The Language of Autism is Failing our Children
When faced with an autism diagnosis, many parents immediately want to know where on the spectrum their child falls. In other words, is my child low-functioning or high-functioning? The question is understandable. Parents are really asking: “What are the chances that my child will have a normal, successful life?” or “What is the likelihood of a good outcome for my child?”
However, according to several new studies recently reported by The Atlantic, the terms high-functioning and low-functioning, as applied to autism, are not only outdated and inaccurate, but also potentially damaging to children with autism and their families.
Why “Low-Functioning Autism” Doesn’t Equal Poor Results
A long-term Canadian study is reexamining how we think about the autism spectrum, autism severity, and the terms high and low-functioning autism. Researchers at five different universities have been tracking over 400 children with autism from the point of diagnosis. This study has been ongoing since 2004 and looks at how symptoms and abilities change over years, or even decades, in an attempt to explain why children who have similar diagnoses diverge after the initial autism assessment, with some having good outcomes and others having poorer outcomes.
What they have discovered is that the traditional label of “low-functioning autism” doesn’t provide a full, holistic picture of a child’s potential, or a good method for predicting outcomes. For example, many children who are considered high-functioning do better in school and are better at the daily activities of life, but struggle with communication, social interactions, and building meaningful relationships. In contrast, children with autism that are considered low-functioning may have meaningful relationships. Most parents of children with autism consider social interactions, and normalization within their peer group, to be one of the key indicators of a successful life for their child.
One explanation for this discrepancy is that, traditionally, a “low-functioning” autism diagnosis relies almost entirely on IQ score, which doesn’t give the full picture, according to Peter Szatmari, the chief of the Child and Youth Mental Health Collaborative at the Center for Addiction and Mental Health and the Hospital for Sick Children in Toronto, who leads the long-term Canadian study. “It’s not a measure of functioning; it’s a measure of whether or not they’ve got intellectual disability,” he says. “It doesn’t reflect how kids with autism do in the real world.”
In addition, IQ is too often affected by comorbid conditions such as physical deformities, developmental delays, behavioral issues, and other handicaps. It’s difficult to measure intelligence if the child with autism can’t sit still or hold a pencil, after all. Too often, after addressing physical and sensory integration issues, parents discover that their “low-functioning” child with autism is actually quite bright. Springbrook contracts with a Pediatric Neuropsychologist with extensive autism experience to provide accurate IQ testing.
Unfortunately, since many residential treatment centers for autism focus most of their resources on “high-functioning” children, these outdated labels can dramatically affect a family’s ability to get their child the autism treatments and therapies they need. That’s just one reason why studies that question the labels that we apply to children with autism are so important. Eventually, researchers hope to develop a common language that will help therapists, clinicians, researchers, and families understand each other more readily. In addition, the researchers aim to move toward a language that focuses on abilities in different aspects of life, including social interactions and communication, and that provides a richer understanding of autism and daily functioning.
The Springbrook Autism Program offers therapies, treatments, and behavioral interventions for children at all functioning levels. Contact us online or call our facility at 864.834.8013 for a private consultation.