SPACES Webinar Series Recap: Understanding Catatonia in Autism
By Meagan Hutchinson
Phelan-McDermid Syndrome Foundation proudly co-sponsored the six-part “Supporting People with Autism and Catatonia through Education and Support (SPACES)” webinar series. Catatonia is often under-recognized, and coming together to understand it better is key to creating meaningful change. We are committed to raising awareness and understanding about this important topic within our community. This powerful six-part series focused on key topics surrounding catatonia in autism. In this blog post, we break down some of the lessons we learned from each session of the series.
Stories of Catatonia
In the first part of this series, Dr. Arthur Westover (University of Texas Southwestern Medical Center) provided an overview of catatonia and offered guidance on how to talk with a child’s doctor about their symptoms and treatment options. Dr. Tesi Kohlenberg (Developmental-Behavioral Pediatrics and Child Psychiatry, Boston) discussed hallmark changes seen in catatonia, such as alterations in movement, bodily functions, and behavior, and shared real-life examples and video footage of patients before and after treatment. Additionally, Lezley Pisone offered a powerful account of her family’s personal experience with catatonia and the treatment journey.
What is Catatonia?
In the second part of this series, Dr. Lee Wachtel (Kennedy Krieger Institute) described the history of catatonia, features of catatonia, and outlined treatment and management of the condition. She described the categories of catatonia, including psychiatric, neurological, medical, and drug-related (e.g., anti-psychotics).
How is Catatonia Diagnosed?
The third webinar of the series featured Dr. Isaac Baldwin (Vanderbilt University), who discussed the various methods used to diagnose catatonia, including clinical rating scales and the lorazepam challenge test. He emphasized the importance of an accurate diagnosis and highlighted how families can assist by providing valuable information, such as home videos and written developmental histories. Dr. Baldwin also explained how the lorazepam challenge, along with other clinical and laboratory tests, can help identify the underlying causes of catatonia.
Pharmacological Treatments
The fourth webinar in the series featured Dr. Kelli Dominick (Cincinnati Children’s Hospital Medical Center), who reviewed several classes of medications that may be effective in treating catatonia. These included benzodiazepines (e.g., lorazepam), NMDA receptor antagonists (e.g., memantine, amantadine), and anti-seizure medications (e.g., valproic acid). She also addressed the potential risks of antipsychotic medications, which can sometimes exacerbate catatonia. Dr. Aaron Besterman (University of California San Diego) also presented, focusing on the emerging role of the immune system in catatonia and the use of immunomodulatory treatments (e.g., IVIg), particularly in individuals with autism. Both Dr. Dominick and Dr. Besterman emphasized the need for further research on effective treatments for catatonia.
ECT and Catatonia
The fifth session of the series featured Dr. Amy Lutz (University of Pennsylvania) and Dr. Joshua Smith (Vanderbilt University). Dr. Lutz shared her personal experience navigating catatonia in her son and their journey toward pursuing electroconvulsive therapy (ECT) as a treatment option. Dr. Smith provided an overview of the history and effectiveness of ECT, explained how the procedure works, including its role in increasing brain inhibition, and shared examples of how ECT has benefited patients. He also addressed common barriers to accessing ECT and the challenges families may face in seeking this treatment.
Family Support and Resources
The final session of the series featured Belinda Phillips (The Catatonia Foundation) and Carol Alread (University of Washington), who shared valuable resources and information for families and professionals. Belinda provided guidance on how to advocate for a child with catatonia, navigate complex systems, and access the current resources available through The Catatonia Foundation. Carol emphasized the importance of early identification and treatment of catatonia and introduced attendees to a new two-page summary tool designed to support the recognition of catatonia in individuals with autism.
We hope this series helped you feel more informed and empowered, and we thank the Autism Science Foundation, the National Council on Severe Autism, and Autism Speaks for hosting this important series.
Check out the link to watch the sessions: https://www.youtube.com/@CatatoniaandSevereandChallengi/videos
Check out the link to the two-page summary of Catatonia in Autism: https://www.youtube.com/@CatatoniaandSevereandChallengi/posts
Check out the resources available at The Catatonia Foundation: https://www.thecatatoniafoundation.org/
Check out the resources available at Autism Science Foundation: https://autismsciencefoundation.org/
Check out the resources available at the National Council on Severe Autism: https://www.ncsautism.org/
Check out the resources available at Autism Speaks: https://www.autismspeaks.org/