I write this article as a therapist, and as a parent, but I have not personally received a life changing diagnosis for my child. As such, I don’t pretend to know how emotionally tumultuous this journey might be, but hope to discuss the advantages and disadvantages of “labelling a (dis)ability” from my perspective.
During my time as a physiotherapist, I have had the privilege of working with families as they tackle seemingly unsurmountable hurdles, find strength they didn’t know they had, and develop emotional resiliency I can only begin to understand.
There are families cradling their perfect newborn, being told their child has cystic fibrosis and a challenging and potentially shortened life ahead of them.
There are families who have brought their once healthy child to the doctor for what they thought was a viral illness, only to find themselves looking down the barrel of a cancer diagnosis and a myriad of treatment decisions.
There are families who have attended appointment after appointment with their premature baby, diligently working on their development at home, to be blind-sided at the suggestion of a cerebral palsy diagnosis.
And then there are other families who just want a name, a definition, a potential solution or specialist or intervention for their child, an idea of what the future might hold.
When can a label be useful?
Labelling a condition provides a common language for engaging with medical professionals, the school system, friends and family. Conditions such as autism or cerebral palsy are well known to most support teachers, healthcare workers and large parts of the community, and simplify the sharing of information. Having a diagnosis can also help a family to find support from others with the same condition, with even rare syndromes and conditions often having an international support group or forum for discussion.
Having a diagnosis can be very helpful in accessing funding, early intervention and school support.
Knowing the underlying cause of a group of symptoms can be very helpful when looking at prognosis. Some conditions improve with age, others are likely to be permanent or may cause deterioration over time. Some conditions have excellent treatments available that can be commenced immediately. Knowledge can be power when it comes to making decisions.
A label enables your child to be grouped with others when looking at the evidence and research for certain medical and therapeutic interventions. This can open up options, and give you a good idea of what is likely to work and be a good use of time and money.
Knowing what you are dealing with can be big step forwards in accepting the unique strengths and talents of your child – turning the search for answers into an appreciation of the individuality and resiliency of this little person.
The ugly side of labelling
Each child is different and will follow their own unique path. Comparing them to the rest of their cohort can be misleading and upsetting. I frequently read online stories about a child that beat the odds, whose parents never gave up hope, who proved the medical profession wrong. These statements come from a simplification of prognosis, which is much more complicated that a percentage within a cohort. Put simply, even if 80% of children with that diagnosis never walk independently, your child’s strengths and areas of need are their own, and should be treated by the medical profession as such. They should be given every opportunity to reach their potential, and that potential will never be accurately represented by numbers or statistics.
Knowing potential future issues can lead to anxiety and hyper-vigilance. Knowing that a particular condition leads to a higher chance of childhood leukaemia, or life threatening infections, or seizures, is important information to have, but if it prevents your family for participating in life then it is doing more harm then good.
A diagnosis can be extremely confronting for families in the middle of a complicated grief journey. Using terms such as “severe visual impairment” or “spastic diplegia” or “syndrome”, and discussing the long term implications of these diagnoses, can be too much too soon for a family whose world may have just been turned upside down.
Labelling can be associated with assumptions and negative connotations both within the family and wider community. The general population often have a very limited understanding of the complex nature of disability, and this can lead to stereotyping and discrimination. A child is more than their diagnosis, and many feel a diagnostic label defines a child by their condition, rather than recognising them for the unique and complex individual they are.
Particularly in childhood, many conditions are quite rare, and knowing what the condition is does not mean that treatment decisions or prognosis will be any clearer. It can be extremely disappointing for a family to end a long journey looking for answers only to find a lot more unanswerable questions.
In short? Knowing the WHAT WHEN WHERE of your child’s condition can be very useful and powerful information – but it does not change WHO your child is, and will not necessarily provide the HOW and WHY answers you are looking for.