Behind the Autism Statistics

This week, the journal Pediatrics released new statistics compiled by the CDC on the prevalence of autism, boosting the rate from 1 in 150 to 1 in 100. It’s another staggering leap in an apparent epidemic—more than doubling the rate of children diagnosed with autism since 1996.  Indeed, over the past dozen years, autism has made sad, steady progress from obscure syndrome to seemingly ubiquitous developmental disorder.

In every state, our scary autism epidemic fuels walkathons, awareness events, and a proliferation of local chapters of national autism organizations. And across the country, concerned parents whose children aren’t keeping up or seem troublingly different, turn to medical professionals and early childhood educators for evaluation and help. The problems are real.

But what if the autism statistics are wrong?

In 1987, the Diagnostic and Statistic Manual of Mental Disorders (DSM) began broadening the definition of autism to include not only children for whom socialization is impossible, but also those with varying levels of ability to interact and function. What was once a devastating affliction known simply as “autism” evolved into a “spectrum” of disorders, encompassing everything from profound impairment to far milder challenges. Naturally, this more expansive definition of autism partly explains the exponential increase in diagnoses in recent years.

But many children whose symptoms significantly differ from classic autism—who belong only on the milder end of the autism spectrum, if they belong anywhere on the spectrum at all—are inaccurately ending up with serious autism diagnoses.

How does this happen? When doctors drop the a-bomb on a family, it helps to have an action-plan, answers, and ready resources at hand to reassure the frantic parents. Many states offer autism intervention services, but most don’t offer subsidized therapies for children who are falling off of the developmental ladder due to milder disorders—sometimes sensory, sometimes in motor planning or other areas. 

So parents whose kids’ challenges are less severe are often urged to accept a full-fledged autism diagnosis, as otherwise they would lose access to state-funded treatment, and might, down the line, end up ineligible for support services in public school.   The result is that the autism statistics grow and grow.

That’s Graham Linthorst’s story. At just seventeen months old, Graham became an autism statistic even though he didn’t have autism. It’s a tale that’s chillingly familiar to thousands of families traveling in the autism world with a misdiagnosis, and no map to the exit door.

Graham’s parents started to worry just before his 1½-year checkup.  He seemed to be losing language, acting spacey, and resisting play. He was assessed by the state of California and given a provisional diagnosis of autism. They were told he was in need of therapy, and handed a prescription for Applied Behavioral Analysis (ABA)—considered the gold standard therapy for children with autism.

Sounds good: state-funded screening and help. Except for one problem: Graham doesn’t have autism. He’s “autistic-like.” No matter, Erik and his wife Jennie were told, just go with the autism label—he needs help NOW.

But shortly after choosing a clinic and beginning therapy, Erik and Jennie Linthorst realized that while Graham was making some progress, the therapy didn’t seem to be addressing his biggest problems, which involved motor challenges and sensory issues, rather than the kinds of social impairments typical of autism.

Applied Behavioral Analysis focuses on repetitive commands and reinforcements to prompt typical developmental and social behavior. But Graham had only a few of the  idiosyncratic behaviors – like repetitively spinning wheels and walking on lines on the floor – that are characteristic of many children with classic autism. Most telling, he instinctively made eye contact, and was very interested in connecting socially, unlike most children with autism.

The Linthorsts decided to pay out of pocket and took him to a developmental pediatrician who made a sensory profile of Graham. She determined that Graham in fact has a milder syndrome that's not on the autism spectrum, called Sensory Processing Disorder—a diagnosis that doesn’t come with services. Keep the autism label anyway, she advised. Otherwise there would be no more state support for treatment. She also recommended trying another kind of therapy, one the Linthorsts would have to pay for themselves.

About six months down this twisted, poorly illuminated path, Erik started to make a documentary about their experience. The medical and educational establishments’ failure to provide straightforward diagnostic or therapeutic help for his child just didn’t seem right. It shouldn’t be happening to them, and it shouldn’t happen to anyone else. He started filming at Graham’s doctor’s appointments and therapy sessions.

He went looking for help with his film project, and ended up joining forces with me. Despite having covered education issues my entire career, I hadn't really thought much about the explosion of autism cases, but it did seem that something about this sudden epidemic didn’t add up. (Back in 2001, I’d done a couple of stories about how a new magnet high school in Chicago was working to be accessible to students with autism. [Click to hear]) Before agreeing to work on the film project, I asked Erik for the names of some of the experts he’d talked to, or taken Graham to see.

I started by calling the best-known and most widely respected—Stanley Greenspan, the author of thirty-eight books on human development. He’s a clinical professor of Psychiatry, Behavioral Science and Pediatrics at George Washington University Medical School, chairman of the Interdisciplinary Council on Developmental and Learning, the founding president of the Zero To Three Foundation, and former director of the National Institute of Mental Health’s Clinical Infant Developmental Program and Mental Health Study Center.

Greenspan told me on the phone, (and later on camera), “Basically we have to misdiagnose these kids to get them help.”  It’s the wrong help sometimes, but it’s the only way to get state funding.

Greenspan himself has devised an intensive one-on-one program of therapy called Floortime, which helps kids with a wide range of issues – not just autism. But while this therapy has helped thousands of children working with therapists all over the world,  Floortime isn’t covered by the state. Why? The therapy is so carefully tailored to meet the deficits of each individual child that it’s not considered to be backed by adequate clinical evidence. Individuals and their neurological differences don’t make for neat quantitative studies.

The Linthorsts paid out of pocket for Floortime, and they quickly saw Graham making progress far beyond what he was achieving with the state-funded ABA treatment. So Erik decided to see if he could get the state to pay for the Floortime sessions.  He invited the state agency to come over and look at his son’s therapy. They came, they looked, and decided to fund Graham’s Floortime sessions … if, for bureaucratic reasons,  Erik would agree to let them only vaguely allude to the therapy in the official paperwork as  “behavioral intervention” (also the generic term for ABA), instead of identifying it by name.   Progress?

Obscure documentaries are made every day, but AUTISTIC-LIKE: Graham’s Story has generated such overwhelming feedback that it seems clear this issue is far from obscure. The e-mails from parents around the world saying, “This is our story, too!” started coming the day we posted our film trailer on YouTube. And they keep coming every week.

Eight film festivals and one citation for outstanding medical reporting later, it seems that Erik has a point with which many agree: our system for addressing the needs of autistic-like kids is seriously flawed. During the last year, he has been an invited presenter at some of the leading child advocacy conferences on the planet.

This weekend, thousands of parents and professionals trying to help kids with “autistic-like” issues will gather to watch the film and advance the conversation in  90 cities around the world, from India to Australia, and from Delaware to Dar es Salaam. The events are organized by the filmmakers, together with the Sensory Processing Disorder Foundation, where many of these families eventually turn for help. (A central goal of the SPD Foundation is to ensure that the disorder, now estimated to affect as many as 1 in 20 children, is included in the DSM-V, which would turn it into an official diagnosis that would come with much-needed help.) In the New York/New Jersey region alone, there will be nine screenings this weekend; another five in Washington, D.C.

It’s starting to look like a movement: one that should help us make progress toward understanding what autism is—and what it is not.  Every day, precious time and money is wasted as kids who don’t belong in the autism world get pushed into it.  Finally, parents are pushing back.

See the movie this weekend: www.autisticlike.com

Jody Becker is a journalist based in Southern California. Her stories have been featured on NPR and Marketplace and in the Los Angeles Times, The Seattle Times, The Boston Globe, and The New York Times.com.