debora and Mike’s dreams for their boy’s life shattered.

They felt very alone and scared.

After years of struggle, they created Autism Resource Mom so no other mother or father would feel that alone and lost. The group holds a monthly support group where parents learn from each other. They host socials to give their children a safe place to interact.

People with Autism Spectrum Disorder often have difficulty reading social cues, and communicating with others. Many focus intently on an interest or topic, exhibit repetitive or odd behaviors, and can be easily upset by a change in routine or a new or overly stimulating environment. The spectrum includes some who are mildly affected by their symptoms and others who are severely disabled.

Drew Smith, right, plays a game with parents Debora Smith, center, founder of Autism Resource Mom and dad Mike Smith, left. and son Drew Smith at home. Debora Smith has drawn upon her experience raising a son with autism to help other parents navigate the often complicated world of raising a child with special needs. The family was photographed on Monday, Febuary 6, 2017 in Santa Ana.(Photo by Ana Venegas, Orange County Register/SCNG)

After Drew was diagnosed, in 2000, Debora decided to leave her career and make Drew her focus.

“When he was 4 and still not talking, I said to myself, ‘OK, we have to do something now. If he had a broken leg, we would figure out what to do. We have to get him what he needs.”’

She worked with therapists and doctors and teachers and principals. She took parenting classes and volunteered in his schools.

They had Drew tested and found that he was sensitive to casein and gluten, proteins in dairy products and wheat. They are like poison to many children with autism, slowing brain function.

“Back then, you couldn’t find gluten-free cookies,” Debora says. “I had to grind my own flour.”

Drew and Debora literally wrote the book on autism: “Teaching My Teacher About Autism.” It is based on their years of dealing with challenges at school and finding solutions.

It’s a simple guide for teachers, students and other parents:

“When my teacher doesn’t try to fix me – ‘cause I’m definitely not broken – he shows me he understands autism,” the book says.

“When my teacher lets me go to my safe place to cool down if I’m upset, she shows me she understands autism.”

Debora emphasizes that her son’s autism doesn’t define him.

“He has matured and grown into a capable and creative human being. He has a sense of humor,” she said. “He appreciates language and is quite a good writer.”

When he has a challenge, they still work together to try to overcome it.

Drew hated showering. He would give evasive answers when his parents asked him about it. He didn’t have time. He forgot.

The behavior is poor hygiene. But the lagging skill could be poor time management. Or he doesn’t plan and shop for shampoo and soap or have dry towels. Or he’s afraid.

“We had to get to the bottom of it. Is it sensory? He always hated having water on his face,” Mike says.

“We have to find out what the lagging skill is and give him a stake in solving it.,” Debora says.

“He’s a problem solver,” she adds, of Drew. “Not an order taker.”

They found, in this case, that Drew’s problem was time management. “He simply would rather watch movies than groom himself,” Debora says, “because I wasn’t there to nag. “

They found a strategy that seems to work: He fills two columns on paper with activities labeled “I have to do” and “I want to do.”

She has studied collaborative problem solving through Massachusetts General Hospital and is on the way to being certified as a trainer.

“I thought I would learn to make him behave better,” Debora says.

“I learned I had to change my parenting.”

Drew has also had some training. He went through a 14-week course called PEERS, sponsored by UCLA, that helped him develop social skills.

“They taught me how to start a conversation,” he says. “How to exit a conversation. How to use my cell phone as a tool to blend in at a gathering, so I had something to do until I could enter a conversation.”

Drew Smith, left, spends an Sunday afternoon visiting his parents. Drew Smith now lives with support in an apartment with a roommate. Debora Smith founder of Autism Resource Mom, draws upon her experience raising a son with autism to help other parents navigate the often complicated world of raising a children with special needs. The family was photographed on Monday, Febuary 6, 2017 in Santa Ana. (Photo by Ana Venegas, Orange County Register/SCNG)

The skills built up to hosting get-togethers at his home, including a Star Wars movie marathon. Many of those attending, including Drew, could recite the movie dialog verbatim.

“Many of our kids have no friends,” Debora says. “They would happily sit in their rooms and play video games.

“They are learning a sense of camaraderie, making friends, learning to advocate for themselves. Things typical people take for granted.”

Drew hosts many of the group’s events, including a comedy night at Improv City in Irvine.

“I enjoy the comedy night,” Drew says. “We are united through laughter. I find something funny establishes connections. They take suggestions from the audience and incorporate them. Afterward we get a soda and talk.”

