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Childhood Disintegrative Disorder

Childhood Disintegrative Disorder

Childhood Disintegrative Disorder (CDD) is a rare developmental disorder which also goes by the terms Heller’s Syndrome, Dementia Infantilis, and Disintegrative Psychosis. Children with CDD grow and learn normally for at least the first two years of their lives, but after this period they begin to regress, losing any progress made in their mental and social development, hence the term ‘disintegrative’. This loss normally happens at three or four years old, but can occur any time up to the age of ten.

This loss of skills often occurs rapidly over a six to nine month period and may begin with behavioural changes such as agitation and anxiety followed by diminishing motor and communication skills. Children may use single words or stop speaking altogether. They can often lose control of their bowel and bladder functions and become withdrawn, rejecting social interaction.

It is clear that CDD is a complex disorder that affects many different areas of development. As such it is grouped with autism and other Pervasive Developmental Disorders (PDDs). Like with autism, a child with CDD may prefer a very set routine and repetitive activities and treatment is similar. There is an emphasis on early, intensive and behaviour-based intervention, such as ABA. A number of therapies could be incorporated, depending on the individual’s needs, such as speech, occupational, social and sensory.

As a lifelong disability, children with CDD will remain dependent on full-time care and it is normal for families to feel strained emotionally and physically. However, excellent support groups exist whose members include other families with children with CDD alongside treatment specialists.

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Did you know?

It has been documented that around 20% of children diagnosed with the CDD reacquire the ability to speak in sentences with the use of ABA.