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

Martin John Ellis; Kenneth Larsen; Sophie Seychelle Havighurst

doi:10.1007/s10803-021-05023-7

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

J Autism Dev Disord. 2022 Apr;52(4):1495-1506. doi: 10.1007/s10803-021-05023-7. Epub 2021 May 2.

Authors

Martin John Ellis¹, Kenneth Larsen², Sophie Seychelle Havighurst^{3

4}

Affiliations

¹ University of Oslo, Oslo, Norway. mellis1917@hotmail.co.uk.
² Oslo University Hospital, Oslo, Norway.
³ University of Oslo, Oslo, Norway.
⁴ University of Melbourne, Melbourne, Australia.

Abstract

Childhood Disintegrative Disorder (CDD) is a rare and little researched developmental disorder characterised by regression in language and social skills after a period of seemingly normal development until at least the age of 2 years. The study contacted all parents of CDD patients in Norway to assess patient symptomatology and parents' experiences of regression via questionnaire or interview. There were 12 participants. Symptomatology was in-line with previous studies, with universal regression in language and social skills and onset predominantly at 2-4 years. Regression was connected to feelings of 'loss' and uncertainty over the prognosis for CDD patients. The study supported CDD diagnostic criteria and showed that CDD patient regression has profound implications for parental well-being.

Keywords: Autism; CDD; Childhood Disintegrative Disorder; Heller Syndrome; Regression.

MeSH terms

Autism Spectrum Disorder*
Child
Child Development Disorders, Pervasive* / diagnosis
Child, Preschool
Humans
Language
Norway
Parents