I hesitated, as I often do when I am asked this question. Parents are understandably eager for more information after their child receives an autism diagnosis. But I struggle with the idea of an autism spectrum. To me, the concept suggests that children can be distributed along a scale that ranges from “normal” to not. This kind of sorting can obscure the real strengths that accompany many developmental disabilities
Several months ago, I sat in my office with the family of a 4-year-old girl called April* who had recently been diagnosed with autism. April had already made tremendous progress with language as well as behavior. She was speaking in short phrases, making better eye contact, and was more interested in other children. But she was still struggling to understand more complicated directions and to master toilet training. April’s parents wanted my opinion as a developmental pediatrician about where their daughter fell on the autism spectrum and what her future might look like.
I hesitated, as I often do when I am asked this question. Parents are understandably eager for more information after their child receives an autism diagnosis. But I struggle with the idea of an autism spectrum. To me, the concept suggests that children can be distributed along a scale that ranges from “normal” to not. This kind of sorting can obscure the real strengths that accompany many developmental disabilities.
I believe it’s high time the US and countries around the world began altering our perceptions of what is normal. Primary-care providers, as well as specialists in developmental disabilities, are on the front lines of helping children and their families understand what an autism diagnosis means. This means we have a special responsibility. We need to help parents understand that their goal should be to support children’s growth as individuals—not to nudge kids toward culturally conditioned ideas of normalcy.
Most families don’t anticipate raising a child with autism. The prospect can spark fears about the unknown and the future, as well as worries about the stigma
still associated with a diagnosis of autism. Yet the diagnosis is increasingly common. A recent survey from the U.S. Centers for Disease Control and Prevention indicates that 1 in 45
children have autism, or 2%, based on parental reports.
As autism diagnoses become more prevalent, insurance companies and state agencies sometimes ask for ratings on the severity of the diagnosis—thus presenting a quandary for medical professionals.
One way to combat reductive labels is to be more careful with the language we use to discuss autism. Although autism is currently classified as a disability, it can also be considered a distinct learning style that impacts social behavior and communication. Renowned autism researcher Dr. Simon Baron-Cohen has proposed replacing the word “disorder” with the term “condition,” which is not only less stigmatizing but also more accurate.
It’s also important for medical professionals to help families understand that an autism diagnosis doesn’t mean there’s a problem that needs to be fixed. Instead we should look to individuals like poet Rajarshi “Tito” Mukhopadhyay, a man with autism
who is minimally verbal. Mukhopadhyay uses complex language to explain the thoughts he cannot say out loud. In one of his poems, he describes how he feels when he stops spinning around a room: “My body scatters / And it’s so difficult to collect it together again.”
People like Mukhopadhyay should remind doctors, educators and therapists to emphasize to children and their families that an autism diagnosis should not limit our perceptions of a person’s full range of abilities. In fact, people with autism often show a variety of intellectual strengths
in areas ranging from creative thinking to visual processing to memory.
Keeping all this in mind, I explained to April’s parents that as children grow and change, so do their levels of communication, cognition and independence. We would keep discussing her strengths and challenges as she matured. I also told them that it was important to remember April’s strength in reading and the progress she’d already made.
At the same time, I listened carefully to her parents’ fears. They were understandably worried about April’s speech and her ability to make friends. They didn’t want her classmates to make fun of her or see her as different.
These are reasonable concerns—particularly in a society that still lacks a clear understanding of autism and many other kinds of developmental disabilities. But the more medical professionals and health-care providers help to move the conversation about autism away from limited standards of normalcy, the more likely it is that children like April will have the confidence and support to find their place in the world.
*Details have been changed to protect patients’ privacy.