Autism Has Never Been One Thing

Opinion|We Are Not Going to ‘Solve’ Autism. And That’s OK.

When I look back at home videos of my daughter Isabel, I see the signs of autism clearly. But at the time, in 1992, I couldn’t. Autism was still considered rare. In one video, when Isabel was 15 months old, she sits quietly, putting coins in a piggy bank. She doesn’t respond to her name or look at us. My wife and I marvel at her focus and precision and predict she will be a scientist.

In a widely anticipated news conference on Monday, President Trump declared that there was “nothing more important” in his presidency than reducing the prevalence of autism. He claimed that his administration would virtually eliminate the condition, which he called a “horrible crisis” and which a top federal health official suggested might be “entirely preventable.”

The administration’s project is built on the premise that an autism diagnosis is a terrible tragedy and that scientists and doctors have failed to prevent what Health Secretary Robert F. Kennedy Jr. has called an “epidemic.”

But science has not failed. One reason we have so many questions about autism today is that we’ve learned so much about it and how to address it. Thousands of highly trained researchers and clinicians have generated an extraordinary amount of information about autism’s genetics and neurobiology, developed reliable early detection methods, expanded special education and improved behavioral and medical therapies. To think otherwise reveals a deep and willful ignorance of the history of autism and its present-day complexity.

Isabel was 2½ when she was diagnosed with the unwieldy and now obsolete “Pervasive Developmental Disorder, Not Otherwise Specified,” or PDD-NOS, an old term for someone with autism who had relatively low support needs, or who did not meet every criterion in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-III-R).

Many years later, when I asked our doctor if he had considered diagnosing Isabel with autism, he confessed that he was scared the word would devastate us. Autism was a frightening diagnosis in the ’90s, suggesting one’s child had a bleak future. He also understood how parents can blame themselves for their child’s problems. My wife and I searched our memories for what we might have done wrong — a chemical we used while renovating our new house, even that roller coaster ride before we knew she was pregnant.