The State of Pediatric Autism Diagnosis in the U.S.: Gridlocks, Inefficiencies, and Barriers Persist
This first-of-its-kind survey of specialty centers across the U.S. confirms that families with concerns about their child’s development face unacceptably long wait times, unnecessarily complex and highly variable processes, and reimbursement inequities – all adding up to delayed diagnosis and missed opportunities for life-changing early intervention for children.
Cognoa recently conducted a survey of 111 specialty centers to assess the state of autism diagnosis across the United States. The survey confirms the crisis of care for children and families seeking a diagnosis and those affected by autism. The delays in diagnosis revealed by this study demonstrate why many children with autism are missing a critical early intervention period when the most significant, positive impacts on neurological development can be made. This report of the survey’s key findings sheds light on the inequities and inefficiencies in the system that are leaving many children and families behind. The survey was designed and coordinated by Scott Badesch, Former President of the Autism Society of America.
Multiple factors cause delays
The survey uncovers several issues with the current processes for autism diagnosis, including:
- Unacceptable wait times for evaluations
- Extreme and unnecessary length of assessment processes
- Heavy documentation burden for health care providers
- Lack of a standard of care for diagnosis
- Access disparities and burdensome reimbursement processes
Families wait months or more for answers
Wait times for autism diagnosis are unacceptably long for many children across the U.S. Nearly two-thirds of specialty centers that conduct autism evaluations (61%) had wait times longer than 4 months. Of that group, 25% reported waitlists of more than half a year. 21% reported waitlists of more than a year or had waitlists that were so full that they were no longer taking new referrals.
“I can’t think of a single condition for which such long wait times would be acceptable,” said Scott Badesch, Former President of the Autism Society of America. “Cognoa’s findings highlight the painful reality that children and families face in their pursuit of answers and diagnoses at a period in the child development when time is of the essence. Policymakers and payers have the power to significantly and positively impact the lives of so many children and families who deserve access to early and equitable diagnoses upon early concern – not months or years later. Innovative solutions exist and we must act now to equip clinicians and provide a straightforward, affordable pathway for all families to access them.”
“I can’t think of a single condition for which such long wait times
would be acceptable.”
– Scott Badesch, Former President of the Autism Society of America
Not enough specialists for the volume of patients
Demand is far exceeding supply: the volume of children needing evaluation exceeds the limited number of specialists who make those assessments. More than two-thirds of centers (69%) report shortages in their workforce. 61% percent of centers also report that the large, sheer volume of children referred to them is a barrier to making evaluations in a reasonable time frame. The number of children diagnosed with autism has risen 114% since the year 2000.
“We also take over one thousand calls from the community every
year, and the most common request is for autism assessments.”
– survey respondent
(chart to show available providers vs patients or
show workforce shortages)
“In the U.S., there are ten times as many primary care physicians as there are autism specialists, so it’s no wonder that 61% of specialty centers identified the large volume of referrals as a key barrier to timely evaluation,” said Dr. Sharief Taraman, CEO of Cognoa. “While unsurprising, this is still an alarming finding that healthcare leaders and policymakers must take seriously when directing future resources and developing initiatives to standardize, equitize, and streamline evaluation processes for families, irrespective of insurance type. The rise in prevalence of autism in children in this country, coupled with our survey findings, proves that we as a nation are failing these children. We need to expand the pool of care providers these children and their families are given access to, and empowering primary care physicians is a vital, viable, first step.”
“In the US, there are ten times as many primary care physicians as
there are autism specialists.”
– Sharief Taraman, CEO of Cognoa
Unnecessarily complicated & time-consuming processes
Another obstacle slowing down time to diagnosis is extremely time-intensive lengthy evaluations that are routinely given to children irrespective of the complexity of their presentation. In more than 4 out of 5 centers (83%), evaluations take more than three hours. One of every four specialty centers report that their evaluations can take as long as 8 hours.
“Wait times, prolonged report writing time, and efficiency in the intake process are all real challenges in the diagnosis of children and adults with autism,” said another clinician in the survey. “A number of these challenges are perpetuated by professionals who continue to provide extensive evaluations that often duplicate those that have been completed within the school system and early intervention programs.”
Another clinician pointed out that the documentation requirements of autism assessment can be a burden for families as well, saying “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.”
“Currently, there is no financial or professional incentive for efficiency as we can essentially bill for time, so providers can take as much time as they want with each patient.”
– survey respondent
Barriers to reimbursement shut out the already disadvantaged
Access to health care providers who provide autism assessments is also a contributor to delayed diagnosis, as families struggle to ﬁnd ways to pay for these lengthy evaluations. According to the study, cumbersome reimbursement processes or inadequate reimbursement make testing for autism a challenge for practices and families alike.
“Insurance companies create barriers to diagnosing eﬃciently,” said one provider in the survey. “One way they do this is by mandating speciﬁc measures that have known biases and disparities.”