Although he’s above average in intelligence, Drew may always need support with everyday living skills, Debora says.

For example, he was diligent about cleaning his bathroom in the family home in Tustin. But when he moved to his apartment in Costa Mesa, it was an entirely new experience. He knew how to clean his toilet and sink at home, but he had to be taught all over again to clean the bathroom in his new apartment. The skills didn’t translate.

It’s hard for parents and others to understand, but they are forced to do so.

The couple

Jackson Hart, 17, and Jasmine Brown, 16, are in the room. They met 18 months ago, sitting at a table side-by-side, painting. A teacher asked Jackson what he was painting.

“Logos from my favorite game, Destiny,” he said. Jasmine gasped.

Jackson says it took five minutes, but he finally asked: “Why did you gasp?”

Maybe it was destiny, though not the game. Jasmine isn’t interested in gaming. But that gasp got them chatting. They discovered a lot in common. Now, they hang out a couple of times a week. They talk about Jackson’s writing, or they go swimming, or they just chat.

Jasmine’s hair is cropped near her ears with a profusion of black curls on top, tinged with purple. She radiates cool.

She is not on the spectrum. Her brother, Donovan, is, and she comes to these events with him.

Does living with her brother make it easier for her to understand her friend?

“Not really,” Jasmine says.

But knowing Jackson helps Jasmine understand her brother.

“Sometimes, Donovan says things, and now I know he doesn’t really mean them. Mostly he doesn’t talk to me. And now, because of Jackson, I understand that too.”

What she gets, she says, is that both her brother and her friend are very talented. “Jackson is such a good writer, in fantasy, suspense, sci-fi. Both of them are very smart. Donovan remembers everything.”

If the family is driving by a fast food joint, for example, he will remember a specific dinner there several years ago. He can recite dialog from 1960s and ‘70s-era movies.

Donovan’s mother, Shannon Bryan, says Autism Resource Mom gives the whole family social activities in a welcoming environment. After one of the group’s heart-to-heart sessions for parents, she says, “You leave feeling like you are not by yourself. So many people are dealing with the same things.”

Jackson tries to explain what feels normal to him.

“I have a tendency to laugh out loud for no reason at all. I think of something funny and I laugh! I learned that other people laugh inside.

“I’m different in my brain. And it’s not a bad thing.”

He said he’s learned that others on the autism spectrum do the same thing.

“Now, I’m not alone.”

When Jackson was in primary school the kids pushed him around and bullied him. In middle school, classmates called him “dumb, stupid, fat, slow.”

“It hit me like a rock.”

“I am slow,” he says, explaining that he is slow to run a mile or to complete an assignment. What he didn’t understand is why this spurred his classmates to taunt him.

His mother, Bethany Hart-Loya, says her son wasn’t diagnosed with autism until he was 12.

After he connected with Autism Resource Mom, and especially after he and Jasmine became friends, his mother saw his confidence grow. He joined drama and choir and made good friends.

“Before, he wouldn’t have had the courage to talk to a girl like Jasmine,” Hart-Loya says.

“Autism Resource Mom has been life-changing for our family.”

The visit

Drew is home for a weekend, and he and his mom are sitting at a dining room table.

We are talking about the future. Drew says his passion is film. He studies screenwriting, film as literature and video editing at Orange Coast College. He wants a future as a screenwriter or movie director. One of his “calming behaviors” is sorting his movie DVDs. He brings them out of the office onto the sofa and sorts them by genre or director or by the year they were released.

He has an encyclopedic knowledge of action and of Quentin Tarantino movies. A friend who has a film studio in his home has him over every Monday night. They talk about a film, watch it and then talk some more. Everything from silent films to Hitchcock to other classics.

Mike Smith, left, and son Drew Smith share a love of movies. Mike Smith is a producer who hops to help his son develop skilled related his strengths. Debora Smith is the founder of Autism Resource Mom and has drawn upon her experience raising a son with autism to help other parents navigate the often complicated world of raising a child with special needs. The family was photographed on Monday, Febuary 6, 2017 in Santa Ana. (Photo by Ana Venegas, Orange County Register/SCNG)

He doesn’t see autism as a disadvantage. He sees himself as a role model for the younger kids in ARM.

Asked what he thinks about his future, Drew thinks for a minute.

“I see a nice family of my own,” he says. “I see myself helping out people like me – carrying on the ARM thing.”

It’s just the sort of thing to make a mother cry. So Debora does.


To donate, or to find out more about Autism Resource Mom, please visit their website at autismresourcemom.org