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For Adam Lanza, a Debated Diagnosis That Meant “More to be Worried About”

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It has been nearly three months since the Sandy Hook Elementary School shooting, but two basic questions about Adam Lanza still remain a mystery: Who was he, and what drove him to kill 20 children and seven adults, including his mother?

During FRONTLINE’s and The Hartford Courant‘s investigation into the Newtown tragedy, one potentially important clue came in an email from a family member. According to the message, Lanza as a young boy had been diagnosed with sensory integration disorder (SID).

The condition — also known as sensory processing disorder or sensory integration dysfunction — makes it difficult to handle information interpreted by the body’s five senses. Sights and sounds can be overwhelming, as can smells and even the sensation of being touched.

“For these kids, the volume is turned way high,” explained Alice Carter, director of the clinical psychology program at the University of Massachusetts at Boston. “So what seems reasonable to most people is very overwhelming to them.”

On a day-to-day basis, the symptoms can mean any number of complications for young children. Coordination can be a challenge, as can seemingly innocuous activities such as taking a bath or getting a hair cut. Tantrums can become common, as can a low tolerance for crowds.

There is no known link between SID and violent behavior, but the intricacies of the disorder can put children who suffer from it at high risk for anxiety problems, according to Carter.

“They have more to be worried about,” said Carter. “The world is a little less predictable, because you don’t know when you’re going to go somewhere and something is just going to be too loud, too uncomfortable, too something.”

Those who knew Lanza may not have been aware of any diagnosis, but in interviews with FRONTLINE and The Courant, glimpses of his symptoms emerged. Marvin Lafontaine, a friend of Lanza’s mother Nancy, recalled a warning she once gave him about touching her son.

“She said he just can’t stand that,” Lafontaine remembered, adding that young Adam would “become upset” at being touched. “Usually it would be one of the other kids. … They’re kids, you know. They don’t care and they touch him and he was angry with them.”

Likewise, family members told The Courant‘s Alaine Griffin that during middle school, the idea of changing classes and being in crowded hallways was a worry for Lanza.

“The noise and the chaos disrupted him,” according to Griffin. “That was too much for him.”

For parents like Nancy Lanza, finding treatment for children with SID can be elusive. While the condition was first detailed in the 1970s by a California occupational therapist and psychologist named A. Jean Ayres, pediatricians, psychiatrists and psychologists continue to wrangle over a universal definition.

At issue is whether SID represents its own condition, or merely reflects symptoms of other developmental and behavioral disorders, such as autism or attention deficit hyperactivity disorder. In the case of Adam Lanza, his SID was followed by a diagnosis of Asperger’s Syndrome, according to the family member.

Last spring, the American Academy of Pediatrics (AAP) expressed doubts about SID in a series of recommendations (pdf) to its 60,000 members.

“At this time, pediatricians should not use sensory processing disorder as a diagnosis,” the AAP said.  “When these sensory symptoms are present, other developmental disorders … must be considered and thoroughly evaluated.”

The ongoing debate has kept SID from being added to the Diagnostic and Statistical Manual (DSM), the bible of psychiatric disorders. Proponents had been lobbying for inclusion in the fifth edition of the DSM, due out in May, but the American Psychiatric Association decided against it.

In a statement to FRONTLINE, Darrel Regier, vice chair of the DSM task force, said further research is necessary “to assure that it is possible to identify an independent disorder with these symptoms, that is separate from the newly identified Autism Spectrum Disorder (which includes a sensory processing criterion) and other Neurodevelopmental Disorders.”

Exclusion from the DSM carries practical implications. Occupational therapy has become a common treatment for children with sensory problems, but without recognition in the DSM, insurers are less likely to cover it. Inclusion would also open the door to more research dollars.

Perhaps most important, according to Carter, is the clarity that a DSM listing would provide. Not only would that make diagnosing the condition easier, she said, but also recommending the right treatment.

“Right now we can’t do that because there is not a standard definition we all use.”

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