Learning Disability Today
Supporting professionals working in learning disability and autism services

Is it time to drop the term global development delay?

When a child experiences delays in two or more significant milestones compared to peers of the same age they will often be diagnosed with global development delay.

Global development delay affects 1–3% of the population of children under five years of age, making it one of the most common conditions presenting in paediatric clinics. However, the number of areas and the extent to which a child is delayed can vary significantly and some children do ‘catch up’ with the right support in place.

Yet for a significant number of children, global development delay is an early sign of a neurodevelopmental condition such as autism, learning disability, foetal alcohol spectrum disorder or cerebral palsy.

Although, healthcare professionals will conduct further investigations in children under five from neuroimaging to genetic testing, some children will not receive a formal diagnosis beyond global development delay.

This raises the question of how long the term should be used for and whether it would be more appropriate to be replaced with “developmental disability” rather than “developmental delay”.

Global development delay or development disability?

According to the Royal Australian College of Physicians, global development delay can be a misleading and imprecise diagnostic term as it is not necessarily associated with prognosis, in particular cognitive impairment.

In a position paper, it said that children to whom the term is applied are, for the most part, not affected in all domains and it offers no descriptors as to the domains of delay. Thus some experts believe that the term global developmental delay is inherently limited.

Many of the children are not simply delayed, which would imply catch-up; rather, they are impaired. It suggests that the term “developmental disability” may be a more useful term.

Global development delay was also debated at our recent conference, Refocusing Health and Wellbeing for People with a Learning Disability. Delegates discussed why some older children and young adults in the UK who meet the criteria for a learning disability diagnosis still have global development delay on their clinical letters, which gives no clear consensus on whether cognitive skills are affected.

Another issue is that global development ‘delay’ implies to parents, caregivers, and therapists that the condition is temporary and prognosis is favourable. However, it is likely that if the child fails to catch up, disappointment, anger, and frustration may ensue. Some delegates felt that this false hope was potentially cruel to families as in practice, most children with developmental delays continue to show developmental deficits into late childhood and even adulthood. The more delays in multiple development domains, the more likely it is that the child will have a learning disability.

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Delegates also felt that an earlier learning disability diagnosis would enable families to access special education needs and disability (SEND) support and social care more effectively as well as become part of a supportive community.

In addition, it would help ensure children are placed on the learning disability register at the appropriate time and receive annual health checks, which are important in identifying unmet health needs in people with learning disabilities.

A consensus on terminology is needed

Confusion already exists between the terms learning disability and intellectual disability, so consensus on changing the terminology in the early years of life would also allow better communication between professionals.

According to the American Association on Intellectual and Developmental Disabilities, intellectual disability is characterised by significant limitations in intellectual functioning (reasoning, learning, problem solving) and adaptive behaviour (conceptual, social and practical skills) that originates before the age of 18 years.

Whereas in the UK, the Department of Health uses the term learning disability instead of intellectual disability and defines it as the presence of impaired intelligence with impaired social functioning, which started before adulthood and has a lasting effect on development.

To create further misunderstanding across the international community, the term learning disability in the US is used to describe what is known as learning difficulties in the UK.  Learning difficulties generally do not affect general intelligence, whereas a learning disability is linked to an overall cognitive impairment.

Regardless of terminology, early intervention is of clear benefit to children with developmental disabilities. There is evidence that providing support and services for infants and young children with early developmental impairments and their families can alter the child’s longer term developmental trajectory, and reduce the risk of secondary health and psychosocial complications.

 

Box 1. What is global development delay?

Global developmental delay means that a child has not reached two or more milestones in all of the five areas of development:

  • Cognitive – relating to a child’s ability to learn and solve problems.
  • Social and emotional – relating to a child’s ability to interact with others as well as self-control and self-help skills.
  • Speech and language – the ability to use and understand language and all forms of communication.
  • Fine motor skills – control of fingers and use of small objects such as cutlery, pens etc
  • Gross motor skills – control of large muscles resulting in the ability to walk, sit etc.

 

author avatar
Alison Bloomer
Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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