Disadvantaged families are aﬀected the most, as 44% of centers do not take Medicaid, forcing families to find other ways to pay or forego assessment. Meanwhile, only 65% of practices take commercial insurance, so if families cannot pay costs out of pocket up front, they also risk being left behind altogether.
“The barriers to accepting health insurance are a real issue,” said a clinician in the survey. “Extremely low reimbursement rates from insurance means we cannot aﬀord to accept insurance at this time. We are private pay as a result, which means that only families that can aﬀord to pay out of pocket can access our practice. And for those who cannot aﬀord it, wait times are much longer for practices that accept insurance or Medicaid.”
“Only families that can afford to pay out of pocket can access our practice.”
– survey respondent
Another specialist summarized the burden that inadequate reimbursement has on the practice, saying, “Honestly, it just doesn’t pay well for the amount and intensity necessary for a helpful report.”
There is no ‘real’ standard of care
One more factor that complicates autism diagnosis in the U.S. is that there is not a single standard of care universally used to evaluate children with suspected developmental delay. Among healthcare providers across the country, more than 30 diﬀerent tools are variously used to assess patients. The wide range of evaluative tools utilized may contribute to inequity in results and outcomes for patients from center to center. “This is simply unacceptable,” said ((SPEAKER NAME/TITLE)). “Would we accept no standard of care for heart disease, or diabetes, or depression? The healthcare community, including policy makers and payers, must take action for progress and change particularly in light of the latest innovations available to us. Cognoa’s diagnostic technology is clinically proven, rigorously tested, and FDA- regulated. We need to act now. Every child and family deserves the right to access early and equitable diagnoses as soon as they have concern—not months or years later. We can act now to make change and dramatically streamline the process to life – changing early interventions for so many families.”
“Every child and family deserves the right to access early and equitable diagnoses as soon as they have concern—not months or years later.”
– survey respondent
A faster, simpler, more accessible option is needed
With so many logistical and financial barriers to diagnosis and care, not only are children missing out on potentially life- changing early interventions, but families are faced with long wait times while their worries about their children go unanswered. Families are not only impacted in terms of care, but also financially, as they must balance the dual challenge of the high cost of care and the potential for considerable missed work time and income, as they attempt to navigate a complex, fragmented, and inequitable system.
“Advocates would do well to support policies that encourage providers to get out of their own way,” said one specialist in the survey. “We need to prioritize the needs of their local populations by adopting innovative solutions which include comprehensive integration of APPs (advanced practice providers), general pediatricians with additional training, and other mental health workers, especially when these services are provided within a patient’s medical home in an integrated model. To be clear, this can be done in a cost-effective manner that’s good for morale and improves providers personal satisfaction — especially if the work is done that clearly advances goals related to diversity and equity.”
Considering all the factors that this study has identiﬁed as barriers to timely evaluation and care for autism, there is a considerable need for standardized assessments that are easier to use, accurate, and accessible for a wide range of patients.
About Autism in the US
In the U.S., as many as 25% of children are at risk for a developmental delay, and autism is estimated to affect 1 in 36 children. Autism can be reliably diagnosed in children as young as 18 months, yet the average age of diagnosis has remained stagnant for decades at over 4 years of age. Non-white children, females, and those from rural areas or disadvantaged socio-economic backgrounds are often diagnosed even later or missed altogether. Research shows that early interventions can improve lifelong outcomes for children. All-cause medical costs are approximately double for children who experience a longer time to diagnosis compared with a shorter time to diagnosis.
Cognoa is a pediatric behavioral health company developing AI-based technologies to enable early and equitable diagnosis and care for children living with developmental and behavioral health conditions. Cognoa’s lead product, Canvas Dx, is the first FDA authorized diagnostic device for autism. Its multidimensional, AI-based technology supports healthcare professionals’ early, accurate diagnosis of autism and can be used in the primary care and home settings. Cognoa’s portfolio covers a broad pipeline of diagnostic and therapeutic products for autism, speech and language, ADHD, and childhood anxiety. For more information, visit https://www.Cognoa.com/.
Both multi-practitioner and sole practitioner specialty centers conducting autism evaluations were identified through a combination of web searches and claims data analysis. A brief anonymous, English only, online survey was distributed to identified autism specialty centers across all U.S. states and the District of Columbia (n=1,004) via email. Responses were collected November 2022 through end of March 2023. The study received an IRB exemption from Advarra (Pro00067552).
Of 111 specialty centers, 61.76% were multi-practitioner diagnostic centers. The remaining 38.24% were sole practitioner centers. Responses were received from 38 unique states. Highest responses were received from CO (9%); MA (6%); PA , UT, TX, CA (all 5%), AZ, OH and VA (all 4%), NJ, RI, MS, NY, TN (all 3%).