The science of understanding

BMJ Paediatrics Open · 2025

Towards an Agreed Approach to Investigate Children with Developmental Regression

A consensus study proposing structured clinical pathways for investigating children presenting with developmental regression.

Furley K, Hunter MF, Gawade G, Williams K and colleagues

Developmental Medicine & Child Neurology · 2023

Developmental Regression in Children: Current and Future Directions

A comprehensive review exploring causes, clinical definitions, and investigation strategies for developmental regression. 

Furley K, Mehra C, Kochel RP, Absoud M and colleagues

Developmental Medicine & Child Neurology · 2018

Childhood Disintegrative Disorder and Autism Spectrum Disorder: A Systematic Review

A systematic review examining childhood disintegrative disorder and its relationship to ASD.

Mehra C, Sil A, Hedderly T, Kyriakopoulos M, Baird G, Absoud M and colleagues

Journal of Autism and Developmental Disorders · 2022

Childhood Disintegrative Disorder (CDD): Symptomatology of the Norwegian Patient Population and Parents' Experiences of Patient Regression

A study of all known CDD families in Norway, gathering symptom patterns through questionnaires and interviews and describing how parents experience their child's regression.

Ellis MJ, Larsen K, Havighurst SS

Journal of Autism and Developmental Disorders · 2004

Brief Report: Parental Reporting of Regression in Children with Pervasive Developmental Disorders

A large case series comparing how often parents of children with autism, versus other developmental disorders, report a loss of previously acquired skills.

Siperstein R, Volkmar F

Journal of Developmental and Physical Disabilities · 2024

Social and Language Regression: Characteristics of Children with Autism Spectrum Disorder in a Community-Based Sample

A community sample of 675 preschoolers with autism, finding about a quarter experienced social and language regression and most regained those skills over time.

Reyes N, Soke GN, Wiggins L and colleagues

Journal of Autism and Developmental Disorders · 2008

A Case Study of Childhood Disintegrative Disorder Using Systematic Analysis of Family Home Movies

Researchers coded family home movies to objectively trace one child's development and the regression that began around 48 months.

Palomo R, Thompson M, Colombi C and colleagues

South African Journal of Psychiatry · 2014

Childhood Disintegrative Disorder Misdiagnosed as Childhood-Onset Schizophrenia

A case report of CDD first mistaken for childhood-onset schizophrenia and treated with antipsychotics, underlining the diagnostic and treatment risks in under-resourced settings.

Sawant NS, Parkar S, Kulkarni P

Molecular Autism · 2017

Neurogenetic Analysis of Childhood Disintegrative Disorder

A Yale-led study combining genetics, brain imaging, and eye tracking in children with CDD, searching for neurobiological features that set it apart from other forms of autism.

Gupta AR, Westphal A, Yang DYJ and colleagues

The Lancet Child & Adolescent Health · 2022

Social Determinants, Inequality, and Autism

A commentary on a major English schools study, examining how social and demographic factors shape who gets identified with autism, and the inequalities involved.

Absoud M · Comment, 6(12):832–833

Developmental Medicine & Child Neurology · 2019

Childhood Disintegrative Disorder and Autism Spectrum Disorder: A Systematic Review

The field's only systematic review of CDD, comparing it with autism and regressive autism and finding it both rarer and more severe.

Mehra C, Sil A, Hedderly T and colleagues

Cortex · 2023

Developmental Regression in Children: Current and Future Directions

A broad review of developmental regression across autism, CDD, Rett syndrome, and epileptic encephalopathies, including its impact on caregivers.

Furley K, Mehra C, Goin-Kochel RP and colleagues

BMJ Paediatrics Open · 2025

Towards an Agreed Approach to Investigate Children with Developmental Regression

A consensus paper proposing a shared clinical pathway for investigating children who present with developmental regression.

Furley K, Hunter MF, Gawade G and colleagues

Journal of Child Neurology · 2024

Disease Course and Response to Immunotherapy in Children with Childhood Disintegrative Disorder: A Retrospective Case Series

A Duke case series of children with CDD treated as possible autoimmune encephalitis, with mixed responses to immunotherapy.

