Online autism testing could give patients and caregivers more options for neuropsychological testing and help unclog the current diagnostic backlog.
There is a severe shortage of clinicians qualified and trained to perform diagnostics for autism or other neurodiversities. This creates a systematic bottleneck for those needing behavioral health services, delaying their care and potentially worsening their condition.
However, several organizations are creating services that enable online autism testing designed to meet the clinical standards of traditional assessments and bring about additional innovation in testing patients for autism.
“There’s an opportunity for this kind of testing to be better than what we have typically done in a clinic setting,” Dr. Monika Roots, co-founder and president of Bend Health, told Behavioral Health Business.
Bend Health is a Madison, Wisconsin-based virtual pediatric mental health company. In July 2023, it added virtual psychological and neuropsychological assessments to its offerings. The company is able to get children into neuropsychological testing in two to three weeks, Roots said.
Telehealth isn’t new, especially in behavioral health. In the 1950s, some psychiatric hospitals used closed-circuit television to provide virtual audio-visual appointments with providers. Today, the internet and other digital technologies make real-time audio-visual communication better and easier than ever before.
And since virtual diagnostics, such as online autism testing, are by default provided in a digital space, there is the opportunity to layer in additional technology, opening new vistas of innovation in the presently challenged part of the behavioral health industry.
Improving access
Providing online autism testing online or in other digital settings could help solve one of the biggest challenges in behavioral health, access. Expanding access to services is vital at a time when the demand for services and the increased recognition of autism as a condition have never been higher.
The phenomenon of accelerating autism diagnosis rates is largely the result of expanding early detection efforts. As many as 1 in 36 eight-year-olds has an autism diagnosis.
The Center for Disease Control and Prevention (CDC), which oversees the Autism and Developmental Disabilities Monitoring (ADDM) Network, recently reported that children with autism in 2020 were 60% more likely to be diagnosed by age 4 than in 2012.
“This is important because the earlier a child is identified with [autism], the earlier they can access services and support,” an ADDM Network report states.
And there is a growing body of evidence that “‘earlier is better’ with regard to interventions for young children with [autism],” a research review states.
There’s an opportunity for this kind of testing to be better than what we have typically done in a clinic setting.
Dr. Monika Roots, co-founder and president of Bend Health
However, so few clinicians can provide autism assessments that it’s not uncommon for waitlists to be months and even years long.
By the time they were three years old, 85% of children with autism had observable delays in their development. Still, the average age of diagnosis in the U.S. is four years and four months.
“Right now, families wait six to 12 months. In some parts of the United States, it can even be up to two years for an evaluation,” Cheryl Tierney, chief medical officer of Meliora Health, told BHB.
“If you delay the diagnosis, it delays access to services. That’s what we’re trying to solve — increasing accessibility from a geographic and specialty perspective in a timely manner.”
Meliora Health sees patients seeking diagnostic services in about two weeks from the time they seek an appointment. The company is a wholly-owned subsidiary of London-based digital pediatric behavioral health company Healios Ltd. Healios announced raising $16 million in late 2022.
Adapting online autism testing with fidelity
Before the coronavirus pandemic cemented telehealth services as a mainstay in behavioral health, research had validated the efficacy of diagnosing autism and other conditions online over the last decade or so.
For example, the Vanderbilt TELE-ASD-PEDS (TAP) is a caregiver-mediated virtual structured observation tool for children under 36 months old. This digital-native assessment is used by virtual diagnostics provider As You Are, a subsidiary of Syracuse, New York-based Quadrant Biosciences Inc., when providing online autism testing.
As You Are has pediatricians familiar with child development who the company specially trains to administer a battery of standardized assessments and observation tools for a few visits.
“We wanted this to be rigorous because we knew people were going to be a little bit skeptical from the outset,” Dr. Thomas Frazier, chief medical officer of As You Are, told BHB. “Now, people have gotten way less skeptical over the last couple of years because of the pandemic, because we had to move things online.
“But we knew at the very outset that people were going to want to make sure that this was rigorous and that we weren’t, essentially, pulling a fast one.”
As You Are uses other assessment tools, including validated questionnaires — such as the Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) and the Autism Symptom Dimensions Questionnaire (ASDQ) — and other structured observation tools, including the Childhood Autism Rating Scale, 2nd Edition (CARS 2).
If you delay the diagnosis, it delays access to services.
Cheryl Tierney, chief medical officer of Meliora Health
On top of that, As You Are feeds results into an evidence-based assessment process to generate the probability of autism, acting “as a guide, not as the end-all-be-all” for diagnosis.
Bend Health has a psychometrist, a clinician specializing in administering behavioral health tests, who does most of the assessments and questionnaires, and reserves high-level certification providers such as neuropsychologists to do the analysis and diagnoses.
Several experts said building family and patient health histories and conducting questionnaires are easily conducted with digital tools or via video chats.
Doing it better
Meliora Health has parents provide videos of their children as part of the assessment process. These naturalistic videos capture children exhibiting their most typical day-to-day behaviors. That adds to the company’s diagnostic accuracy, Tierney said.
“Even if we see them in person in a clinic or we see them through the video with a parent, that’s different than what life is like,” Tierney added. “Families will sometimes say, ‘My child isn’t like that when you’re not here’ or ‘They acted differently in the exam room, with you in person.”
While conducting online autism testing simply isn’t right for some children or conditions, assessing a child in their most familiar environment allows greater clarity on behaviors that may be deficient, Roots said.
But we knew at the very outset that people were going to want to make sure that this was rigorous and that we weren’t, essentially, pulling a fast one.
Dr. Thomas Frazier, chief medical officer of As You Are
While many deficient or troublesome behaviors are the result of leaving a child’s familiar environment, testing in the home removes undue environmental stressors that may confound testing. It’s also likely that whatever interruptions may be inevitable in the home may still be comparable to a clinic.
“Even in a clinic, there could be a nurse that bursts into the room at any moment,” Roost said, adding that many psychological or neuropsychological tests simply aren’t sensitive to a child’s environment.
The digital aspect opens space for additional innovation.
Bend Health is considering using artificial intelligence to accelerate diagnostic report writing. In traditional settings, a one- to three-month turnaround on these reports is typical.
Frazier said As You Are is exploring digital diagnostics to create objective assessment tools that are based around cheek-swab laboratory tests or webcam data to enhance the diagnostic process and better stratify patient needs.
“We can then use that data to make sure that the child is further tailored in their intervention strategy,” Frazier said.
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