Why we banned the word ‘Label’

I have seen many things today and over the last few months, which only go to show why using the word ‘label’ is very detrimental to anyone with a hidden disability.

First of all there is the term ‘label’ itself

I have been asked

“Why are you trying to label your daughter?”

And heard about an incident where someone had said

“Autism is just a label”

And read a comment on a daily mail article

‘PDA is another label for bad parenting’

I will answer all of these….
First… Would a mother who thought their child had diabetes not get them checked for fear of ‘labelling’ them? I don’t think so.
Would a mother of a child who had a wheezing cough which kept recurring refrain from going to the GP in case her child was ‘labelled’ asthmatic? Hmm, nope.

So why is it any different for our kids with developmental/neurological problems?
I encountered a post on a parenting website that said
is it worth labelling my 6 year old son with ASD
I would say yes, because, believe it or not ASD doesnt only affect the child’s parent’s views on him! What about the child? When he asks why he is different, or why he finds certain things so hard. He needs to understand himself. I have heard of children who didn’t know what was going on with themselves calling themselves “losers” or “freaks”.

I am not seeking a label for my child… I am trying to gain a better understanding of her, get her a diagnosis which she can learn to understand when the time comes, and for those directly involved in her care to actually understand her and make her life easier. It can’t be easy having your brain wired a different way to others and them being expected to do as they do. It must be confusing and this is why so many children with ASDs have low self esteem, because they think that the problem is them. It isn’t, not at all. The problem is with the world that refuses to understand them and treat them as the individuals they are.

Autism is certainly not just a label, millions of people on the spectrum and their loved ones, medical and educational professionals will tell you that.

PDA as a label for bad parenting. Hmmm, I am a member of the PDA contact group and other online social PDA groups and I can tell you not one of those parents strike me as a bad parent. They are all loving and caring parents who only want the best for their children. They sacrifice their own happiness and well being for their children’s every day and in some cases in every way.
I am lucky enough to have met a mum and dad of a soon to be 5 year old boy with a diagnosis of PDA. They are kind, considerate and only want the best for their son. They have learnt a whole new style of parenting and taken the hard knocks and dealt with the fallouts. Their son is a very cool little man. He has his own mind and although he is obviously anxious around myself and dinky, his character shines through. PDA is another autism spectrum disorder. One that gets the least amount of recognition from professionals, and is a constant uphill battle. It is anything but a label for bad parenting, in fact no bad parent could ever look after a PDA kid…. They would eat them alive!

Next up, ASD coming under one ‘label’

Again I have seen and partaken in some very frank discussions regarding the DSM V ‘s revisions and the collapsing of the ASD’s into one name.

While I can see why they did it.
( the term aspergers was starting to mean less support or ‘not autistic enough’ for services )
The problem is they will then start using useless terms like ‘high functioning’ ASD. I have just read an article by musings of an aspie (which is under ‘blogs I follow’) about the high/low functioning.
Definitely have a read!
In terms of dinky I’d assume if she didn’t get a diagnosis of PDA and was diagnosed ASD, she would probably be considered high functioning. Which is wonderful for her grandparents or those that don’t really Understand. To them it means ‘not that autistic’. The problem is autistic is autistic. The same with Dinky.
Just because she is able to read well for her age doesn’t mean she is ‘high functioning’, it means she is a good reader, she has strengths. Which I celebrate everyday. However, she has some serious problems. Her expressive language difficulties mean it is difficult for her to get out what she needs to get out. When she feels she can’t make her anger or frustration understood she lashed out. Her anxiety means that unless she is fully involved in learning and doesnt feel like it is a demand or high expectation, she just won’t do it.
Yesterday I realised that retention is also a problem. When dinky was 3 she could name all the planets and their colours. She knew which one was the biggest the smallest, which were gas and which were rock. Yesterday she could only name earth, mars, and Saturn.
What if this happens more and more? Would they still deem her ‘high functioning’ because she appears to be extremely bright?
Also what about her? When she is older, would the term ‘high functioning’ mean she felt that she shouldn’t have the difficulties she does?

Aside from the ridiculous idea of indicators or specifiers (which is only according to the one giving the diagnosis and doesn’t take into account the changes in the child or adult which may alter the level of ‘functioning’), it is also like trying to say all people with an ASD are the same.
It’s like having 100 people with the diagnosis depression and saying “treat them all”. There is not one thing that will work for all of them.
PDA strategies are markedly different to traditional ASD ones.
So to not have the diagnosis available means that services involved in the care of those with PDA. Will be confused, and instead of finding out what will work, they will automatically start questioning the diagnosis.
“But they are sociable”, “talk a lot”, “give eye contact”. Sure because only Kanner’s autism is the ‘correct’ form of autism for us all to work off. Also let us not forget that Asperger originally said that there were no women with his condition.

There is a saying in the autism community….
If you have met one person with autism, then you have met one person with autism.

We need the diagnosis to give a proper and accurate signpost.

The term ‘label’ also implies that it is somehow ‘not real’ or ‘less’ than a physical disability. The same as the term ‘functioning’ gives the impression of less autistic. The person still has autism that is the thing to take from it.

