While much attention has focused on how the COVID-19 pandemic disrupted schools and therapy services for children with autism, a quieter crisis has been unfolding: the potential delay in autism diagnoses for nearly one million children across the United States.
According to research highlighted by Autism Parenting Magazine, more than 982,000 children suspected of having autism could experience delays in receiving formal diagnoses due to pandemic-related disruptions in diagnostic services. The evidence for this alarming trend comes from an unexpected source: Google search data revealing how parents are struggling to access professional evaluations.
Since April 2020, searches for “early signs of autism in toddlers” have surged 350%, while queries for “signs of autism in kids” have jumped 120% during the same period. These dramatic increases suggest parents are turning to internet research because they cannot easily access the professional diagnostic services they need.
Why Search Data Tells a Troubling Story
The spike in parent-led online searches for autism symptoms points to a fundamental breakdown in diagnostic access. Under normal circumstances, parents concerned about their child’s development would consult pediatricians, who would refer them to specialists for comprehensive evaluations. The dramatic increase in Google searches suggests this pathway has been significantly disrupted.
When parents resort to searching for developmental milestone information online rather than getting timely professional assessments, it indicates several potential problems. Pediatric well-child visits may have been postponed during lockdowns. Developmental screening programs in daycares and preschools may have been suspended. And perhaps most critically, the specialists who conduct formal autism evaluations may have reduced availability or lengthy waitlists.
The 350% increase in searches about toddler autism signs is particularly concerning because early intervention is most effective when children receive diagnoses and begin services before age three. Every month of diagnostic delay during these critical developmental windows represents lost opportunities for intervention that could significantly impact long-term outcomes.
How COVID-19 Disrupted Autism Diagnostic Services
The pandemic hit autism diagnostic services with particular force. Comprehensive autism evaluations typically require multiple in-person sessions where clinicians directly observe children’s social interactions, communication patterns, play behaviors, and responses to structured activities. These assessments are difficult to conduct virtually with the same reliability as in-person evaluations.
When stay-at-home orders and social distancing requirements took effect, many diagnostic clinics were forced to close temporarily or dramatically reduce capacity. Even as restrictions eased, practices had to implement new protocols that reduced the number of families they could see daily. Enhanced cleaning between appointments, reduced waiting room capacity, and personal protective equipment requirements all slowed throughput.
Some diagnostic centers attempted to shift portions of evaluations online, using telehealth platforms to conduct parent interviews and observe children through video. While these adaptations helped maintain some service continuity, remote assessments have limitations. Clinicians lose the ability to directly interact with children, gauge certain behavioral responses, and conduct standardized assessment measures that require specific materials and controlled environments.
The result has been a significant contraction in diagnostic service availability precisely when demand remains constant or has potentially increased as parents spend more time at home observing their children’s development.
The Pre-Existing Shortage That COVID Made Worse
COVID-19 didn’t create the autism diagnostic shortage—it dramatically exacerbated an already serious problem. Even before the pandemic, families commonly faced wait times of six months to over a year for comprehensive autism evaluations in many parts of the country.
This shortage exists because autism diagnosis requires specialized expertise that relatively few clinicians possess. Comprehensive evaluations typically involve developmental pediatricians, pediatric psychologists, or other specialists trained in administering and interpreting standardized diagnostic instruments like the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R).
Training clinicians to conduct these evaluations requires significant time and specialized education. The pool of qualified diagnostic professionals has not kept pace with rising autism prevalence rates, which have increased from 1 in 150 children in 2000 to approximately 1 in 36 children today, according to CDC estimates.
Geographic disparities compound the shortage. Urban areas typically have more diagnostic resources, while rural and underserved communities often have few or no local specialists. Families in these areas may need to travel hours to reach diagnostic centers, creating additional barriers of time and expense.
The Diagnostic Bottleneck in Autism Care
Chris Donovan, a healthcare transactional lawyer and partner at Foley & Lardner LLP, identified autism diagnostics as a critical bottleneck even before COVID-19 emerged. Speaking to Behavioral Health Business in January 2020, Donovan noted that diagnosis represented an area of especially high need and growing opportunity within autism services.
The bottleneck creates cascading problems throughout the autism care continuum. Children cannot access therapy services without formal diagnoses in most cases. Insurance typically won’t authorize and pay for applied behavior analysis, speech therapy, or occupational therapy for autism without diagnostic documentation. Schools can’t develop appropriate Individualized Education Programs without evaluation results.
This means diagnostic delays don’t just postpone paperwork—they prevent children from receiving any autism-specific interventions. A six-month wait for diagnosis translates into six months without targeted therapy during critical developmental periods. For toddlers and young children, this represents a substantial portion of their early childhood.
