Family battles autism as research continues to look for its cause — and a cure

Friday, December 27, 2013 | 6:00 a.m. CST; updated 12:04 p.m. CST, Friday, December 27, 2013
Daniel Romero-Compain attends Alpha Hart Lewis Elementary and receives one-on-one attention from learning specialists who help him with interaction skills in structured situations. Daniel, who was diagnosed with autism spectrum disorder, often is challenged by new objects, situations and foods.

COLUMBIA — Daniel Romero-Compain lounges on the couch. It's a November evening, and the 10-year-old is home after a day at school.

He's wearing only his underwear, with a Tupperware container of crushed Saltine crackers resting beside him. He always eats his crackers like this, gripping the stack in his hands until it crumbles.

He is eating plain Saltines instead of the family dinner of chicken and rice. He won't sit at the table, but his parents will check to make sure he's entertained elsewhere.

Daniel gets up from the couch and goes into the kitchen. He opens the refrigerator, leaves it ajar without getting anything and returns to the couch. His grandmother, Maria Compain remembers waking up one night at 3:45 a.m. to the fridge alarm going off. The family sometimes has to fasten the door with a plastic lock.

Back on the couch, Daniel fiddles with his iPad, replaying the same few seconds of a YouTube video over and over again, his timing impeccable.

He's good with electronics, mastering the iPad and running the family printer until the cartridge runs dry. Writing his name with a pencil and paper is more difficult for him.

Daniel has an autism spectrum disorder, a range of symptoms marked by behavioral, social and communicative difficulties. The spectrum ranges from high-functioning, verbal individuals to more severe nonverbal ones. Daniel seems to fall within the latter group.

Cause and cure are elusive

A single cause for autism has not been found. Researchers have discovered that a combination of genetic mutations and environmental factors — such as older parents at conception — appears to be responsible.

A recent study by Kaustubh Supekar of the Stanford University School of Medicine found that the brains of children with autism have more neuron connections than those without the disorder. This would cause an imbalance of inhibition and excitation in the brain, accounting for the social and behavioral problems associated with the disorder.

But researchers don't know everything. No cure exists. So Daniel's family, like many others, deals with autism every day.

They deal with Daniel's picky eating. They give him melatonin at night to help him sleep. They hold him down for haircuts, sometimes resulting in an uneven patch or two on the back of his scalp.

During the school year, Daniel attends Alpha Hart Lewis Elementary where he receives one-on-one attention from learning specialists such as Scott Chida and learns interaction skills in structured situations. Chida keeps Daniel's family updated with daily notes about the boy's activities and behavior.

The Romero-Compain family looks for other appropriate outlets, as well. On a recent Saturday morning, Daniel, his 11-year-old brother, Andy, his 6-year-old sister, Carolina, and their mother, Ana, decide to attend a movie at the Regal Columbia Stadium 14 theater.

Carolina begs for popcorn, but they must find their seats first. Daniel doesn't want popcorn. He'll be fine with Cheetos and the Silk Soymilk his mother brought in a Tupperware cup.

In this case, Cheetos from home are allowed. This is a special showing of "Free Birds," presented by the MU Student Occupational Therapy Association specifically for children with special needs.

The movie begins promptly at 9:30 a.m. with no previews. The lights never fade completely to black. Families cuddle with blankets and pillows.

When Daniel stands up and shouts during the movie, other families don't seem to mind or even notice. They're used to it.

It's the only way the Romero-Compain family will see a movie. They also don't eat at restaurants as other families do, and they cannot take many family vacations.

Dramatic growth in cases

Events such as the sponsored movie are tailored to the increasing population of children and adults with autism. The rate, previously one in every 88 people, has risen to one in every 50 for children ages 6 to 17 in the United States, based on a recent study by Stephen J. Blumberg and his colleagues.

Boys are four to five times more likely to have an autism spectrum disorder than girls, thought to be due to genetic and hormonal differences in the brain between genders. Children ages 6 to 9 have a 1.82 percent prevalence rate,; for boys, it's 3.23 percent.

When looking for a suitable place to live after learning of Daniel's diagnosis in 2006, the Romero-Compain family noticed that Missouri popped up frequently in their searches. It was the period when the Thompson Center for Autism and Neurodevelopmental Disorders was developing at MU. The center is now a national leader in autism research, offering diagnostic services, therapies and support for families.

