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Blessings to count: Autism can wear thin even families with deep pockets

Posted Feb 22 2010 6:43pm
By SAM MCMANIS
McClatchy Newspapers
Published: Tuesday, Feb. 16, 2010 - 5:10 am

http://www.sacbee.com/2010/02/16/2539889/blessings-to-count-autism-can.html

Sacramento, Calif. - They are both Harvard-educated and in their late 30s - he a cardiologist, she a pediatrician. They have three children, a boy and two girls, with a fourth on the way. They have a spacious home in Sacramento's Pocket neighborhood.

Such a charmed life. Such blessings to count. Such a model family.

What you wouldn't know until you cross the threshold at Howard and Tracey Dinh's home is the stress that colors their existence like dreary wallpaper, the challenge of making it through each day with at least one nerve left unfrayed, the anxiety that takes hold whenever they try to exhale.

The Dinhs are the parents of an autistic child, Austin, 7. They love him dearly, care for him constantly and see cognitive improvement almost daily.

But they know Austin won't live a life like Allie, 4, and Anna, 2. Which means their family life - not to mention their careers - never will be quite what they pictured as a couple starting out. Which is fine. They came to terms with that long ago.

That doesn't mean there isn't stress. There's plenty of it. "It's one of those things that's all-consuming," Tracey says.

What you also wouldn't know until you meet with the Dinhs is how lucky they consider themselves, how thankful they are that their professional backgrounds provide a buffer against money worries.

"I can't imagine what it's like for families where they don't have the financial means, or even a single parent," Tracey says. "In a lot of ways, we are fortunate."

Yet the Dinhs are not immune to caregiving burdens. Some things transcend class distinctions.

Researchers at the University of Washington Autism Center found that parents of autistic children show higher stress than those whose children had other developmental-delay issues.

There are hundreds of thousands of such parents: The Centers for Disease Control and Prevention says autism spectrum disorder affects 1 of every 110 U.S. children.

It's not so much the daily living skills --- feeding, dressing --- that trigger stress, says Dr. Annette Estes, the lead researcher. It's dealing with the erratic, sometimes violent "problem" behavior.

"Many of the parents I meet may be experiencing internal stress, but they respond incredibly adaptively," Estes says. "They're out there learning neurology and genetics and treatment that's specialized. They are using that stress to provide their kids the most optimal chance.

"They are really a high-functioning group of families. But there are people who just get slammed by this."

SOURCE OF CHRONIC STRESS

A University of Wisconsin study, published last year in the Journal of Autism and Developmental Disorders, reported that mothers of autistic children showed abnormally low levels of cortisol, a hormone released as a protective response to stress. Researcher Marsha Mailick Seltzer has compared chronic stress profiles of these mothers with those of combat soldiers.

For parents such as the Dinhs, caring for Austin takes equal parts patience and perseverance, with a healthy sprinkling of humor.

One might think that with their medical training, they would be better suited to deal with an autistic child than other parents.

"No, autism just kind of overwhelmed us," Tracey says. "When we were in training, we were only taught the severe form of it. You rarely saw a child with autism."

So when Austin's development seemed unusually slow as an infant and toddler, the Dinhs said they initially were in denial. They were living in Los Angeles while Howard was doing research at UCLA Medical Center. He says he felt nearly overcome with worry, not sure how to respond. It took a toll on their marriage.

"I'm a worry wart," Howard says. "My sister would say, 'Hey, how come we call to (Austin) and he's not looking at me?' I got angry. I said, 'You think there's something wrong with my own child?' I remember telling (Tracey), 'Would you ask the pediatrician if he has autism?' She got real angry at me, saying, 'Hey, I am a pediatrician! Why don't you ask me?'"

After meeting with several experts, a diagnosis came back. In a way, it was a relief to know, since the couple was feeling increasingly anxious and helpless.

"Tracey was literally a prisoner in our little apartment by UCLA, because if she walked out and (Austin) didn't see the leaf that was there yesterday, he couldn't move," Howard says. "She was carrying him screaming. The apartment people knew us as the family with the screaming child."

They decided they needed to change cities and career goals. By this time, Allie had been born, and they decided that Howard had to relinquish his fulfilling, but less financially rewarding, faculty and research position to join a heart practice. Tracey would sacrifice a full-time pediatric practice to devote most of her time to caring for Austin.

NEW CITY, NEW LIFESTYLE

Living in Los Angeles was not feasible because of the cost. They chose Sacramento. Howard often works double shifts and weekends at Regional Cardiology Associates. Tracey works less than half time at Kaiser Permanente in south Sacramento, now that Austin is old enough to be in school.

"There are tiny moments I get a little resentful," Tracey admits. "I feel like my career was put on the second burner. But I realized I needed to focus on (Austin)."

The couple have adjusted to the routine. Still, there are tense moments.

"(Howard) feels out of the loop," Tracey says. "He goes to work and has the burden of providing for the family. Because I deal with Austin's therapies and get really stressed sometimes, when (Howard) comes home and asks, 'What have you guys been working on. What progress has been made?' the first thing I want to think about is, 'I don't even want to think about it.'"

But the stress, in some respects, has strengthened their bond, Howard says. He recalls times, when Austin was younger, when they alternated staying up all night with their son, trying to get him to fall asleep.

"We'd take turns feeling insecure," Howard says. "I remember thinking, 'What's going to happen to him? Is he ever going to go to college?'"

They worried, too, about their relationship.

"We were acutely aware of the statistics on families with a child with autism," she says. "They're more likely to divorce. Just knowing that, even with moments when I get angry - and every family goes through that - what really keeps us together is just the thought of him. One person caring for him would be impossible.

"I guess it's really true that kids can be the glue to hold families together when, on the spur of the moment, you're thinking, 'OK, wouldn't it be nice to just take off?'"

EMOTIONAL DRAIN

It's the daily challenges of tantrums that can weigh on a parent. "You get so overwhelmed and so emotionally distraught that I tell myself I need to step back, that some things are just beyond my control and I need a break, even if it is just a second or two, just to reorient myself and then come back," Tracey says.

Then there's the guilt she feels for not spending enough time with Allie and Anna.

"They really do feel second," she says. "It's not that you love them less; it's just that there are certain priorities you have to make for (Austin) to progress at that critical early stage."

Just when it seemed as if the family dynamic was settling a bit - Austin is now talking and in school; the girls are thriving in preschool; the family can even take mini-vacations to the snow at Lake Tahoe - another dimension has been added.

The couple's fourth child is due in July. The Dinhs had planned to stop at three but, well, these things happen. Tracey and Howard say they're excited, but they also admit to feeling anxious.

"If the fourth child is a boy, we know the chances are higher" for autism, Howard says.

Life, Tracey says, was so chaotic when Austin was younger that "I didn't have time to realize I was pregnant and worry about it."

"Now," she adds, "I have to put myself in a more positive mind-set. Otherwise, those thoughts and questions will come at you nonstop."
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