Does My Child Need a Label?

Some families find solace in having an expert give their child’s disability a name, while others find it stigmatizing and pointless.
 
The explosion of new diagnoses has only fueled the debate. Consider: the Centers for Disease Control and Prevention (CDC) estimates that one in 88 American children falls somewhere on the autism spectrum, a 78 percent increase compared to only a decade ago. Similarly, the federal agency reports that a total of 5.4 million children ages 4 to 17 have been diagnosed with ADHD as of 2007.
 
A professional diagnosis can bring obvious benefits to parents seeking resources and support – from speech and language therapy to extended time for test-taking.
 
 “Often, kids are struggling and they don’t know why,” says Leyla Bologlu, a Bay Area pediatric neuropsychologist who diagnoses children with a variety of disabilities, including autism and ADHD. “[A diagnosis] gives something for families to talk about. Suddenly, there’s meaning.”
 
But an accurate diagnosis isn’t always easy, especially when it comes to something like ADHD, often a catchall for a variety of behaviors. There can be many reasons for inattentiveness, notes Bologlu.
 
Before giving such a diagnosis, she examines the family history, observes the child in various settings, and does both a neurocognitive assessment (of memory and academic achievement) and psychological assessment, in order to rule out things like moodiness and stress.
 
Breaking the Isolation
 
Before Christa Dahlstrom’s son was diagnosed with Asperger’s syndrome, she felt alone and isolated. The other parents she met in her Oakland neighborhood talked about things like ski trips and art classes, subjects she could hardly relate to.
 
Ben had taught himself to read when he was only 2 ½, but he couldn’t tell her what he wanted for breakfast. When he was 3, the school district did an assessment, which led to a diagnosis and an early intervention preschool.
 
“For me, the diagnosis started out as a path to the services and support he was going to need in school,” says Dahlstrom. “But it’s benefitted us as a family because we went from not knowing anyone dealing with our challenges, to being connected to this incredible community.”
 
Now 9, Ben is starting to ask questions about his condition, like why he gets so anxious and worried all of the time. Dahlstrom thinks this may be a good time to explain that his condition has a name.
 
“We want to talk to him about Asperger’s, but in a positive way,” she says. “We don’t want him to feel broken, just part of a group of people who have a different mind.”
Parents who seek a label for their kids should have a purpose in mind, according to Joanna Jaeger, a board member and volunteer coordinator at Parents Helping Parents, a San Jose-based organization that provides support and resources for families of children with special needs.
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 “Anyone seeking a diagnosis shouldn’t be just seeking a diagnosis, they should be thinking about what they are going to do with it,” Jaeger says. “We have to be cautious to look at the individual first and not the diagnosis. It’s just a part of who that person is.”
 
He’s a Lefty
 
Joanne Gouaux of El Cerrito believed that teachers weren’t looking at all of the facts when it came to her son. Carter had always been a happy, curious boy who met all his milestones.
 
Then, in kindergarten, he struggled with writing. Teacher reports noted that he became easily discouraged. A reading specialist recommended a psychological assessment, as well as a binocular vision assessment for perceptual skills and eye-tracking.
 
Gouaux spent months looking for answers, but every expert consulted assured her that Carter was developing just fine. She transferred him to several different schools until finding an independent school in Berkeley where – finding five other “lefties” like himself – he began to blossom.
 
Today, his mother believes the other schools simply didn’t know how to teach the mechanics of writing to left-handed kids.
 
“If a label is appropriate for a child, then great,” Gouax says. “My sense is they get overused. … [Schools] want to find someone else to teach a child that doesn’t fit the norm.”
 
Special Education
 
In many cases, parents seek a label to qualify for special education services. It’s a long and tedious process, says Anjanette Pelletier, senior administrator for the San Mateo County SELPA (Special Education Local Plan Area), a consortium responsible for making sure every eligible child receives special education services.
 
Even after a doctor diagnosis of autism, a child may not necessarily receive special education services in public schools, she says. This failure can be due to federal mandates, which list a set of criteria that students must meet for services, such as speech and language therapy.
 
“Sometimes, that’s confusing for parents,” Pelletier acknowledges. “It’s hard to have your doctor say one thing and your school say another.”
 
She advises parents to consult a school representative or family doctor to see whether a diagnosis is really needed. “Not all support for children needs to be part of a special plan. There are a lot of things schools can do that don’t require special education.”
 
Auey Santos of Oakland believes that a diagnosis was a godsend for her son, Axel, who at 2 wasn’t talking or developing communication skills. He started speech therapy and around age 4, he was able to say simple words like mama. By the time he reached second grade, he was talking at kindergarten level. In third grade, he was diagnosed with dyslexia, which led to his attending a special clinic that helped him jump three grade levels in his reading skills. He went to a social skills class and had an aide in the classroom.
 
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Today, Santos says that one would never guess by looking at her son, now 10, that he was diagnosed with Pervasive Developmental Disorder.
 
A Label is All They See
 
Santos’ approach was very different from that of Liza Szabo of San Jose, who decided to forego an official diagnosis on learning that her son likely has borderline Asperger’s syndrome.
 
Szabo’s decision was partly influenced by the consulting neurologist, who, she says, told her that a diagnosis could put the boy in a “weird” category and stigmatize him. Since he wasn’t having serious academic problems, the neurologist said there was no point in giving him the diagnosis.
 
“He’s just a pain in the butt for the teachers to deal with,” says Szabo. “I think once a teacher sees it (Asperger’s) on his file, it’s a wash. They feel there’s no point.”
 
She may reconsider one day, she says, especially if it means he gets more time for test-taking.  Barring that, she doesn’t see any advantage.
 
Sally Rubin, whose adult son, Sam, has high-functioning autism, agrees that a label can be stigmatizing.
 
The Oakland resident is grateful for the speech and language therapy her son received when he was in a special education school. But there were plenty of times when Rubin says that all people saw was a kid with autism.
 
When Sam was first diagnosed, a specialist told her he was never going to talk, go to school, have friends or marry. The specialist told the parents that they should start saving their money because they would have to support him the rest of their lives.
 
Since then, Sam Rubin has published several books and gone to college, among other accomplishments.
 
“Labels can help and hurt at the same time,” says Rubin. “If you say my son has high-functioning autism, that’s all they see. They don’t see the brilliant kid that he is.”
 
Teresa Mills-Faraudo is an associate editor at Bay Area Parent and a mother of two.
 
 
Resources
 
Diagnosing Learning Disorders, Second Edition: A Neuropsychological Framework, by Bruce F. Pennington, The Guilford Press, 2008.
 
Please Don’t Label My Child: Break the Doctor-Diagnosis-Drug Cycle and Discover Safe, Effective Choices for Your Child’s Emotional Health, by Scott Shannon and Emily Heckman, Rodale Inc., 2007.