Daniel has been going to the Thompson Center for occupational therapy for close to two years — long enough for Brittney Stevenson, his occupational therapist, to go through a couple of different hairstyles.

Walking through a maze of hallways, Daniel obviously knows where he is going. He leads his mother and his therapist toward their destination — a room with windows lining the back wall, toy-filled cabinets and a small, kitchen area with a refrigerator and sink.

But before they get there, he stops. He enters a dark room and stands, looking around as if remembering something.

Stevenson playfully asks Daniel if he is recalling bad memories about the room. That's where they had worked to get him to try new foods, his mother said. He didn't particularly enjoy it.

Daniel heads to the occupational therapy room where he busies himself with a pink tube that can be pulled apart and pushed back together like a little accordion.

His mother opens his Angry Birds backpack and pulls out the lunchbox from school that day. The few carrot sticks she had packed are still sitting untouched at the bottom of a Ziploc bag.

He eats just rice crackers and Saltines, she says. Sometimes Cheetos. "We go through two cases of crackers a week," she says.

Definite progress made

Daniel's mother starts to read the note from school. He tried candy corn — touched the candies against his mouth as if they were teeth. This was progress.

"I think I'm going to take time off at Christmas," she tells Stevenson.  She would spend that time introducing him to different foods. She'll take away the crackers, she says, and assure her family that he won't starve.

Stevenson suggests a desensitization method — present the food and just have him look at it. Then maybe have him smell it. Kiss it.

Ten minutes into the occupational therapy appointment, Stevenson brings Daniel over to the sink and takes out two toothbrushes.

"You do it," Stevenson says. She puts her hand over his on his red toothbrush and guides his motions. She kneels down, so her face is level with his.

"Touch," she says. She wants him to touch the toothbrush to his teeth. He does, then quickly removes it.

"He was so aversive to that a couple months ago," Stevenson says. "Now he tolerates it."

Daniel and Stevenson move to the table. From a cookie sheet with small pictures stuck to it with magnets, Daniel chooses the picture of a clothespin. Stevenson takes out a Popsicle stick and six clothespins, each with one of the letters of Daniel's name on it.

Daniel takes the clothespins one at a time and clips them onto the Popsicle stick to spell his name. It takes him all of a minute to complete.

"D-A-N-I-E-L," he says.

"He's all about letters and spelling," Stevenson notes.

After completing a zipper activity that's almost "too easy" for him, Daniel chooses the writing task from the cookie sheet. He traces his name on a sheet of paper.

"Oh, dude, I know you can do better than that," Stevenson says. Daniel tries again, doing better the second time.

"E is the hardest letter," Stevenson says. The writer must change directions so many times.

But Daniel is good at it. "He likes a challenge," Stevenson explains.

After all the work with letters, which Daniel seems to love, his mother and Stevenson get an idea.

"Maybe he'd eat alphabet cereal!"

Consistent behaviors shown

Daniel's actions are common in children with autism spectrum disorders. Autism often involves hypersensitivity to texture, not liking the way certain things feel in the mouth. Ritualistic eating behaviors are typical, like the way Daniel smashes crackers.

His progress points to methods that recent research has found successful in expanding the diet of those with autism. Take slow steps. Incorporate play. Even so, picky eating has been an overlooked issue among autism's other symptoms.

A recent review of studies found children with autism are five times more likely to have challenging eating habits. Previous studies linking celiac disease and autism suggested gluten-free diets to reduce symptoms, but new research refutes this.

A research project is now underway to discover the reasons behind autism's link to picky eating and determine ways to expand, not limit, diets. This narrowly tailored project shows how far autism research has come.

Several treatments are now available, including occupational therapy such as Daniel's, that focus on independent living skills, applied behavior analysis and even medication to address symptoms such as sleep problems and seizures.

Some evidence suggests that individuals with autism will progress to the point where they are no longer considered on the spectrum. The Romero-Compain family is prepared either way.

"Daniel won't live independently," his mother says. He won't have a job, won't get married. She's grown to be OK with that.

Culturally, for the Romero-Compains, who are Cuban and Mexican, family always comes first.

"Promise me you'll take care of him," Daniel's mother has asked her family.

They get it.

