Clinician training on catatonia in autism.

ECHO Autism: Catatonia in Autism. A five-session series training clinicians, May and June 2026.

Far too many families in our community have reached out exasperated, unable to find a doctor who understands catatonia. Catatonia in autism gets missed for months, sometimes years. Families cannot get care from clinicians who have never been trained to recognize it.

So NCSA invested in the workforce. With the Autism Science Foundation, we co-funded a five-session Project ECHO on Catatonia in Autism, hosted by Nationwide Children's Hospital: specialist training for the clinicians families actually see, so that a family walking into a clinic or an emergency department has a better chance of meeting someone who knows what they are looking at.

How Project ECHO works

Project ECHO moves knowledge, not people. A hub of specialists trains clinicians case by case over Zoom, and participating clinicians earn continuing education credit as they learn. The model is validated professional training: the expertise concentrated at a handful of academic centers reaches the community clinicians families actually see.

The series

• Identification and clinical features: features, diagnostic reasoning, assessment
• First-line medication: gold-standard treatment, monitoring, second-line options
• ECT, Part 1: acute and maintenance paradigms, individualization
• ECT, Part 2: history, autism-specific applications, access barriers
• Supporting patients and families: systemic barriers, advocacy, family wellbeing

Each session, a participating clinician brought a real patient case to the national hub team and received written recommendations. Across the five cases, ECT was in use, under consideration, or the recommended next step every single time.

Expert hub team presenters

Ann Neumeyer, MD, Harvard Medical School · Nadine Schwartz, MD, Nationwide Children's Hospital · Lee Wachtel, MD, Kennedy Krieger Institute · Minju Hwang, DO, University of Florida · Joshua Smith, MD, Vanderbilt University Medical Center · Kelli Dominick, MD, PhD, Cincinnati Children's Hospital · Parent partners Belinda Phillips, Amy Lutz, PhD, and Alicia Brewer Curran

Who was trained

Seventy-two clinicians registered, from 17 states plus Nepal and India. Fifty-two took part actively from 36 learning sites, 281 attendances across the five sessions. Nurses and nurse practitioners formed the largest group, followed by behavioral and mental health providers and physicians in psychiatry, developmental pediatrics, and neurology. Behavior analysts, social workers, and child life specialists were also at the table. Most practice in academic medical centers.

What clinicians knew coming in

Seven in ten clinicians who enrolled had never received formal training in catatonia. Yet more than four in ten had already cared for patients who received ECT, and nearly half see autism and catatonia cases every year. Clinicians are already meeting catatonia. They had never been trained to recognize it.

Source: pre-series survey of 63 registrants (referral difficulty, 57 respondents), ECHO Autism: Catatonia in Autism program evaluation report, Nationwide Children's Hospital, August 2026.

What changed

Confidence rose in every competency measured, on a five-point scale:

• Identifying catatonia in autism: 2.6 before, 3.9 after
• Knowing when and where to refer for ECT: 2.6 before, 3.8 after
• Supporting families and accessing resources: 3.2 before, 4.3 after

Source: pre-series survey (57 respondents) and post-series survey (16 respondents), program evaluation report, August 2026. Group-level comparison, not a matched sample.

Families on the hub team

Seventy percent of clinicians strongly agreed that a parent or caregiver belongs on the ECHO expert hub team, and 73 percent strongly agreed they actively seek feedback from patients and families. Three parent partners served on the hub team and led the final session on supporting patients and families.

Source: pre-series survey of 63 registrants, program evaluation report, August 2026.

What clinicians still need

A single series does not close the gap. After completing the series, 44 percent of respondents still wanted support with diagnosis and assessment, and 38 percent with medication treatment. Participants asked for a companion series on diagnosis, guidance on medication management for clinicians without ECT access, and clear referral pathways: who to call first, and how to move a referral past skeptical colleagues.

“They are from centers that have very good access to ECT. The majority of us don’t have access to that. And not just don’t have access; we have barriers in providers that do not believe in what we’re talking about.” Gary Stobbe, MD, Neurology, University of Washington, participant interview session, July 2026

Session recordings were not made available. This was professional training for clinicians, not a public program; its product is a better-prepared workforce. For information about future ECHO cohorts, contact info@ncsautism.org.

Hosted by Nationwide Children's Hospital Project ECHO. Co-funded by the National Council on Severe Autism and the Autism Science Foundation. Figures from the ECHO Autism: Catatonia in Autism program evaluation report, Nationwide Children's Hospital, August 2026.

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