National Autism Center at May Institute Announces Publication of Groundbreaking Guidebook for Families of Children with Profound Autism

RANDOLPH, Mass., May 12, 2025 /PRNewswire/ -- The National Autism Center at May Institute is excited to announce the publication of Profound Autism: A Parent's Guide, a first-of-its-kind resource dedicated to supporting families and caregivers of profoundly autistic children. This comprehensive guide, with a foreword by Judith Ursitti, Cofounder and President of the Profound Autism Alliance, addresses the unique and complex challenges faced by families navigating life with a profoundly autistic child. It offers evidence-based strategies to improve quality of life and foster greater independence.

While most existing resources and research are tailored to individuals with low to moderate support needs, Profound Autism: A Parent's Guide focuses on the estimated 27% of profoundly autistic individuals. These individuals require 24-hour lifelong care, have significant intellectual disabilities, and are non-verbal or minimally verbal. Until now, resources specifically designed for this population have been scarce.

"Profound autism presents unique and significant challenges for families," said Lauren C. Solotar, Ph.D., ABPP, President and CEO at May Institute. "This guide was created to fill a critical gap by providing realistic, evidence-based strategies that directly address the needs of profoundly autistic children and their caregivers. We are committed to ensuring that these individuals are not left out of the conversation or denied the resources they need to live as full and rich a life as possible."

The guidebook, written by experts at May Institute, is divided into two sections. "Targeted Interventions" provides actionable strategies for addressing common challenges. It includes guidance on developing communication skills, encouraging meaningful play and social interactions, understanding sensory differences, and how to reduce challenging behaviors, including self-injury and aggression. It also offers practical approaches to daily living skills such as toilet training and improving mealtime experiences and covers managing sleep-related issues and transitions.

The second section, "Family Matters," offers essential guidance for caregivers and family members. It includes strategies for managing caregiver stress, ensuring safety in the home and community, and choosing and collaborating with healthcare and educational providers. This section also explains the role of medications and how they may be used to support profoundly autistic children, providing families with a comprehensive overview of medical and therapeutic options available.

The importance of resources like this guide is underscored in the 2023 study published by the Centers for Disease Control and Prevention (CDC) in Public Health Reports. In addition to revealing that 26.7% of children diagnosed with autism spectrum disorder (ASD) have profound autism, the study also highlighted that profoundly autistic children are more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight, exhibit self-injurious behaviors, and have seizure disorders. The data emphasize the urgent need for tailored resources and specialized support systems for these families, a need that Profound Autism: A Parent's Guide aims to address.

Rooted in more than 70 years of expertise in the treatment of severe and profound autism, May Institute and the National Autism Center bring a wealth of clinical knowledge and real-world experience to this resource. The guide emphasizes person-centered, compassionate care and reflects the latest research and best practices in autism intervention.

The publication of this guide underscores May Institute's commitment to leading the field in research, training, and clinical care for profoundly autistic individuals. In addition to providing direct services, May Institute and its National Autism Center advocate for policies and practices that improve the lives of profoundly autistic individuals and their families.

The guidebook is now available to families, caregivers, and professionals seeking practical, research-based strategies to navigate the profound autism journey. For more information or to request a copy, visit nationalautismcenter.org.

About May Institute and the National Autism Center
May Institute is a nonprofit organization that is a national leader in providing educational, rehabilitative, and behavioral healthcare services to autistic individuals and individuals with other developmental disabilities. The National Autism Center at May Institute is dedicated to promoting best practices and offering resources for autistic individuals, their families, and the professionals who serve them. With a special focus on profound autism, the organization is committed to advancing research and providing compassionate, evidence-based care that enhances the quality of life across the lifespan.

Contact: Julia Burgess, M.S., M.B.A.
Sr. Director, Corporate Communications
781.437.1348 | [email protected]

SOURCE May Institute