A painful diagnosis

Back when Ana met her husband, Rafael Romero, on a blind date, they did not foresee this. The two eloped after three months. Sophia, now 15, was born and then Andy. The next child — Daniel — was a complete surprise.

Although she didn't realize she was pregnant until about halfway through, Ana's pregnancy and delivery were completely normal. Suspicions set in later.

Daniel met a number of milestones, including ones set by his grandmother, such as saying "mama" and "papa" at 6 months. But then language skills started to fade. Repetitive behaviors began.

"Isn't that funny?" the family told themselves.

They mentioned it to Daniel's pediatrician. They agreed to a free screening. They had professionals watch their interactions.

"I felt very small," Ana says now. "We were sitting in these teeny tiny chairs."

They sat and waited as a group of people — a firing squad, she says through tears — made this earth-shattering decision about their son.

"You are not going to fall apart," she repeated to herself.

The other children were young at the time of Daniel's diagnosis. They just grew up knowing and understanding.

Sophia, as a teenager, is embarrassed about everything her family does, her mother says. She wants to fit in. But she's unapologetic about Daniel.

Andy is devoted to his brother. They have their scuffles, often over a ruined DVD or a broken toy. But Andy is protective, explaining that his brother has autism to anyone who might wonder. He makes them comfortable.

But Carolina has been the boss. "Even her babble was bossy," Ana says.

Carolina understands what is and isn't allowed, once chasing a naked Daniel and holding his underwear until he put them on. Without having to explain, her mother says, Carolina treats him like any other kid. 

Insurance coverage improves

With four children, things can get costly — in any family. Andy needed a tutor. Sophia takes guitar lessons. Carolina does ballet.

Insurance reform enacted in Missouri under Gov. Jay Nixon in 2010 has helped cover Daniel's expenses.. State law now requires that diagnosis, rehabilitative and habilitative care, as well as pharmacy, psychological, psychiatric and therapeutic care, be covered by insurance, with an 18-year age limit only on applied behavior analysis, formerly called behavior modification treatment.

Daniel's visits to the Thompson Center are covered. His therapeutic horseback riding sessions are covered. His trained respite provider, Theresa Reinkemeyer — a godsend, his mother says — is covered. They used to pay her out of their pockets.

While it's usually smooth sailing with insurance coverage, the Romero-Compains still pay about $720 per year. Both parents work — Ana is director of university affairs at MU and Rafael works for Joe Machens Toyota Scion.

Occasionally there is a bump. Daniel has to get his teeth cleaned at the hospital instead of the regular dentist's office — he won't let anyone touch his teeth for that long. Usually, this is covered. But last year, the insurance company said there was no causal relationship between autism and the need for this approach.

The dentist battled it out with the insurance company, Ana says, with mixed results. Their out-of-pocket costs for the cleaning are still around $200.

Much remains unclear

On Monday and Wednesday afternoons, Reinkemeyer watches Daniel to give the family a break.  On this particular Wednesday, he wants to jump on the trampoline. Reinkemeyer gives him her approval.

Although her sessions with Daniel used to have more structure, they're more open-ended now. They'll go to McDonald's or a playground. It depends on Daniel's mood that day.

"But you know what?" Reinkemeyer tells him. "Clothes."

Daniel, who rarely likes to wear clothes inside, puts on a striped shirt and pulls on his pants — backward.

"Some things you just gotta let go," Reinkemeyer says.

Outside, they jump. Daniel jumps in a circle around Reinkemeyer. They sit in the middle and Daniel counts to 30, struggling only briefly when he gets to nine. He pauses sometimes to stare at the protective net around the trampoline.

Then Reinkemeyer announces she's going inside. Daniel can follow if he wants. But he chooses to lie in the center of the trampoline, his arm bent at the elbow and supporting his head, almost like he's posing.

The day before, Daniel lay looking up at the tree above the trampoline. It was a sunny day, Reinkemeyer says, creating a pretty scene as the wind rustled the yellow leaves. Daniel seemed completely captivated. .

Now, as he stares at the tree, the branches are still, the leaves are gone. The sky is cloudy, almost dull.

But Daniel keeps looking.

"I wish I knew what he was thinking," Reinkemeyer says.

It may be a while before anyone knows that.

Editor's note: The writer's brother, Tommy, had autism and died in 2011 at the age of 14.

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