Developmental delay: an ambiguous term in need of change
The term 'developmental delay' is ambiguous in the context of parental adaptation to a child with a developmental impairment. Problems with the use of this label have been previously highlighted by medical professionals due to concerns that the word 'delay' may lead parents to assume that their child will arrive at the desired developmental goal, eventually. This is most often not the case. The diagnostic process is difficult for families, as well as medical professionals imparting the news. However, families report lower satisfaction when information is withheld, the diagnosis and labels are ambiguous and the diagnostic process is unduly lengthy. Maximum information is important to enable adaptation and acceptance of the child and changed family identity. The ambiguity attached to the term 'developmental delay' may interfere with parental adjustment and needs to be changed. I am a parent to a 16 year old child with a severe intellectual disability and severe expressive language disorder, who, for the first 5 years was labelled with the interim diagnostic term 'global developmental delay' The aetiology of my daughter's disabilities remains unknown, although she has a few physical abnormalities that suggest early fetal development somehow went awry. Coming to terms with having a child with a disability was by far the hardest thing I've experienced. The pain feels unsurmountable, as does the guilt of having potentially done something wrong in pregnancy; of not being a safe incubator to enable my child to develop healthily. Whether the interim term was 'developmental delay' 'impairment' or 'disorder' was not going to change my pain, as I was experiencing appropriate grief: a response to loss of normality, the loss of my dream for the perfect family with 2.4 children, a dog and a house with a white picket fence. Eventually I reached acceptance and started to construct a new normal: to
Archives of Disease in Childhood