Guest blog by Lauren Roberts, Coordinator SWAN UK (Syndromes Without a Name).
A controversial new book caught the headlines last week claiming that dyslexia is a meaningless label which holds teachers and parents back from helping children. The Dyslexia Debate claims that testing for dyslexia is merely a waste of time and resources.
While the book is talking specifically about Dyslexia, it raises a more general question that families are often asked – why do you want to label your child? The social model of disability says it is society that disables people, not their impairments. This is very true, but aside from the emotional need for a diagnosis that many parent seek, there are also some very real, practical reasons why diagnosis is important.
1. A diagnosis may offer a prognosis
People are often surprised to learn that around 50 per cent of children currently undergoing genetic testing through the NHS may never get a firm diagnosis. Without a diagnosis families have no sense of what the future might hold. They have no developmental charts to refer to, no idea whether their child will walk or talk, or even what their life expectancy might be. For parents of children with very complex medical needs, the first few months and years can feel like an endless search for answers.
2. A diagnosis opens doors
Although support should be based on assessed need, the experience of many families is that without a diagnosis it can be difficult to access support. Without a diagnosis it can be difficult to get people to take your child’s needs seriously – even if they have very obvious difficulties. You have nothing to write in the box on forms that asks for diagnosis and, in a time of budget cuts, a lack of diagnosis can be used as an excuse to deny support.
3. A diagnosis helps predict recurrence
Without a diagnosis it is impossible to test or predict the likelihood of the condition recurring. There is no way to know if future children or grandchildren will be affected – or whether siblings may pass the condition on to their own children.
4. A diagnosis may help direct treatment
Without a diagnosis it can be difficult to know what is the best course of treatment. Some children respond unusually to drugs and have undergone numerous surgical procedures without success.
5. Without a diagnosis you often feel like you don’t fit in
Families of children with undiagnosed genetic conditions often feel they don’t belong with other networks or groups that offer support to families of disabled children. They dread having not having an answer for the ‘what’s wrong with them’ question.
SWAN UK (Syndromes without a Name) is an initiative of Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. On Friday 25 April, we will be leading the UK celebrations of Undiagnosed Children’s Day. We’d love you to support us!
Find out more about our It’s a Mystery Day and how you can get involved.
Scope’s Face 2 Face schemes offer emotional and practical support and operate across the UK. Any parent of a disabled child may use their local scheme, even if your child hasn’t been diagnosed.