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Column: The pros and cons of labelling a child with a development delay

Having your child diagnosed with a developmental or learning disability is a life-changing decision for parents. Carol Coffey discusses some things concerned parents should consider ahead of an assessment.

Image: Alliance via Shutterstock

MUCH HAS BEEN written about the pros and cons of having your child diagnosed as having special needs but the dilemma facing parents considering such a life-changing decision cannot be overemphasised.

For many parents, the grief associated with having a child with special needs occurs the moment their child is born – such as is the case when their child is born with an obvious physical disability or a development disability such as Down syndrome. Indeed, the use of ultrasound scans and amniocentesis has resulted in many parents knowing of their child’s disability even before birth.

However, for some parents, the signs of development delay only become obvious when their child fails to reach developmental milestones such as crawling, understanding and using language, or developing the motor skills needed to manipulate their environment. When this occurs, some parents will feel an overwhelming desire to know exactly what is “wrong” with their child and will enter into the lengthy and frequently stressful assessment process. Some parents, however, will “play down” their child’s underdevelopment either through fear of what the outcome of an assessment would be or, as is often the case, because they hope that their child is simply developing at a slower rate than his or her peers.

So, what are the positive and negative associated with having your child assessed and when is a diagnosis of a disability appropriate?

Profound impact on quality of life

The positive aspects of having your child diagnosed with a special educational need is that such a diagnosis will enable clinicians to decide on specific early interventions which have been proven to have a profound impact on the quality of life for children at risk and their families. Early intervention therapies include speech and language therapy, occupational therapy, physiotherapy or behavioural therapy.

If your child is already in school and his or her difficulty is related to poor educational attainment, the results of an assessment should result in enabling the school to develop education plans which are individualised to meet the child’s learning needs. However, an assessment of the child’s difficulties should only occur when the school have tried in-school strategies – such as providing the child with a differentiated curriculum and learning support. Only when these measures have failed to result in adequate progress should an assessment be considered.

Often though the difficulties relate to a child’s behaviour, and the parent must decide if the extent and frequency of the behaviour warrants investigation by a child psychiatrist or clinical psychologist. Such children are often diagnosed with conditions such as ADHD which usually presents before the age of six and should occur in two or more of the child’s life situations (home, school, clubs, etc).

The potential drawbacks of early diagnosis

Unfortunately, a diagnosis of ADHD is often being made when the child has been observed in only one environment such as school and this is usually the environment in which the behaviour is occurring. Indeed, many parents report that their child behaves in a socially acceptable manner at home and that the root of the behavioural issues in the school environment relate more to poor academic attainment and the resultant lack of self esteem that often follows in the form of “acting out”, particularly in younger children who do not have the emotional maturity to communicate their feelings.

Also of concern is the emerging culture where having ADHD is somewhat fashionable and can be used by ineffective or overwhelmed parents to excuse their child’s behaviour. Often too, parents provide their young child with too much information on their diagnosis which can lead to children feeling resigned to behaving in the way that others view as unacceptable. Thankfully, this occurs in only a small number of cases. While it is often useful to provide a child with information on their diagnosis, children should be taught that while they find some aspects of daily life difficult, that this does not mean that they cannot learn the skills needed to minimise the difficulties associated with their specific disability.

A child’s background can affect learning performance

Children from Travelling backgrounds are more likely to be diagnosed with mild learning disabilities or clinically significant behavioural problems and this is possibly due to poor school attendance or differing cultural norms relating to acceptable behaviour.

Non-national children, or children born in Ireland to non-English-speaking parents, often present with poor academic progress in the early school years and may be incorrectly diagnosed with learning or specific learning disabilities. This can be due to the challenge children face living in bilingual environments.

Another concern facing parents of children undergoing educational psychological assessments is the possibility that their child will under-perform on the day of their assessment due to external factors such as not getting adequate sleep or appropriate nutrition. Psychologists suggest that the scores should always be taken with caution and will reflect the child’s ability on that given day.

Diagnosis can bring a sense of relief

Some children, particularly adolescents diagnosed with Asperger’s syndrome, report feeling relieved that there is a reason why they feel the way they do. Receiving a label in these circumstances can actually result in a child’s self-esteem improving as they learn that they are not “odd” and that there are others out there who feel and act in a similar way to them.

In an ideal world, clinicians and schools could provide additional support to children following a “needs based” assessment which would identify the particular difficulties children are facing, and provide the specific supports to remediate those difficulties without resorting to labelling children. However, appears that in Ireland, where the “medical model” is still in effect, we are a long way off what is now seen internationally as best practice.

What to do if you have concerns

In the interim, each parent or guardian should decide what is in their child’s best interests by examining the advantages and disadvantages of their child being diagnosed with a special educational need. Where do you go for such an assessment?

If your child is under five and you have concerns about his or her development, talk to your community nurse who will direct you to the appropriate services. Alternatively, you may wish to discuss your concerns with your GP. Parents can also refer their child for an assessment of need through the Health Service Executive. Further information on this can be obtained by logging onto hse.ie where you can find contact information for your local assessment of need officer.

If your child is already attending school, it is likely that his or her class teacher has alerted you to issues relating to your child’s academic attainment, or perhaps behavioural or socialisation issues that may or not be occurring in the home. In this situation, ask the principal if your child could be referred to the National Educational Psychological Service (NEPS) for an assessment. The result of this assessment may require onward referral to other professional organisations but this would occur only with the consent of the parent.

Carol Coffey is a writer, living in County Wicklow. She has a degree in education and a Masters degree in behavioural disturbance. Carol is a teacher by profession and continues to work in the area of special education.  Carol has used her extensive background in disabilities to bring the world of special needs to the wider population through her writing. Her new book The Incredible Life Of Jonathan Doe is just out now and published by Poolbeg.

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Carol Coffey

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