Sullivan MI, Gupta MJ, Taylor KA and colleagues

Developmental Medicine & Child Neurology · 2019

Childhood Disintegrative Disorder: Part of the Autism Spectrum?

A commentary accompanying the Mehra review, weighing whether CDD is distinct enough from autism to stand on its own.

Rosman NP

Journal of Pediatric Neurosciences · 2012

Childhood Disintegrative Disorder

A single case report of a girl whose language and social skills regressed at age five, illustrating how rare the condition is.

Charan SH

International Journal of Case Reports and Images · 2018

Childhood Disintegrative Disorder: A Case Report

A case report of a boy whose language, social, and self-care skills regressed after age four and a half, following a measles infection and seizures, with partial improvement on medication.

Sultan S, Kanth TR

Research Program · Yale School of Medicine

Yale CDD Study

An ongoing research program studying the causes and biology of childhood disintegrative disorder and recruiting affected families to take part.

Contact: yale.cdd@yale.edu · Sign up: bit.ly/CDD2017Study

Research Program · RCPCH (BPSU)

BPSU Study for Childhood Disintegrative Disorder

A British Paediatric Surveillance Unit study working to identify and learn from new cases of childhood disintegrative disorder.

Royal College of Paediatrics and Child Health

Yale Medicine Magazine

A Catastrophe in the Brain

A feature on the researchers working to understand childhood disintegrative disorder and the families living with this sudden, rare regression.

The Transmitter · Viewpoint

In Defense of Childhood Disintegrative Disorder

An opinion piece arguing that CDD should remain a recognized diagnosis rather than be folded quietly into the autism spectrum.

The Transmitter

Rare Form of Regression

A feature on how the late, dramatic regression seen in CDD differs from typical autism, and why researchers want to keep studying it.

The Transmitter · Bernardo Pace

The Most Terrifying Childhood Condition You've Never Heard Of

A father's account of his daughter's sudden regression, written to raise awareness of this rare and frightening condition.

SILive · Bernardo Pace

A Single Dad's Devotion: Caring for a Disabled 24-Year-Old

A photo-led local feature on a father's daily life caring for his adult daughter with CDD.

Irish Times · 2022 · Victoria White

My Sunny Boy Suddenly Exploded with Anxiety and Violence

An Irish mother's first-person account of her son's sudden onset of anxiety, aggression and regression.

Toronto Star · Alexis Wilson

Mommy Will Help Me

Navigating Ontario's web of supports for children with autism and complex needs.

When Autism Strikes: Families Cope with Childhood Disintegrative Disorder

Family accounts and clinical perspectives on living with and coping with CDD.

Robert A. Catalano, MD (Ed.)

The Blessing of Autism: One Family's Journey Through Childhood Disintegrative Disorder

A family's first-person account of their journey through CDD.

E C Marquis

Book

When Snow Turns to Rain: One Family's Struggle to Solve the Riddle of Autism

A family's account of trying to understand and respond to their son's regression into autism.

Craig B. Schulze

Book

Life, Animated: A Story of Sidekicks, Heroes, and Autism

Journalist Ron Suskind's account of his son Owen, who lost speech around age three and slowly learned to communicate again through Disney films. A story of regressive autism, not CDD.

Ron Suskind · 2014

Reference Textbook · 2005

Handbook of Autism and Pervasive Developmental Disorders, 3rd Edition

The major two-volume academic reference on autism and related disorders. It includes a dedicated chapter, "Childhood Disintegrative Disorder" (Volkmar, Koenig & State), in Volume 1.

Volkmar FR, Paul R, Klin A, Cohen D (Eds.) · Wiley

The Transmitter · Spectrum Stories

Rewriting the Story of Regression in Autism

An audio story exploring how scientists are rethinking what regression in autism means.

Video Podcast · DMCN

Childhood Disintegrative Disorder and Autism Spectrum Disorder — Chirag Mehra

A video podcast in which Chirag Mehra discusses his systematic review comparing childhood disintegrative disorder with autism spectrum disorder.

Documentary · 2016, dir. Roger Ross Williams

Life, Animated

The Oscar-nominated film of Suskind's story, following Owen as a young adult and showing how Disney movies became his way into language and connection.