The shortage also affects diagnostic quality. When evaluators are overwhelmed with demand and facing long waitlists, there’s pressure to conduct assessments quickly rather than thoroughly. Families may receive less time with diagnosticians, less comprehensive feedback, and fewer recommendations for appropriate services and supports.
Market Response and Private Equity Interest
The persistent diagnostic shortage, combined with strong demand and favorable reimbursement for evaluation services, has attracted attention from autism treatment providers looking to expand their service offerings. As Donovan observed in early 2020, a growing number of providers were adding diagnostic capabilities to supplement their treatment businesses.
This vertical integration makes strategic sense for several reasons. Treatment providers with in-house diagnostic services can control the entire patient journey from evaluation through ongoing therapy. They eliminate the external referral step that creates friction and potential patient loss. And they capture additional revenue from diagnostic services that might otherwise go to independent specialists.
For families, integrated diagnostic and treatment services can reduce wait times and improve care coordination. Rather than getting diagnosed at one location and then joining a waitlist for treatment at another provider, they can potentially transition seamlessly from evaluation to therapy within the same organization.
Private equity firms backing autism treatment platforms have recognized this strategic value. As Donovan noted, platforms with comprehensive service suites including diagnostics increasingly attracted PE attention and financing. The ability to serve families from initial concerns through long-term treatment represents a competitive advantage in fragmented markets.
The addition of diagnostic arms by PE-backed platforms also addresses capacity constraints industry-wide. Each provider that adds diagnostic capabilities marginally improves overall supply, though likely not at the pace needed to eliminate shortages entirely.
The Long-Term Implications for Children and Families
The potential delay in diagnoses for nearly one million children carries serious long-term implications. Research consistently demonstrates that early intensive intervention produces better outcomes for children with autism. The window for maximum neuroplasticity and developmental responsiveness is narrowest in early childhood.
Children who receive diagnoses and begin services at age two or three typically make greater gains in communication, social skills, and adaptive functioning than those who start intervention at age five or six. Diagnostic delays that push back the start of treatment by months or years may reduce the ultimate effectiveness of intervention.
Beyond clinical outcomes, delayed diagnoses create prolonged uncertainty and stress for families. Parents who suspect autism but lack confirmation struggle to access resources, connect with support networks, and understand what their children need. They may implement inappropriate interventions or miss opportunities to adapt their parenting approaches to their children’s neurodevelopmental profiles.
Educational impacts compound over time. Children without formal diagnoses may not receive appropriate school supports and accommodations. They may be misunderstood by teachers, disciplined for behaviors related to undiagnosed autism, or placed in environments that don’t match their learning needs.
The COVID-induced expansion of diagnostic delays also has equity implications. Families with resources can often navigate waitlists by seeking evaluations at multiple providers, traveling to distant specialists, or paying out-of-pocket for private assessments. Lower-income families, those in rural areas, and families facing other barriers have fewer options for circumventing delays.
Technology as Potential Solution
The pandemic forced rapid adoption of telehealth across healthcare, including diagnostic services. While remote autism evaluations have limitations, ongoing refinement of virtual assessment protocols could expand diagnostic capacity long-term.
Telehealth diagnostic models may never fully replace in-person evaluations, but hybrid approaches combining virtual parent interviews, remote observation, and targeted in-person components could reduce overall appointment time and increase the number of families clinicians can serve. This could help address geographic disparities by allowing specialists to conduct portions of evaluations remotely for families in underserved areas.
Some organizations are also exploring artificial intelligence and machine learning applications to support diagnostic processes. While these technologies won’t replace clinical judgment, they could potentially help with screening, data analysis, and identification of children who need comprehensive evaluations, thus improving efficiency in diagnostic pathways.
Looking Ahead
As the pandemic’s impacts continue to reverberate through healthcare systems, the diagnostic delays affecting nearly one million children with suspected autism demand attention from policymakers, healthcare organizations, and investors in autism services.
Addressing the shortage will require multiple approaches: training more diagnostic specialists, developing efficient telehealth protocols, supporting vertical integration by treatment providers, and potentially creating alternative diagnostic pathways that maintain accuracy while increasing capacity.
For the families represented in those Google search statistics—parents desperately seeking information about their children’s development—the wait for diagnosis represents not just bureaucratic delay but lost opportunities for intervention during irreplaceable developmental windows. The 350% surge in searches for autism signs in toddlers reflects an urgent unmet need that predated COVID-19 but has been significantly worsened by the pandemic’s disruption of diagnostic services.
The trend Donovan identified in January 2020, with providers adding diagnostic capabilities and PE firms backing comprehensive platforms, will likely accelerate as the industry recognizes both the clinical imperative and market opportunity in expanding diagnostic capacity. Whether that expansion happens fast enough to prevent long-term harm to the nearly one million children facing delays remains an open and critical question.
