Why “labels” absolutely do matter.

I went for an appointment with kiddo to see the specialist physio over the summer. I’ve been observing signs of dyspraxia for some time, and kiddo’s injury rate has been escalating in a chronic fashion. While I was there I had the luxury of a one to one adult conversation with her about possible causes and she came out with what many of us would believe to be a near perfect definition of dyspraxia. She said “(Kiddo’s) poor fine and gross motor skills, as well as his inability to coordinate his limbs, is caused by a developmental disorder and the inability to connect signals from his brain to physical movement”. Now for those who are not clear on what dyspraxia actually is, here is the definition from the Dyspraxia Foundation:

“Dyspraxia, a form of developmental coordination disorder (DCD) is a common disorder affecting fine and/or gross motor coordination in children and adults. It may also affect speech. DCD is a lifelong condition, formally recognised by international organisations including the World Health Organisation.”

So naturally I said “It sounds as though you are describing Dyspraxia there?”. Her reply has stuck with me ever since. She simply said, “Ooooo Mrs P****r that’s a very big label you’ve just mentioned there” and her face filled with concern. So I clarified, “is it not dyspraxia we are discussing then?”. There was no reply. Because that’s exactly what we were discussing.

Nowadays labels and diagnosis are seen as an extremely negative thing. In the U.K., children are not even formally diagnosed with Sensory Processing Disorder anymore. The parent is simply handed a 30 page document listing all their child’s difficulties and challenges across all the sensory areas. It would seem that the NHS and companies such as Virgin Care would like to concentrate on the child’s needs, rather than just a label or name given to their situation.

It’s a beautiful idea in theory, and holds many positives. But unfortunately it holds a huge number of negatives and causes major problems for families all over the country. Labels are necessary for many reasons. And here’s why…

1. No label, no financial support. The Department for Work and Pensions hold the key to the doorway for every family who required Disability Living Allowance or Personal Independence Payments. They are supposed to provide financial support to families on the basis of need. But there is a major problem with this. The staff employed to read and allocate these benefits are not medical professionals. In fact, they are given just 8 hours training on how to decide who to allocate money to. How are they trained to do this? By searching for keywords. What do those keywords surround? Labels and diagnosis terms such as “autism”, “dyspraxia” and “dyslexia”. So unless you have been on this training yourself, you are an expert in writing these applications to include the desired words or you are a mind reader, those labels are fairly essential in getting the financial support you require.

2. Labels and diagnosis are a very quick and powerful way of explaining to friends and family that your struggles are real. Picture the following…

You’re in the school playground taking your child to school and another Mum approaches you and says “I’ve heard you’ve been having a rough time, did the doctor find out if there was nothing not quite right?”. This is how you reply without using any labels. “Well we have discovered that he is over responsive to light and sound, he is under responsive to proprioception and his brain is unable to send signals to the rest of his body, indicating a developmental delay in his fine and gross motor skills. His frontal lobes appear to be insufficiently processing any communication and he is unable to relate to his peers in an appropriate manner. Instead he is displaying traits of someone who struggles to relate socially to others and cannot communicate his needs and wants.” I’m already exhausted from writing that. And you lost that other Mum at “light and sound”. Plus, your child is now late for school. So I use labels and simply say, “yes we have concerns about autism, sensory processing disorder and dyspraxia”. If that parent genuinely wants to know more, they will ask or find out for themselves. But in the mean time, you are wasting valuable minutes where you could be having your third cup of coffee of the day…

3. Labels are “proof” that your child’s difficulties exist. Whether we like it or not, when the Peadeatrcian or specialist puts pen to paper and you see the words “xxx has been given a diagnosis of autism etc” it gives you legitimacy. No longer are you a strain on the system simply searching for a problem that doesn’t exist. You are officially deserving of people’s time. You are no longer a burden, you have made it to the big leagues. I don’t like this any more than you do. But that’s the way it is.

4. You were right along long Mum and Dad. A label is the final destination for many. The ultimate “I told you so” for so many conflicted families. But most importantly it’s closure of a chapter many cannot wait to cross the finishing line for. It wasn’t your parenting, the diet your child had or your approach to disclipine. It wasn’t your own mental health problem causing an illusion. You were right. And here’s the letter to prove it. It’s over. Now to start counselling…

5. Your right to special access is denied. Companies do not have a slither of the time that DWP have to sit and read about all your child’s needs. And let’s face it, DWP have pretty much no time as it is. So when you know you are entitled to discounts, free access, travel assistance etc, rather than fighting your corner yet again, how simple would it be to hand over a letter of diagnosis? Please, can one thing just be made simple?

Now I don’t want you to think I’m “label mad”. When kiddo was diagnosed with autism, I didn’t even cry. It didn’t change who he was. It didn’t change anything about him at all. He was still my kiddo. What I did do was cry on the lead up to the final conclusion that a diagnosis would be refused. And then I would have to face all the above problems all over again. We were some of the lucky ones, kiddo was diagnosed.

So when I was told my son had classic signs and symptoms of dyspraxia, but they didn’t want to plaster a label on him, I explained that if he had symptoms of a formally diagnosed condition, he would be getting that diagnosis. Because quite frankly I spend enough of my time fighting the health system, without fighting the rest of the world too.

Thanks for reading,

Danielle 

7 thoughts on “Why “labels” absolutely do matter.

  1. Great read! I feel the same, I don’t know why ‘label’ has such negative connotations. Can you imagine if we went around saying “oh your pancreas doesn’t work properly, you will need to take insulin and avoid donuts” so am I diabetic? “Oooh that’s a big label!” Why the difference!? X

    Liked by 2 people

  2. Great post, I totally agree! Points 3 and 4 resonate especially with me. It’s so difficult when ‘friends’ express their disapproval of giving a child a label – they just don’t get it… As you say, having a diagnosis doesn’t change anything about my child, it changes my ability to support him, and his ability to learn how to support himself in the future. Why wouldn’t I want that? Love the comment using diabetes as a comparison too. I’m really enjoying reading your posts, thank you.

    Liked by 1 person

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