What is developmental delay?
“Kylie has been diagnosed with global developmental delay”… “Freddie is meeting his developmental milestones”… “Callum has some educational delay”… “Malachi needs a family who can accept the uncertainty around his future development”… If you have been reading these children’s profiles in Be My Parent, you may well wonder what all these terms mean.
Perhaps the best place to start is with development itself, and what factors may influence it. ‘Development’ is a concept used to describe a child’s growth, maturation and progress in acquiring a complex set of skills and abilities, in several different areas, over time. These skills will be in the areas of gross motor(relating to large muscle groups, e.g. walking),fine motor (small muscle groups, e.g. picking things up), language and cognition (e.g. understanding or learning), or social or emotional.
A child is said to be ‘developmentally delayed’ when he or she is not progressing as expected in one or more of these areas. A child may also be delayed in all areas: this is called ‘global development delay’.
A sequence of stages tends to occur in each of the above areas, with one skill building on the previous one, until a series of steps leads to what is known as a ‘developmental milestone', for instance rolling over/sitting up/walking.
The rate at which children move through these steps is quite variable, and may be affected by many factors, such as the child’s genetic make-up, temperament, physical ability and environment. There are also some cultural and social variations in how children develop. For example, most children learn to walk at the same age in different cultures, whereas the age at which most children will be toilet trained or speak in two-word sentences depends more on social variables. Some skills can only be developed by children when they are physically ready, for instance rolling over, which requires sufficient muscle strength and tone.
Things can impact negatively on a child’s development at different stages, and for different reasons, including:
- genetic conditions – for instance, Down’s syndrome
- prenatal experiences, such as the mother misusing alcohol or drugs
- problems arising during pregnancy, such as premature birth
- childhood illness, such as meningitis or injury
- neglect or lack of stimulation
- difficulties with attachment to the primary carer.
Many children who are in the care system and who need a new adoptive or permanent foster family have experienced some level of neglect or lack of care while they were babies or young children, which may have had an impact on their development and caused some delay. For instance, a young baby who does not receive the normal level of stimulation and response from their main carers in play, interaction and physical contact will not develop what is regarded as a healthy attachment, and may be delayed in one or more areas of development.
Depending on its cause, a child’s developmental delay may be temporary, or it could be permanent. Genetic causes or foetal alcohol spectrum disorder (due to the birthmother’s misusing alcohol during pregnancy) will have lasting effects, although these may be improved by correct diagnosis and appropriate management. Delay due to lack of care or stimulation may be completely or significantly overcome by improving the child’s environment. For instance, when a child who has suffered neglect or lack of stimulation is placed with foster carers, and later on with his or her new permanent family, he or she can be helped to ‘catch up’ some of the delay they have experienced. Carers can recreate some of the stimulation and interaction they have missed out on in early life, and also specialist help, including physiotherapy, or speech and language therapy, can be really beneficial for some children.
When paediatricians complete an assessment of a child to determine whether they are developmentally delayed, they are looking at:
- what a child has mastered so far in each area of development
- whether the child has made similar progress in each area, or whether progress is uneven
- the rate of progression in each area of development
- whether a child seems to be following a normal trajectory.
It is also important to get an idea of when things went wrong in the child’s development, as this can be useful in predicting whether they can be helped to catch up, or if development will continue to be impaired.
It is not always possible to find a cause for the child’s delay. In some cases, symptoms of specific disabilities may not be easily recognisable in very young children, and a diagnosis can only be confirmed when the child is older. Although it may feel important to the child’s carers to have a full diagnosis, so they can better understand their child’s condition, in approximately half of the cases, no specific cause can be determined.
For children who come into the care system, detailed information may not always be available. For example, it may be known that the birth mother misused drugs and/or alcohol during the pregnancy, but details of what was used, how much, how often, and for how long, may not be known. Similarly, information about family history, including genetic conditions or learning difficulties, may be missing – especially if the child’s birth father is not known.
Sometimes multiple factors can have an impact: the birth mother may have used alcohol during pregnancy and these effects may have been compounded by lack of care and stimulation in early childhood. These things make it more difficult to predict how a child’s development will progress in future. It can require considerable ‘detective work’ by local authorities and their medical advisers, who will try to collate as much information as possible to gain a better understanding of a particular child, and the factors influencing his or her development at this point.
As an adopter or foster carer, it is important that you find out as much as you can from the agency about any child that interests you. If you are seriously considering a particular child, then meeting with the medical adviser who best knows the child can provide an opportunity to ask questions such as these:
- what areas are delayed, and by how much?
- if more than one area is delayed, are they delayed to the same degree?
- has there been a ‘catch up’ in development in the time the child has been in care?
- what are the rate and trajectory of development? Is it uneven or is the child making smooth progress at a steady rate?
- what are the possible causes?
- have any causes been ruled out, for instance by genetic or other testing?
- are there gaps in information, for example, prenatal or family history, or is it known whether the mother misused drugs or alcohol?
- what is known about the child’s experience of neglect, abuse and disrupted attachment, which might be affecting development?
- what can be done to assist development in delayed areas?
Answers to these questions should help you to better understand the nature of the developmental delay, gaps in the child’s health history, what is known about possible underlying factors, and learn more about what the future might hold for the child and their family. Being fully informed should help you to decide how much uncertainty about the child’s future development you can live with, and are prepared to accept.
And remember that, with the help of health professionals such as speech therapists and physiotherapists, with specialist support at school, and with active support and positive encouragement from their new families, children can be helped to thrive and develop to their full potential.
Isabelle Rameau – Editor, Be My Parent and Florence Merredew – Health Group Development Officer, BAAF
Originally published in the Be My Parent newspaper in September 2009.
This article is published with the kind permission of the people involved. You may download it for your own reference but if you wish to use it for any other purpose, please contact Be My Parent for authorisation: Be My Parent, BAAF, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Telephone: 020 7421 2666.
Last updated: 28 November 13