I wasn’t all that surprised when the developmental pediatrician officially confirmed last week, after additional testing and evaluation, that my youngest son no longer meets the criteria for autism.
I’ve started to tell people slowly because I’ve been hesitant to perpetuate the idea that he was “cured.” That suggests there is something inherently wrong with being autistic or something to celebrate now that he isn’t. When my youngest son learned he wasn’t autistic anymore, he solemnly brought the news home to his brother. “You’re autistic, and that’s okay,” he told his brother. “But I’m not. We’re different.” He grieved this loss, of what he perceived to be a shared exceptionalism, for days.
Peter J. Smith, an associate professor of pediatrics and neurological disorder expert at the University of Chicago medical center, said he also doesn’t use the word “cured” for children who no longer meet the criteria for autism because it emphasizes the medical nature of how autism is fundamentally viewed and treated.
There is currently no biological marker for autism the way there is for Down syndrome or Fragile X, for example. Autism is diagnosed primarily by observing behaviors like poor eye contact and repetitive play.
As the behavior changes, the diagnosis can change, Smith said.
“I think this is probably going to happen more as time goes on for a bunch of reasons,” he said. “We keep changing the criteria. We’re getting therapy involved earlier, and children are changing.”
Smith said an autism diagnosis is not “all bad.”
“That’s really true,” he said. “It’s not just my embracing the disability rights movement, which I do. Human variation isn’t single-directional.”
For my children, their autism diagnosis has been a key to resources, ensuring they had access to accommodations and, most important for my oldest son, that insurance paid for his behavior therapy. The autism diagnosis gave me leverage that I lost when the doctor at Lurie Children’s Hospital of Chicago made my youngest son’s autism diagnosis “inactive” and replaced it with ADHD. It will be harder to press for the support he needs, particularly at school, even though many of the behaviors associated with ADHD can be addressed through some of the same behavioral interventions as autism.
In fact, that’s one of the reasons the American Academy of Pediatrics encourages parents to seek therapy even before an official autism diagnosis, which typically occurs around age 3. It also reinforced that pediatricians should screen for developmental and behavioral issues beginning at nine months and again at 18 and 30 months. It recommended children be screened specifically for autism at 18 months and at 24 months. Both of my sons were flagged for autism by our pediatrician at 18 months.
Some of the earliest markers for autism may be disordered sleep and issues with food, the report found. Sensory issues also may be noticeable in young children.
The new guidelines are based on a clinical report published in the January 2020 issue of Pediatrics. That report noted that 9 percent of the children diagnosed with autism at an early age may not meet diagnostic criteria for autism by young adulthood. That’s how important early intervention and therapy may be for helping autistic children acquire necessary social and communication skills.
“The first really important part is early identification and referral for treatment,” said Susan E. Levy, a co-author of the report. “The second is that autism is not just autism alone. There are many children affected by other behavior and medical issues. Behavior interventions, plural, are important.”
As many as 40 percent to 60 percent of autistic school-aged children and adults have anxiety disorders, according to the report, and 40 percent have an intellectual disability,
Additionally, not enough emphasis has been placed on supporting autistic children into adulthood, said Levy, a developmental and behavioral pediatrician at Children's Hospital of Philadelphia and a professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania. “We need to be proactive about that,” she added.
The report also emphasizes the importance of other therapeutic models beyond applied behavioral analysis, or ABA, which is the most common behavioral therapy used for autistic children and the one that insurance companies prefer. Many autistic adults have pushed back against ABA in recent years, criticizing it for trying to force autistic children to behave in a way that is counter to how their brains work. (My own sons did ABA, and there are elements of it that seemed to benefit them, but we now do other therapy.)
The clinical report specifically calls attention to “DIR Floortime,” a relationship-based therapy, and TEACCH, which emphasizes structure in a classroom setting, including predictable organization of activities and use of visual schedules. By doing so, it may make it easier for parents to lobby for insurance coverage.
“There’s more data available and emerging evidence of other types of behavior intervention, particularly those that involve parent teaching,” Levy said.
The new guidelines reflect significant changes in the medical field’s understanding of autism since 2007, including when symptoms overlap with other issues such as intellectual disability, language disorders, attention-deficit/hyperactivity disorder, anxiety, seizures and sleep, feeding and gastrointestinal problems.
That’s important because even when a child loses an autism diagnosis, they still may have other disorders or lingering issues (like my son’s ADHD).
In a study published earlier this year in the Journal of Child Neurology, researchers at the Albert Einstein College of Medicine and Montefiore Health System found the vast majority of children who lose their autism diagnosis still have difficulties that require therapeutic and educational support.
In the study, the researchers reviewed clinical records of 569 patients who were diagnosed with autism between 2003 and 2013 in the Bronx. The majority had received early intervention services, a mix of speech and occupational therapies, special instruction and ABA.
At follow-up, 7 percent of the original patients no longer met the diagnostic criteria for autism spectrum disorder. But the majority had other issues, including language or learning disabilities, ADHD, oppositional defiant disorder, mood or anxiety disorders. Only 8 percent had no other problems and were considered to have “recovered” from autism.
“I think there are kids for whom the early ASD diagnosis is a sign that something is awry that will need to declare itself over time,” said lead author Lisa Shulman, a physician and interim director of the Rose F. Kennedy Children's Evaluation and Rehabilitation Center at Montefiore. “I also think there are some kids who really respond to intervention but have some leftover stuff. I think some kids are a combination of those two groups. And I think some kids are given the diagnosis early who don't warrant it by error or design.”
It’s hard to say for certain which of these was the case for my youngest son. Frankly, I’m not sure it matters.
I asked Smith, of the University of Chicago, about this. “Would he have evolved this way without intervention? I’m convinced by the data that you did change his course,” Smith said. “I’m not so hung up on the diagnosis.”
That’s good enough for me.
Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an associate professor of journalism at Columbia College Chicago and executive producer of “Don’t Forget Me,” a documentary on autism in Morocco, where her sons were born.