Global developmental delay: A global misnomer

Abstract

‘Jake is a 15-year-old boy, with cerebral palsy and global developmental delay’.

As paediatricians, one of our key tasks is to assess a child's development. We monitor the domains of gross motor, fine motor, speech and language (expressive and receptive), as well as social skills and abilities. We ensure vision and hearing are normal. We decide whether the child's development is on track. We consider the child in the context of their environment. We explore for ‘red flags’ such as regression or major delayed milestones, which are a trigger aetiological investigations and intervention. We do not over-react to a mild delay in one or even two domains but recognise the potential significance. Timely follow up of the child is important as we know that, whilst development is usually predictable, it can be uneven. Engaging with our allied health colleagues who can provide support and assessment can add value at a time of uncertainty. Sometimes, watchful waiting is the key.

The landscape changes drastically for a child with a definite delay across two domains (either monitored over time or demonstrating a significant delay). The involvement of two domains yields a label of ‘global developmental delay’ – prompting formal recommendations for early childhood intervention. We consider investigations for reversible conditions that may impact on development. Focal neurology or upper motor neuron signs prompt us to consider neuroimaging. Aetiological investigations are also an important part of the assessment. We then consider whether there is an evolving disability (such as intellectual disability) or a neurodevelopmental disorder (such as autism spectrum disorder). The patterns of delay and social skills attained may provide important clues. More significant delays may be clearer at an early age but milder symptoms may take more time to be apparent.¹

The Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition Text Revision states that the term global developmental delay should be reserved for children under 5 years of age.¹ It should only utilised if a more suitable disorder cannot be reliably assigned. Most notably, after age five, the diagnosis must be replaced. One option is to assess and investigate for intellectual disability (mild, moderate, severe or profound).² Even in the absence of reliable testing, when significant developmental concerns persist beyond 5 years of age the label of global developmental delay should be replaced with ‘intellectual disability’ (or unspecified intellectual developmental disorder).¹

Ideally, functional descriptors that define the child's capacity and specifically reflect the impacted developmental domains should be reported. A lifelong diagnosis of intellectual disability should not just be assumed. If assessments cannot be completed, the diagnosis should be considered temporary and, over time, re-assessment should be attempted.¹ This should always be coupled with clinical evaluation and assessments of adaptive functioning.

We believe persisting with the term global developmental delay in an older child is unhelpful for three reasons. First, the word ‘delay’ implies that there will be a ‘catch-up’, which can leave families with false hope or unrealistic expectations from therapy and interventions. It also insinuates that the paediatrician has not provided the family and caregivers clarification about the child's lifelong impairment, resulting in important missed opportunities to support and counsel families about their child's needs.

Second, retaining the term global developmental delay ‘flattens’ the child to a single dimension and does not allow consideration of their strengths or capacity. An appreciation of a child's cognitive abilities and neurodevelopmental disorders guides decision-making and educational goals. An understanding of a child's function – motor, cognitive and especially communication ability and style – is an essential part of developing a care plan that facilitates authentic participation and emotional wellbeing.

Lastly, global developmental delay is a term reserved for young children only. Using it in children or adults with disability could be considered disrespectful and suggests infantilisation. Note, though, that infantilisation should not be confused with the autonomous choice an individual with a disability may make to pursue their interests that are not in keeping with their age, such as loving ‘The Wiggles™’ at age 15. This is their right and we respect their autonomy.³

Let's use the correct terminology.