One of the things I value most in medicine is our ability to ask a seemingly simple question: Is the treatment working?
In many areas of medicine, we have objective measures that help us answer it. When caring for a child with diabetes, we can follow hemoglobin A1C. When managing hypertension, we monitor blood pressure. Those measurements do not replace the physician’s judgment or the patient’s experience. They give us another piece of information, one that can help us recognize progress, identify concerns, and decide whether our approach needs to change. In autism care, answering that same question can be more complicated.
We rely heavily, and appropriately, on clinical expertise, caregiver observations, individualized treatment goals, and assessments of behavior and development. Each provides important information about a child. Yet our ability to consistently and objectively measure developmental change over time has remained limited.
That is why I paid particular attention to the new State Medicaid & Children’s Health Insurance Applied Behavior Analysis (ABA) Toolkit released by the Centers for Medicare & Medicaid Services (CMS) in August. CMS describes the toolkit as guidance for states rather than a new federal mandate, but I believe it offers an important window into where expectations around quality and accountability in autism services may be heading. What caught my attention was not simply the emphasis on documenting treatment. It was the emphasis on measuring what happens as a result of treatment.
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We need to know more than whether services were delivered
As clinicians, we are accustomed to documenting what we do: the services provided, goals addressed, interventions used, and hours of treatment. But those details alone cannot tell us whether a child is making meaningful progress. A child may receive the appropriate number of treatment hours and have a carefully constructed treatment plan, but I still want to know: What has changed for this child? Are developmental skills improving? Is the trajectory moving in the direction we hoped? Does the treatment plan still make sense based on what we are observing? These questions become even more important when treatment continues for months or years.
Across health care, there has been a gradual shift from simply measuring the delivery of services toward understanding outcomes and quality. CMS already uses standardized quality measures across Medicaid and the Children’s Health Insurance Program (CHIP) to evaluate aspects of care and health outcomes. Medicaid autism care is part of that larger health care environment, and I believe we should expect the conversation about outcomes to become increasingly important.
Objective data do not diminish clinical judgment
Whenever we talk about standardized or objective measurements in autism care, I think it is important to clarify what that means. No single number can capture a child. I would never want a measurement tool to replace what a clinician sees during an evaluation, what a board-certified behavior analyst (BCBA) observes during treatment, or what a parent notices at home. A parent may describe a new interaction at breakfast that no clinician would otherwise see. A therapist may recognize a subtle change in engagement that matters tremendously for that particular child. Those observations are part of good care. But they also come from different perspectives. That is precisely why standardized measurement can be valuable. It gives us another source of evidence that can be interpreted alongside clinical observations, caregiver input, and individualized goals.
I think of it in much the same way that I think about objective measures elsewhere in medicine. The laboratory result does not treat a patient. A blood-pressure reading does not determine a treatment plan on its own. The clinician interprets that information within the context of the whole person. Developmental measurement should work the same way.
Measurement becomes most useful when it changes what we do
For me, the most important question is not whether we can collect more data. We already collect enormous amounts of information about health care. The question is whether the information helps us make better decisions. If I can measure a child’s development consistently over time, I may be better able to recognize whether progress is occurring as expected. A BCBA may be able to combine those findings with behavioral data and direct observation to determine whether treatment priorities should change. Families may have another way to understand their child’s development beyond individual therapy goals.
At an organizational level, consistent measurement may reveal patterns that are difficult to recognize one patient at a time. Are children responding differently to certain approaches? Are there areas where progress appears to plateau? Are we seeing similar patterns across clinicians or locations? Those are clinical questions, not simply administrative ones. And they illustrate why I believe the conversation about outcomes should ultimately remain centered on improving care rather than satisfying documentation requirements.
Technology can help, but it should remain in the right role
I am particularly interested in this issue because my own work has focused on objective developmental measurement. As chief medical officer at EarliPoint Health, I work with technology that uses eye tracking to generate standardized measures related to social visual engagement, language comprehension, and nonverbal learning in young children at risk for autism. That experience has reinforced something I feel strongly about: Technology is most useful when it gives clinicians better information, not when it attempts to replace it. A measurement becomes meaningful when someone understands the child, interprets the information appropriately, and decides what to do with it. The future I hope to see is therefore not one in which clinicians surrender judgment to technology. It is one in which we have better tools available to inform that judgment.
The real beneficiary should be the child
It is easy for conversations about Medicaid policy, reauthorization, quality measures, and payment models to become technical very quickly. But let’s try to bring the discussion back to the child and family. Families invest enormous amounts of time, energy, and hope in autism care. They deserve meaningful information about whether that care is helping their child. Clinicians deserve reliable information that helps them make treatment decisions. And when payers ask whether continued treatment is medically necessary, those conversations should be informed by meaningful evidence of a child’s needs and progress, not simply by how many hours of therapy have been delivered.
CMS’s new ABA toolkit does not answer every question about how outcomes should be measured, nor should it. Measurement science in autism continues to develop. But I see its emphasis on measurable goals, reassessment, and progress as part of an important evolution in the field. We should continue asking the question medicine has always asked: Is our treatment making a meaningful difference? The opportunity now is to become better at answering it.
Cheryl D. Tierney, MD, MPH, is chief medical officer at EarliPoint Health.
EarliPoint Health develops the EarliPoint System, FDA-cleared eye-tracking technology that helps clinicians diagnose and assess autism spectrum disorder in young children.
The EarliPoint System device is indicated for use as a tool to aid qualified clinicians in the diagnosis and assessment of Autism Spectrum Disorder (ASD) in children ages 16 months through 95 months (7 years) who are at risk based on concerns identified by a parent, caregiver, or healthcare provider (Not for direct consumer purchase; clinician use only).
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