by Erin Digitale
Photography by Brian Smale
Janet Cartwright starts her stopwatch. The video playing in front of her shows an 11-year-old doing homework. Like other children with autism, Katie Halpin, the girl in the video, struggles to maintain self-control, sometimes talking, yelling or thrashing around. Cartwright sits with a tidy graph-paper grid in front of her, charting Katie’s behaviors in 30-second intervals for the entire half-hour video.
It is a standard scene from psychological research, with one important difference: Cartwright is not a research professional. The Santa Cruz, Calif., lawyer is Katie’s mother.
Parent involvement is widely recognized as critical for effective autism treatment, and many intervention programs already incorporate a parent training component. Cartwright’s foray into science is the product of a new effort by clinician-scientists at Lucile Packard Children’s Hospital and the School of Medicine to broaden that involvement in light of the increased demands for services and limited resources.
Three programs, involving only about 100 families so far, offer a way out of the bind parents of autistic children find themselves in — they want to help their children but don’t know how, and medical experts have no ready answers either. One program makes therapy training sessions more accessible by teaching parents in groups. Another program, which Cartwright took part in, teaches parents how to critically evaluate autism treatments; how to, in effect, run miniature scientific studies on their own children. A third small program teaches parents socially based interventions based on a model developed by the Pacific Autism Center for Education in San Jose.
“Raising a child with autism is very stressful for families,” says Grace Gengoux, PhD, a Packard Children’s psychologist and clinical instructor in psychiatry and behavioral sciences at Stanford who teaches the therapies. It’s difficult enough to handle the core features of autism — impaired language development, poor social interaction and repetitive behaviors. But the responsibility to direct the child’s treatment can be overwhelming. It’s not uncommon for families to try a dozen or more therapies, which can range from well-studied options such as speech and behavioral therapies to treatments that have never been scientifically tested, such as vitamin supplements or chiropractic adjustment.
Giving parents well-researched therapies to tailor to their own kids, as well as a method for making decisions about which autism therapies to pursue, can simultaneously advance the child’s treatment and reduce parents’ stress.
Strong involvement from parents is more important than ever. Next year’s revisions of the “bible of psychiatry,” the Diagnostic and Statistical Manual of Mental Disorders, may tighten criteria for milder diagnoses on the autism spectrum and exclude some kids from formal autism-spectrum diagnoses. If that happens, children may not qualify for therapies now covered by their health insurance and state agencies. “Parents might be more willing to learn these interventions and implement them at home,” says Antonio Hardan, MD, a Stanford professor of psychiatry and behavioral sciences who treats autism at Packard Children’s.
One reason raising a child with autism is so stressful is that instinct can fail you. Other parents rely on gut feelings, childhood memories and advice from relatives and friends. But if your child has autism, it’s not so easy.
“The things we’re teaching parents to do are quite different from what a normal attentive parent would do,” says Gengoux.
For instance, one therapy Gengoux teaches, pivotal response training, includes exaggerated positive consequences when the child attempts to use language. To conduct the therapy, parents pick something their child cares about and then try to engage the child in conversation about it. If the child makes even the smallest effort to converse, parents respond with lots of praise and with rewards relating to what the child said.
For instance, one boy Gengoux helped treat had never talked to others, yet occasionally said a word or two to himself. “I sat down with his mother and said, ‘OK, we ought to be able to capitalize on this,’” Gengoux says. The boy adored bicycles and would sometimes say “bike,” so they took him to a spot on campus with lots of bicycles and waited until he used the word. “We gave such positive reinforcement by praising him and letting him run over and touch the bikes that he began to understand the benefits of using words and was able to start communicating,” Gengoux says. “He’s now a kid who talks a ton.”
The Packard Children’s team is studying efforts to train groups of parents to deliver PRT — an unusual format for such training, but one with potential advantages. It’s more efficient than one-on-one PRT lessons and gives parents the chance to learn from each other.
The team’s first scientific paper on the training, published in 2010, showed encouraging results. Using before-and-after videos of parents’ interactions with their kids, the scientists counted how many times children spoke and scored parents’ ability to follow PRT protocols. After parents participated in a 10-week PRT training group, their “treatment fidelity” scores more than doubled, and the children’s average number of “functional utterances” increased from 27 to 42 per 10-minute interval.
Though these results are heartening, the researchers recognize that asking parents to deliver treatment has its limits. Parent-delivered therapy is intended to supplement, not replace, autism treatment delivered by professionals, they’re quick to emphasize. And having Mom or Dad give treatment won’t work for every family.
“Just like not all of us could be physicists, not all of us could be therapists,” Hardan says. The family’s schedule, parents’ level of education and parents’ cognitive traits are all factors that Hardan speculates could influence their success.
“For instance, there is clear evidence that aspects of the cognitive traits associated with autism are inherited, which could mean that some parents will struggle to deliver therapy,” he says.
For Hardan, seeing parents’ efforts toward their children — even in the face of daunting obstacles — is a strong motivator to continue his autism research.
“These parents are so committed to their kids, to doing their best to make their children function better,” he says. “You can’t but go out of your way to help them out.”
Whether they’re up to it or not, all autism parents face the challenge of deciding which treatments their child should receive. Although a child’s physicians, teachers and therapists weigh in on this question, the decision-making power rests with parents.
“One of the biggest questions I get is, ‘What do you think about this treatment?’” says Kari Berquist, PhD, who developed Packard Children’s treatment-evaluation group for parents after studying the effectiveness of a similar program for her dissertation at Claremont Graduate University. “Often I have to say, ‘I’m not sure; I haven’t heard of that.’” But lack of scientific support often doesn’t deter parents eager — or desperate — for new ways to help their kids.
