Anything but medication. That was Sylvia Sumida's goal for her 6-year-old son, who suffers from ADHD, attention deficit-hyperactivity disorder, a condition of impulsive behavior and lack of concentration that is commonly treated with daily doses of stimulants.
But Sumida’s wish came with some heavy costs. With help from family members, the Laguna Niguel mother spent nearly $20,000 on therapies such as hyperbaric oxygen treatments, homeopathy and biomedical intervention. None of them worked.
“We just about bankrupted ourselves,” Sumida said.
In Irvine, another mother, who asked not to be identified, offered a similar story. Her 9-year-old daughter with ADHD symptoms is receiving treatment from a cognitive center for six months of intensive tutoring and counseling sessions. She estimates they will ultimately cost $25,000.
“It’s ridiculously expensive, and insurance won’t cover it, but it’s worth trying,” said the mother, who, like Sumida, is trying to avoid the possible ill effects of medicating her child but feeling the strain of impulsive and sometimes aggressive behavior and problems in school.
If it doesn't work, “we’re in trouble,” she said. As for her finances: “I have an inheritance. … I should say ‘had.’ ”
Recent decades have witnessed an explosion in ADHD diagnoses. The disorder affects as many as 10 percent of American children, according to some estimates. But unlike other childhood ailments like asthma and obesity, which are more prevalent in poor communities, the statistics suggest that in Orange County, ADHD disproportionately afflicts children from affluent areas like Laguna Niguel and Irvine.
Yet experts say the number of ADHD diagnoses does not necessarily give an accurate picture of who is suffering from the condition. A combination of overdiagnosis and underdiagnosis could be occurring.
“Looking at diagnosis alone, ADHD is more prevalent among people with resources,” said Dr. Marc Lerner, the medical officer of the Orange County Department of Education, a pediatrician and an ADHD researcher. “But who actually has it and who doesn’t, we’re not sure about.”
What seems certain to most experts, however, is that higher rates of diagnosis are linked to greater healthcare access that comes with prosperity. Also contributing are the intense academic expectations held by parents and teachers in affluent communities, in some cases driven by concern about college admissions.
The Orange County school district with the most ADHD students is one of the county's wealthiest, Irvine Unified, according to the latest data provided by districts to the county’s Department of Education. Irvine outnumbers Capistrano Unified and has twice the ADHD student population of Santa Ana Unified, even though both districts are about twice as large as Irvine's.
Along these lines, the rate of ADHD diagnosis for white children in Orange County is 5.5 percent, at least twice as high as the rates for the county's Latino and Asian populations, according to the state- and federally-funded California Health Interview Survey, which is based at UCLA.
Resources definitely play a role in these numbers. Wealthier families are not only more likely to have access to a primary care doctor but also to neurologists and psychiatrists. Further, experts say, some doctors can be too quick to accommodate parents and make a cursory assessment.
In some cases, Lerner said, children diagnosed with full ADHD are actually suffering from milder forms of the condition.
He said that diagnosing ADHD requires more than just finding evidence of hyperactivity and inattention. It also requires finding that the condition causes impairment. In academically high-performing Irvine, the question of impairment matters.
“The higher your expectations, the more concern there is about meeting expectations,” Lerner said. “Parents with high expectations may be looking for or sensitive to impairment, and impairment is a necessary feature of diagnosis.”
Brett Patterson, a psychologist in Orange County who advises teachers, treats patients with ADHD and leads parent training classes, can attest to the effects of a demanding atmosphere that he said defines “the culture of Irvine education.”
Patterson has seen high-achieving parents whose first child can focus on homework for an hour or two and earn A's. But when a younger child focuses for only a few minutes at a time and gets B's, parents may begin to suspect disorders, he said.
Another aspect of a high-performing academic culture is pressure on teachers, Patterson said, which can sometimes translate into a desire to medicate a student whose behavior is disruptive in a classroom but not necessarily full ADHD.
An additional reason for Irvine’s ADHD count could be parents of older students seeking ADHD status to qualify for special testing accommodations in order to boost performance on standardized tests, said Roxane Olsh, a school psychologist in the Irvine Unified School District.
“There is abuse. It’s more at the high school level,” Olsh said. “I’ve had parents come to us with A's and B's, and they want accommodations … when students take the SATs. I wish it wasn’t true.”
For Costa Mesa mother Andrea Krumins, it’s hard to imagine falsely claiming ADHD. Her son, Andre, 14, has struggled mightily to overcome learning challenges, which first came into focus after multiple kindergarten expulsions.
Facing pressure from school administrators to medicate Andre, Krumins hired an attorney to challenge the district and eventually placed her son in a school for children with ADHD and other learning disorders.
The school, UC Irvine’s Child Development Center (CDC) provided a much-needed respite for Andre and helped his parents learn strategies for coping with problem behaviors without using medications. But the CDC charges $18,600 a year in clinical fees for year-round schooling, which is defrayed only in some cases by health insurance or public funding.
Despite the high cost, Krumins said it’s a mistake to assume that the key to ADHD treatment is money. In fact, her legal fees and four years of CDC clinical fees were covered by her school district after she prevailed after mediation.
“You don’t have to have money. You do have to do the research,” she said.
But researching law and medicine to take on a school district might not be realistic options for less-educated or non-English-speaking parents. In Orange County, one source of assistance available to disadvantaged families is Cuidar, where Patterson and other experts conduct classes for parents of young children, many of whom show the extreme behavioral problems that typically lead to ADHD diagnosis and medication.
Cuidar, which means “to care for” in Spanish, offers classes in two languages, teaching preventive techniques to head off unruly behavior, such as time-outs, star charts and clear communication. Cuidar also trains preschool and early elementary school teachers.
Half of families enrolled in Cuidar services have household incomes of less than $29,000. About a third of Cuidar families, however, earn between $49,000 and $106,000 or more, suggesting that Cuidar could charge at least some families more than the current $20 fee to enroll.
That’s the aim of the Children & Families Commission of Orange County, which is considering reduction of Cuidar's annual allocation from $550,000 to $250,000. The commission, responding to fiscal pressures, hopes Cuidar will institute more fees for its services, according to the commission's executive director, Mike Ruane.
While Patterson understands the demands of the fiscal climate and shares the goal of making Cuidar more self-sustaining, he worries about how quickly this change can occur.
“We want to make sure that what we’ve built in 10 years has legs to move forward independently,” Patterson said. What's at stake, he said, is "access to all families in the community. That’s where the risk is.”
Amy DePaul is a Voice of OC contributing writer and lecturer in the UC Irvine literary journalism program. You can reach her directly at firstname.lastname@example.org