An anecdote from a friend led Catherine Saint Louis, a health reporter, to a story that ran last week about the difficulty children on the autism spectrum have receiving proper dental care. She explains the reporting process.
Sometimes reporters hear about important stories by chance. In this case, a friend who is the mother of a 9-year-old son with autism had recently moved to New Jersey and had finally found a dentist willing to work with him after years of struggle.
She said their first dentist had given up on her son. Cleanings were possible only if he sat on her lap in the chair and she wrapped her arms and legs around him to keep him still. “It is awful,” she said.
Another dentist suggested general anesthesia to facilitate a simple cleaning, which I later found is not uncommon, but ill-advised for routine preventive care because of anesthesia’s risks.
The situation changed only when she happened to find a dentist who specialized in using behavior modification techniques. Her son had been “terrified,” she said, but with accommodations, he could finally tolerate cleanings and sit on his own. (X-rays are still but a dream, alas.)
Her odyssey surprised me and jump-started my own. Some stories hinge on convenient statistics demonstrating a change and thus can be swiftly assembled. Instead, this piece was built brick-by-brick this past summer.
One parent’s story is just one story, so the tip might have ended there. But it turned out that her plight to find a dentist was not uncommon among parents of children with autism, nor was her distress. In interviews, parents told me again and again that dentist visits were terribly stressful for a host of reasons: Children with sensory issues can get overwhelmed by gritty paste, odd noises or simply the new environment. Some kids can’t talk about their fear, so they squirmed, kicked or clamped their mouths shut. Some dental offices didn’t let parents accompany their nonverbal children for cleanings, even to act as translators. Meltdowns ensued.
It felt as if I had my first brick in the wall.
I called around to dentists nationwide to ask what barriers historically have existed for children on the spectrum and what, if anything, had changed of late.
One issue was that dentists — especially general practitioners who haven’t done a pediatric residency — might not have been taught to provide care for people with autism spectrum disorders. Only relatively recently, in 2006, did the Commission on Dental Accreditation implement a standard requiring graduating dental students to be competent in assessing the treatment for patients with special needs.
A little digging unearthed a wealth of continuing education courses that dentists and hygienists were taking to better accommodate children on the spectrum. In the last year, more than 14,000 dental professionals completed one online offering.
Some sources played down continuing education’s ability to spur dentists who had been on the sidelines to start treating children with autism spectrum disorders. But not Dr. Richard Valachovic, the executive director of the American Dental Education Association. In addition to dental schooling, continuing education “increases the level of patients that dentists are comfortable treating and not having to refer out to somebody else,” he said.
As I deepened my reporting, an unforeseen thread emerged: Some parents took their child with autism for a first cleaning only at age 8 or later, and others only went once there was an emergency. The children never got preventive care, though dentists recommend a visit by the eruption of the first tooth or by the first birthday.
It was odd because the importance of early intervention is drilled into the heads of parents in the autism community when it comes to talking, walking or social interactions. But somehow oral health was not part of that broader message.
“Parents basically avoid dental visits for fear of their child’s behavior,” said Dr. Cavan Brunsden, a pediatric dentist in Old Bridge, N.J. Yet, he said, if patients on the spectrum could come to see him before age 5, dental cleanings could become nonthreatening with repetition.
Getting that public-health message to parents seemed important to me and my editor, Mike Mason, who, by then, was pushing to get the story into the Science section.
I was thrilled that the video department decided to send a photographer and video journalist named Katie Hayes Luke with me to visit Dr. Amy Luedemann-Lazar, a pediatric dentist in Katy, Tex. She captured what my words couldn’t: how tricky even sitting in the dental chair can be for a child with autism. Equally important, the video captured the emotion in the voices of grateful parents.
This month, the final brick in the wall came when I met Nicole Brown and her 13-year-old daughter, Camryn Cunningham, at Dr. Luedemann-Lazar’s office. Ms. Brown’s odyssey to find dental care had been a long one, and even included a frustrated dentist screaming at her daughter.
Yet, Ms. Brown’s story, too, had a hopeful ending, because step by step, a hygienist and an assistant taught Camryn what was expected of her, starting with how to sit in the dental chair.
We watched as Camryn sat — hands on her stomach, legs out straight — through a full cleaning, only her second ever. “I was thinking this is unbelievable. I didn’t know it would be that good of an appointment,” Ms. Brown said, adding, “It’s embarrassing to say that at one point I was afraid to take her to the dentist because I didn’t know where to start.”
Since the story ran last week, I’ve heard from dentists who champion improving access to routine care for children with autism who hoped my article would spur more dentists to educate themselves to be able to treat children on the spectrum. The story has been shared more than 10,000 times on Facebook. Parents desperate to find a dentist willing to treat their child emailed. And on the New York Times Facebook page, some parents asked for pointers on how to find a dentist, so I joined the conversation and tried to help. One mother in Miami wrote about struggling to find a dentist who is “autistic friendly” and mentioned that she had been told her child needs to be treated under general anesthesia, to the tune of $2,800.
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