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.