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Heller's Syndrome

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Understanding the condition

 

Heller’s syndrome is often referred to as 'Childhood Disintegration Disorder (CDD)', 'dementia infantalis', 'disintegrative psychosis' or 'social development regression'. It is a comparatively rare syndrome affecting 2 in every 100,000 children. However, Heller’s Syndrome can start anytime up to the age of 10.

A child who has developed Heller’s Syndrome will experience the loss of at least two of the following:

  • Language skills

  • Receptive language skills

  • Social skills & self-care skills

  • Control over bowel and bladder

  • Motor skills

The loss may be gradual but is usually over a 6-9-month period. A child who is developing Heller’s Syndrome may at first show changes in behaviour, such as anxiety, unprovoked anger, or agitation. Behavioural changes are usually followed by loss of communication, social, and motor skills. A child may start to withdraw into themselves, rejecting social interaction with both adults and other children. Some children may stop speaking or revert to single words. They often lose bowel or bladder control. They may perform repetitious activities and often have trouble moving from one activity to the next.

Associated conditions

 

A child who develops Heller’s Syndrome may also experience difficulties in one or more of the following:

  • Social interaction

  • Communication

  • Repetitive behaviour and interest patterns

Challenges faced by students

 
  • Persistent difficulties with social communication and social interaction

  • Restricted and repetitive patterns of behaviours, activities or interests