Keagan Peterson’s first birthday party was a happy occasion — cake, balloons and gifts — but his mom, Port Orchard native Stephenie, couldn’t shake the feeling that something was wrong. Keagan, now 6, seemed to be suffering from a major sensory overload.
“He didn’t want to touch the frosting on his birthday cake. He was greatly upset by the feeling of the grass on his feet. And I noticed that he wouldn’t sustain eye contact,” she recalls.
By age 2, he’d been diagnosed with sensory processing disorder (SPD). But the diagnosis didn’t explain all of Keagan’s quirks: his habit of repeating words and phrases, his obsession with patterns or his penchant for gigantic, violent meltdowns.
He was officially diagnosed with autism at 3, about the time his family moved from the Puget Sound region to Dallas, Texas, where they now live. But his symptoms, such as his inability to read social cues, avoidance of eye contact, high intelligence and advanced vocabulary, were more consistent with Asperger’s syndrome, one of numerous developmental disorders on the autism spectrum. Earlier this year, his 4-year-old sister, Eden, received the same diagnosis: high-functioning autism, or Asperger’s syndrome.
Two kids with three labels between them — SPD, autism and Asperger’s — made life complex, and insurance paperwork was a nightmare. It’s a familiar scenario for families with a child (or two) on the spectrum: Because many spectrum disorders have overlapping symptoms, arriving at an accurate diagnosis and getting needed treatments can be a murky medical maze.
A New Label
But that murkiness may be getting a little clearer. At least, that’s the hope of the American Psychiatric Association, which earlier this year removed the diagnosis of Asperger’s syndrome from the Diagnostic and Statistical Manual of Mental Disorders.
Under the new definition, Asperger’s is recognized as a form of high-functioning autism and is grouped under the autism umbrella, along with other familiar spectrum disorders, such as pervasive developmental disorder and childhood disintegrative disorder. The change could make it easier for those on the spectrum to get needed treatments, since certain states provide services for autism but not for related spectrum disorders like Asperger’s.
The manual is the diagnostic bible used by mental health professionals. Its language drives treatment resources and the way insurance companies determine coverage, and helps schools determine how to allocate special education funding. Changes to its verbiage are a big deal and not without controversy. This change sparked angry protest and impassioned petitions from the Global and Regional Asperger Syndrome Partnership and the Asperger’s Association of New England.
Though she’s not bothered by the change, Stephenie Peterson understands the dissent. “A lot of adults with Asperger’s have their identity tied up with the title. I can understand how it would be hard to lose it,” she says.
A Separate Disorder?
New research is stirring up more controversy by making the case that Asperger’s is, in fact, a distinct disorder. According to a study published in BMC Medicine, children with Asperger’s have different electroencephalography (EEG) patterns (or brain waves) than children with autism. This shows that Asperger’s is not merely a mild form of autism, but an entirely separate condition with unique neurological implications.
Many health professionals acknowledge that Asperger’s syndrome has unique characteristics that differentiate it from autism: Individuals with Asperger’s don’t have the language deficit often seen in those with autism, are not intellectually impaired and can have tremendous focus. These uniquely “Aspie” (a friendly nickname for those with Asperger’s) characteristics will continue to shape treatments and therapies for those with Asperger’s, even under its new “autism” label.
But regardless of how the disorder is labeled, early intervention is key to successful treatment. “While the brain remains plastic throughout life and new things can always be learned, the greatest plasticity is during the younger years,” says Stephen Shore, Ed.D., author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. So interventions such as occupational therapy, speech therapy and specialized social skills groups may have the greatest impact—and the best chance of positively shaping a child’s future—if they’re initiated during early childhood.
Sneaky symptoms
Asperger’s syndrome can be tricky to spot, particularly in toddlerhood, because the disorder doesn’t cause speech delays, and social dysfunction can go undetected until the school years. But symptoms often appear before age 3, and parents can pick up on the signs if they know what to watch for, says Dr. Gary A. Stobbe, program director for Adult Autism Transition Services at Seattle Children’s Autism Center.
Many times, children with Asperger’s begin speaking early, like Keagan Peterson, who knew hundreds of words before his first birthday. “Rather than starting with ‘mama’ and ‘dada,’ for example, a child with Asperger’s might being with full sentences or phrases,” says Shore.
Children with Asperger’s can have large vocabularies, but may speak in a monotone or with an odd inflection. And they may be unable to match their vocal tones to their surroundings; they might not use a quiet voice at the library or at the movies, for example.
They may also display intense focus on a narrow set of interests. Though not intellectually behind their peers, they have difficulty understanding social contexts and the feelings of others. They may lack physical coordination; movements may seem either stiff and stilted or overly bouncy, according to the National Institute of Neurological Disorders and Stroke.
A common difficulty seen in Asperger’s and high-functioning autism is “executive functioning,” or the ability to plan and organize, says Stobbe. Simple tasks such as choosing an outfit to wear and then getting dressed, or carrying out a nightly routine of brushing and flossing can present major hurdles.
Bigger challenges come during the school years, when children are expected to work on projects over several days and turn in homework, says Stobbe. In school, parents can expect special accommodations that can range from social skills support and specialized sensory environments to more traditional help with specific academic abilities, such as writing or reading comprehension.
Diagnosis drama
Ultimately, the precise name of the disorder may not matter much; a parent’s job remains the same, notes Stobbe. “Don’t let the diagnosis dominate your planning and parenting. Your goal as a parent is to provide an environment to help your child be happy and succeed.” Regardless of the diagnosis, learning the specific strengths and weaknesses of your unique child is key, he adds.
Life in a home full of Aspies has not been easy, says Stephenie Peterson. But it’s wonderful. “My kids are so smart, so funny, so amazing. And it isn’t like they are great kids in spite of Asperger’s. A lot of the amazing things about them are in part because of their Asperger’s.”
Malia Jacobson is a Tacoma-based freelance writer.
Symptoms of High-Functioning Autism (formerly known as Asperger’s syndrome)
• Monotone pitch
• Extensive vocabulary
• Restricted interests
• Lack of empathy
• Avoidance of eye contact
• Repetitive motions
Source: Stephen Shore, Ed.D., author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome
