Improvements in early diagnosis and therapeutic interventions mean that a record number of children — one in 44 8-year-olds in the U.S. — are receiving a diagnosis of autism and becoming eligible for treatment. But these diagnoses don’t mean much when kids are waiting months and months for care during vital windows, and when the pandemic is creating shortages that make the situation worse than ever.
The issue boils down to the fact that the health care system isn’t set up to meet these growing needs while the pandemic has made both specialists and in-home therapists hard to come by — and when it comes to early interventions for autism, delays in diagnosis and treatment can have long-lasting consequences and permanently change outcomes for kids.
"The impact on families having to wait for diagnosis or treatment can be devastating," Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, told CNN. "They know in their gut something is seriously not right and that there is help out there, and yet they are helpless to do anything about it."
While the pandemic has worsened delays, insurers’ requirements that professionals with certain credentials make the initial diagnosis have created a backlog of waiting families in many parts of the country. Insurance companies will often not accept a diagnosis from a regular pediatrician, instead demanding certification from a developmental-behavioral pediatrician, psychiatrist, psychologist, or neurologist, before they will cover the costs of a child’s therapeutic treatment.
“If we solely rely on specialists, we’re setting ourselves up for failure because there aren’t enough of us. We need the insurance companies on board,” Dr. Sharief Taraman, a pediatric neurologist and board member of the Orange County, California, chapter of the American Academy of Pediatrics, told Kaiser Health News.
Families with the financial means are able to bypass these waits by paying out-of-pocket for a neuropsychological evaluation, which can cost several thousand dollars or more. Families without these resources and families in rural areas are often simply at the mercy of the system.
"You would never allow a kid with cancer to experience these waits," Dr. Kristin Sohl, the chair of the American Academy of Pediatrics' Council on Children With Disabilities Autism Subcommittee, told CNN.
Autism, which is more than four times as common in boys than in girls, can be diagnosed when a child is as young as 2 or 3 years of age, and sometimes even earlier. Autism can cause a broad spectrum of communicative and behavioral challenges, and early intervention therapies given at or before preschool age are generally recommended. Because young children’s brains have greater plasticity, or the ability to adapt and change, therapies given earlier are more likely to have positive effects in the long-term.
Applied Behavioral Analysis (ABA), an intensive therapeutic regimen that can take 20-40 hours per week, is the most common intervention prescribed to children with autism. While the treatment has been criticized by some people with autism as a cruel attempt to force them to exhibit ‘normal’ behaviors rather than accepting their neurodiversity, parents often credit ABA with helping their children learn to communicate and engage with the world. Some children progress so much with the therapy that they no longer meet the diagnostic criteria for autism as they grow older.
Although time is of the essence, with earlier therapy more likely to lead to progress, lots of children face yet another set of delays when searching for a provider. Medicaid reimbursements for ABA vary from state-to-state, and current staffing shortages mean that patients may wait weeks or months to be matched with a therapist. With the pandemic, many of these therapists have left to pursuit other careers or because virtual care was too frustrating. High turnover means that kids with autism who take time to get to know providers have difficulty making progress.
Again, families able to pay for private therapists may be able to find help sooner, entrenching inequities in who has access to potentially life-changing treatment.
If a child has to wait months for an appointment with a specialist who can make an autism diagnosis that their insurance company will accept, then spend more months waiting for an available therapist, these delays easily add up to a year — or longer. With additional months of in-person appointments missed or pushed back during the pandemic, the end result is that millions of children have been shortchanged by this lack of access to care.
How can we solve these problems? It starts with insurance companies changing their rules so that kids can get diagnosed and into therapy more quickly. But it also involves us treating therapists better and continuing to fight back against the stigma surrounding autism to begin with.