“It’s easy to get wrapped up in the fear of the diagnosis and fear of what the future holds,” Cartwright says. Research demonstrating the benefits of early, intense autism interventions has led to more autism services, but has also fed parents’ anxiety about treatment.
“Parents are pouring all this money, hope and desire into these interventions, but then they’re kind of getting stuck,” says Berquist, who completed a psychology fellowship at Stanford before joining the faculty as a clinical instructor in 2011. The trouble with an “everything and the kitchen sink” approach to selecting autism treatments is that it carries constant risks of physical, financial, mental and emotional exhaustion.
To help parents out of this rut, Berquist decided to turn them into scientists. The 12-week educational program she designed brings together groups of parents to learn the psychology of human decision-making and the rudiments of single-subject study design. Parents can use her techniques to evaluate any autism therapy their child undergoes; she’s seen families apply her methods to test the effectiveness of everything from behavioral treatments and school-based academic tutoring to equestrian therapy and vitamin B12 supplements.
The point is to help parents make rational decisions about starting and continuing autism treatments, and to learn to identify when curtailing a therapy is a step forward.
Sitting in a Palo Alto café, Cartwright pulls out a thick binder and the green pencil case that holds her stopwatch, mechanical counter and pencils: her equipment for the transition from mom to scientist. Her eyes light up as she describes a mystery that Berquist’s class helped her solve.
In spite of her autism, “Katie is a really friendly, inquisitive child,” Cartwright says. She loves animals, including her dog, Daisy, but struggles tremendously with language. “About a year ago, she told me, ‘The man in my brain knows more than I can say,’” Cartwright says. “She’s really striving to communicate.”
So Cartwright was surprised when Katie’s teachers complained she was “acting out” on the afternoons she received speech therapy at school.
“I started pinpointing the antecedent,” Cartwright says. Following Berquist’s instructions to collect all the details she could find, she learned that each speech session caused Katie to miss portions of classes on her best subjects. Depending on the day, the speech session might overlap with art, PE, folk dance, social studies or music.
A typically developing 11-year-old would have come home from school and said, “Mom, I hate not finishing my art projects. I don’t like arriving in the middle of music and not knowing the words.” Katie didn’t say any of that.
“She wants to be compliant,” Cartwright says. “Nobody told me until I investigated.”
Cartwright performed a detailed cost-benefit analysis she learned in Berquist’s class. Not only was Katie missing activities she liked, Cartwright realized, she was also missing opportunities to practice conversational speech and social behavior. Because Katie already received speech therapy from a private therapist after school, Cartwright told the school she wanted to discontinue Katie’s in-school speech therapy. “They were shocked,” she recalls. “They said, ‘Nobody’s ever turned down speech.’” Eventually the school offered a compromise, rescheduling Katie’s speech therapy at a less disruptive time of day. Katie started acting out much less.
Many parents worry, as Cartwright did, about the consequence of discontinuing treatments, even when that decision is clearly best for the child. “Just the mere fact that you adopt an intervention can make you reluctant to stop it,” Berquist says, adding that if parents take nothing else away from her class, having that one small fact about human cognition in their possession can have a big impact in the long run.
To help parents collect the best available information for making difficult treatment decisions, Berquist’s students learn single-subject study design, developing testable hypotheses and collecting and analyzing data on their children’s behavior. Cartwright decided to apply these lessons to a problem with Katie’s homework sessions. The two worked together each evening, but Katie often complained instead of concentrating, saying “I can’t do it” or “I need help” about tasks that she really could do on her own.
Berquist suggested a simple intervention: Cartwright could leave Katie alone to see if less attention from Mom would improve her focus. So Cartwright set up a series of trials. She sat Katie down with some easy worksheets, trained the video camera on her and said, “I’ll be in the other room; I’m coming back in half an hour.”
The first time, Cartwright recalls, Katie “threw a really extreme tantrum.” On subsequent days, Katie spent 10 or 12 minutes complaining loudly, tossing down her pen and putting her head in her arms and groaning. But the duration of her unfocused behavior soon lessened, as a neat line graph displaying the data in Cartwright’s binder shows. After four days Katie was settling down to work in less than three minutes each day. Cartwright was thrilled.
Then Berquist coached Cartwright to reverse the intervention — a key step in demonstrating a genuine cause and effect.
“I didn’t want to,” Cartwright says with a laugh. But she tried it, and Katie acted up once more.
Cartwright re-instituted the unwatched homework sessions, and Katie quickly regained her improved focus. “I was surprised how fast it was obvious,” Cartwright says.
Videotaping Katie has had other benefits, too. “Not only do I see Katie’s behavior, I also see my tone of voice, my interactions with her,” Cartwright says. The scientists’ approach of evaluating specific aspects of Katie’s behavior has helped Cartwright make decisions about her child more objectively. “Instead of getting emotional — ‘It’s my kid, she’s not progressing!’ — this is more scientific,” she says.
Berquist agrees, pointing out that the methods she teaches could fill two gaps in autism research.
First, conducting research on autism therapies is difficult. Gathering groups of children for randomized controlled trials takes years of work and millions of dollars. Berquist hopes eventually to digitize the data her students collect and, with their consent, publish it in a searchable form that other parents can access — not a replacement for randomized controlled trials, but still a way to broaden the scientific knowledge base for understudied autism therapies.
Second, even when treatments work for large groups of children with autism, scientific studies can’t predict how effective a therapy will be for a specific child. That means the studies lack the information parents want most. “Many parents will say, ‘I don’t care if there’s research,’” Berquist says. “For them, it comes back to their kid.”
And that’s a gap that this method is perhaps uniquely able to fill:
“Are you spending money and energy on something that will work for your particular child?” Berquist asks. “This is the best way to find out.”