Report: High wait times, poor reimbursement drive autism diagnosis delays

Nearly two-thirds of specialty centers that conduct autism evaluations have wait times longer than four months, according to a new report.

The report, focused on the state of pediatric autism diagnosis in the U.S., is based on a survey designed and conducted by Scott Badesch, former president of the Autism Society of America. Cognoa, maker of an FDA-approved, AI-powered diagnostic tool for autism, sponsored the study. The survey reached 111 specialty centers across the U.S., including hospitals, private practices, public health clinics, government agencies and academic entities. 

Its findings underscore “how dysfunctional the current state of affairs is,” Cognoa’s CEO Sharief Taraman, M.D., told Fierce Healthcare.

About 1 in 36 children have autism in the U.S. Though the majority of children with autism studied in 2020 had concerns about their development documented in their records before the age of 3, fewer than half received an evaluation by that age. Autism can in some cases be detected at 18 months of age or younger. Early intervention is critical to prevent worse downstream outcomes.

Nonwhite children, females and those from rural areas or lower socioeconomic backgrounds are often diagnosed even later or missed altogether. Early interventions improve lifelong outcomes for kids, whereas lack of or delayed treatment increase the likelihood of lifelong, comorbid mental health conditions. Medical costs are twice as high for kids with a longer time to diagnosis than a shorter time to diagnosis. 

‘Not acceptable’ wait times

Several factors contribute to long wait times, the survey found, including specialist shortages, lengthy evaluations, heavy documentation burden for providers, no standard of care for diagnostic processes and disparities in access due to limited reimbursement.

Of the two-thirds of centers that had wait times longer than four months, a quarter had a wait time of more than six months, while a fifth had a wait time of more than a year or had waitlists that were so full they were no longer accepting new referrals. 

Per a recent poll at the Society for Developmental & Behavioral Pediatrics annual meeting, referenced in the report, the numbers were even more dire. More than half of the audience self-reported waitlists of longer than nine months.

“Imagine your child is showing signs of autism, and imagine you are told your child cannot be diagnosed nor access therapies that would help your child for at least two years,” Badesch said in the report. “A person who suspects he or she has cancer, can and should get diagnosed within days. But if your child shows signs of autism, the wait time is months to years. This is not acceptable.”

Workforce shortages 

More than two-thirds of centers reported shortages in their workforce. Nearly two-thirds also reported that the volume of kids referred to them is a barrier to making evaluations in a reasonable time frame.

There are fewer than 800 developmental-behavioral pediatricians for every 19 million kids with developmental concerns, according to data from the American Academy of Pediatrics the report cited. And there are 11 child and adolescent psychiatrists for every 100,000 children, per the American Academy of Child & Adolescent Psychiatry. 

Though primary care clinicians like pediatricians are equipped to rapidly evaluate, diagnose and manage most kids with developmental delays and autism, an autism specialist is still often seen as the only valid option, according to Taraman. 

Taraman, former president of the AAP-Orange County Chapter, was division chief of pediatric neurology at Children’s Hospital of Orange County. There were only two autism centers in the county, he said. One had a maxed out waitlist, while the other would take up to nine months and required a referral from an in-network pediatrician. As a result, the neurology department was the de facto backup. Taraman said his waitlist was at 1,000. Despite doubling his neurology faculty, it wasn’t possible to see everyone, he said. That’s when he stepped down and became more involved at Cognoa.

“For me, that was a huge frustration,” he said. 

Lengthy evaluations

Lengthy, multidisciplinary team assessments have created barriers because they are time-intensive, specialist-dependent, hard to access and expensive, the report said. In more than four of five centers, evaluations take more than three hours. One of every four specialty centers report their evaluations can take eight hours.

These evaluations often duplicate those that have been completed within the school system and early intervention programs, according to one anonymous clinician highlighted in the report. There are also numerous logistical challenges that are barriers to even getting an evaluation, partly compounded by the fact that they are typically quite lengthy.

“The ability to complete all the documentation varies from family to family, and depends on their ability to complete forms, respond to calls, provide transportation, and be flexible with scheduling. Unfortunately, many families are not able to complete all the items needed,” a clinician was quoted as saying in the report.

“We’re in crisis mode,” Taraman said. “We’ve been in crisis mode for a while, but COVID made it worse.” 

Many kids born during the COVID-19 pandemic are experiencing stunted language development, Taraman explained. But it can be hard to tell whether that indicates autism or some other developmental delay. At the same time, with so many children experiencing delays, the entire frame of reference for doctors and parents is skewed, so it might also be easier to miss a legitimate concern, Taraman said.

PCPs have limited face time with patients, Taraman acknowledged. They can use questionnaires like Ages and Stages to evaluate for developmental delays. But there is a high need to empower primary care docs with tools like the one Cognoa has developed, known as CanvasDx, which leverages AI to help doctors sooner reach a diagnosis. 

“There's not a great solution if you have to rely on specialists in the current system,” Taraman said.

Reimbursement challenges

Barriers to reimbursement further disadvantage already disenfranchised communities. One way payers create barriers to diagnosing efficiently, according to a provider quoted in the report, is by mandating specific measures that have known biases and disparities. 

For providers, low reimbursement rates often mean clinics don’t take insurance, per the report. Though many states require certain payers to cover diagnosis and treatment, many clinics simply don’t accept insurance, the report found.

Nearly half of centers surveyed don’t take Medicaid, while only two-thirds take commercial insurance. “Only families that can afford to pay out of pocket can access our practice,” one respondent said in the survey. For those who can’t afford it, wait times are much higher at places that accept insurance or Medicaid, they added.

Cognoa is observing some traction with payers more inclined to accept a diagnosis from a pediatrician when accompanied by a tool like its CanvasDx, Taraman said. There is no other objective way to assess autism, like an imaging test or a blood marker, but a digital tool can offer that, Taraman said.

No standard of care

The lack of a single standard of care used to evaluate kids contributes to inequities and complications in autism diagnosis, the report said. From state to payer differences in requirements for an autism diagnosis to be recognized and reimbursement, more than 30 different tools are variously used to assess patients. These differences include the type of provider approved to conduct the evaluation (specialist versus pediatrician) and the specific tests required. 

From psychologists to neuro-psychologists to developmental-behavioral pediatricians to child and adolescent psychiatrists to pediatric neurologists, every specialty has its own consensus on the best assessment, Taraman explained. They require specialized training, are lengthy and have known biases that can result in higher false positive rates

All of these barriers mean kids are missing out on critical early interventions, the report concluded. Families are not only impacted in terms of care but also financially as they navigate a complex, fragmented and inequitable system. 

There is an urgent need for policies to support the reimbursement and access pathways of available FDA-regulated diagnostics that equip more providers to evaluate, diagnose and manage children within primary care, the report said. 

Solutions offered by one specialist in the survey included comprehensive integration of advanced practice providers, general pediatricians with additional training and other mental health workers. This can be done in a cost-effective way that is good for provider morale and advances better outcomes, they noted. 

The U.S. is slipping further from its target of increasing the proportion of kids with autism getting treatment by age 4. Its target is 78%. In 2016-17, the rate was at 60%. For 2020-21, the most recent data available, that dropped to 48%. 

“We’ve got to do something radical,” Taraman said. “It’s so hard to intervene later on.”