If you have a child whose development is different from the ‘norm’, it is easy to get wrapped up in the quest for a label. A name for why your child is different. A shared understanding between you, educators and the big wide world. A prescribed plan of action for how to handle situations effectively.
I understand the desire for a label. My son has one. Or should I say ‘had’ one.
Prior to his year at preschool he was diagnosed with Sensory Processing Disorder (SPD). Seeking a shared understanding with staff about how his body was wired, this was a logical step to support his transition.
Behind the label though, I knew that the root cause of his sensory sensitivities were retained primitive reflexes. It was why he was triggered by loud noises and busy environments. It was why he needed rules and routines in black and white, rather than grey. It was why he needed a high level of movement each day in order to feel grounded.
Yet despite this knowledge, I still went through the process of getting a label. And I don’t regret it for a second. It achieved the intended purpose of aiding my son’s transition to preschool. It bought us time.
However, what I’ve realised since, is that I delved into the process somewhat differently to many other parents. I saw the label as a temporary measure. A snapshot of my son’s development at a particular moment in time. Not something that we’d have to manage for the rest of his life. Just in the here and now.
I anticipated that as we integrated more of the primitive reflexes, his sensory challenges and extreme need for movement would lessen. I knew that we would reach a stage where he outgrew his label. And he has.
While this process was a positive one for my family, labels can certainly have their limitations. Here are four that all parents and educators need to be aware of.
1. The Label Becomes a Life Sentence
If your child has Down Syndrome, Cerebral Palsy or an intellectual disability, yes, these are lifelong conditions. But Sensory Processing Disorder, Auditory Processing Disorder, Dyslexia, Dyscalculia, Dyspraxia, Speech and Language Delay, Global Developmental Delay and in some cases, even Autism Spectrum Disorder…they aren’t always a life sentence. A label should not limit who a child becomes or what they can achieve, not even for a second.
2. The Label Does Not Fit
Many children don’t fit the specific box of a single developmental condition. A few items may be ticked from label A, a few from label B and a few from label C. But still we persist with searching for a name that sticks. We squish our youngsters into a box where they don’t truly belong. And then instead of helping the child to become more understood, the label does the opposite.
3. The Label Has a Bias
Back in the day when Asperger’s Syndrome and Autism were two distinct developmental disorders and I was studying my Masters Degree in Special Education, I remember reading an article from a Psychologist who talked about the labeling process. While children with a higher IQ and no history of language delay officially warranted a diagnosis of Asperger’s Syndrome, she reported that many children with Autism also received this label. Why? Because practitioners regularly used the term that the family were the most receptive to. And while I love this family centered approach, in the long run it didn’t serve the child. Not one bit.
Lately I’ve also noticed a concerning trend from professionals who are encouraging parents to seek out a diagnosis of Autism Spectrum Disorder. Even when the parents don’t feel it’s a match for their child’s developmental challenges. Even when the GP or Pediatrician themselves doesn’t either. The reason? Because if successful, the child would attract funding and support. Bias has a lot to answer for.
4. The Label That’s Missing
Neuro-Developmental Delay isn’t a label that most of you have heard before. It’s a term used to describe an individual who has a cluster of retained primitive reflexes. The perfect label in fact, for most of the children who don’t readily squeeze into the other boxes on offer.
They’re the children who are out of sync with their development but who fall through the cracks. No profession seems to dig deeply enough to get to the bottom of their challenges, to ascribe it a name or to share a plan of action that works.
This is my territory. I work in the grey zone, supporting the families who have looked everywhere else and can’t find help. Supporting the educators who are left scratching their heads despite wanting to do more.
To learn more about Neuro-Developmental Delay, read my free eBook about the Primitive Reflexes. This will explain why your child, grandchild, friend or student may be struggling with their learning, attention, behaviour, coordination, or emotional wellbeing.
Before I sign off…
I want to clarify that I am not against labelling. But if you go down this path, make sure it’s serving a clear purpose. Make sure that you’re being authentic in the challenges your child is having. And be open minded to other modalities that may be able to support you.
Most importantly, never believe that your child is their label. Every child is a unique human being with unique needs and qualities. A label is just that, a label.