Another thing that I have learnt in my tumble into the autism universe,
That there seems to be a culture of “outautisming” or ‘autism spectrum top trumps’.
The facts are clear. Each of us with a child on the spectrum has a tougher time than those whose children do not have special or additional needs.
I won’t for a minute try and understand the anguish a parent faces because at 6 their son hasn’t said they loved them.
The same as I hope some other parents don’t think that just because dinky wants friends, can make eye contact and talk for Britain, that my life is easy. It may be easier than theirs, but we all have our own battles. The point is autism spectrum disorder is what is stopping our children from being able to interact with the world the way NT children do, and the world doesn’t make sense to them.

The term label has been banned from one PDA group. I say ban it from all groups, meetings, Ect where the difficulty is hidden/developmental/neurological in nature!

None of us are trying to label their children…. One thing that will probably stick with me for a long time in the case of dinky…

Who on earth would want to ‘label’ their child pathologically demand avoidant?

Not me! However if the boot fits!

small edit

It was pointed out by one of the parents that…

Labels are also varied and not just diagnostic ones… I’ve added some of her examples…

It is true….My dinky has had lots of labels given to her by ignorant people

‘Naughty’
‘Spoilt brat’
‘Little S**t’
‘Rude’
‘Freak’
‘Odd’
‘Weird’… And the list goes on… Oh and these have all been said by adults!

And my parenting has come under fire…

‘Awful parenting’, ‘lack of discipline’, ‘lack of rules’ ‘pandered parenting’

I’d rather my child diagnosed (not labelled) PDA than allowing any of the other ‘labels’ to stick!

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11 thoughts on “Why we banned the word ‘Label’

  1. Pingback: Autism and Summer Things To Do :) | Sarah's Voice

  2. Having a name for something can be quite a relief. One isn’t labeling the person, one is labeling a part of them. It gives a point of reference and a first step.

    Very helpful analogy with depression. I manage mine with therapy and anti-depressants. And yes, some depressives have lectured me about using medication. So depressives share a mood disorder and sometimes distorted thinking, but there’s no consensus on treatment!

    • Viviene,
      I agree with the general idea of ‘labelling’ a part of a person not the person.
      The problem I have is the attitude in which people use the term when it comes to getting a diagnosis for a child.
      They say “why are you labelling them”.
      It is not a label it is a diagnosis.
      Diagnosis gives the step forward.
      Without meaning to sound dramatic, but one would not call cancer a label. Or diabetes. Or a multitude of physical illnesses for that matter.
      Those with the illnesses are given diagnosis, so why do people assume to call getting a diagnosis for an autistic child a label?
      It makes it sound like it is not as bad as it is. Like it is a small inconvienience or not really there. Or they have the label of autism to protect them.

      This is wrong on so many levels. If you have been following my blog dinky finds a lot of things very difficult and as a parent I hate seeing her struggling. For then someone to diminish her struggle by calling getting a diagnosis a label, it feels like her struggles still will not be taken into account.

      I’m sorry to hear you suffer from depression.
      Please take this as a demonstration of my point and not a critique…
      Do you feel confortable with people saying depression is a label? Would you still feel the same way if you were depressed as a child and someone stopped your parents from getting that diagnosis for fear of labelling you?

      It’s a tough one.

  3. Fantastically written piece and perfect analogy/example of depression. I have been asked too many times by Bean’s school why I am intent on “labelling my daughter”. Like you say, who would choose to label their child with a condition? They basically are indicating that I have Munchausen’s I sometimes feel!

    A label doesn’t have to be a negative. A label on an item of food is an informative description on what the food contains and how best to prepare and cook it – useful beyond measure!!

    • Dinky’s school haven’t dared to ask that question, I’m sure they have thought about it.
      The problem with that statement “labelling your daughter” is it can imply 2 things.
      1. You have munchausens by proxy (which is doubtful)
      2. That it wouldn’t matter if she got a diagnosis or not.

      Which is why I dislike the way the term is used.

      Food labels are great…. For food (and as a starter for those who think we are labelling our kids…)

      However people have diagnosis. That is what is meant to lead to support, understanding and strategies.
      The medical term diagnosis gives more emphasis on the medical side ie, not a minor issue.

      I will happily label food or other inanimate objects, but I will not label my child, I will ask for her to receive a diagnosis which indicates her difficulties.

      • I hope you didn’t take my comment the wrong way? I completely agree with everything you write in this piece, I am frustrated that professionals who should know better insinuate that I am simply seeking to label my child as if for fun and/or I am a parent that cannot control her child rather than listening to me when I discuss her ‘label’ if it must be called that, diagnosis is what it is, that offers insight into her condition that they could learn from if they were inclined to broaden their experience horizons! I’m glad school have not raised this label issue with you as try have done with me; I most certainly am ‘anxious mum’ to them and I wonder if they do ponder about Munchausen’s by proxy!!!!

      • I don’t think I took it the wrong way, I hope my reply didn’t come across wrong… I was trying to use what the school did to reinforce why the term ‘label’ is so wrong, and why it should be diagnosis.

        Of course you are an anxious mum, you have a child with an ASD and the school are too busy reaching for the ‘L’ word, or blame parenting, than look at your child’s needs.

        Thanks for replying both times… I think it is important to have these discussions..

        🙂

  4. I think you’re post is brilliant too!
    I always talk to school about my sons ” diagnosis”I’ve not even entertained the term label for all the reasons you state, and so far no one has dared use the term to me. As you know DM ,I’ve had a Diagnosis since before school began….and yet i am sure they ” label” me both ” anxious mum” and ” MM”. 🙂

    • We’ve had a diagnosis since before school started and it feels like coming with this already on the table put noses out of joint or something. The Head even mentioned to me about a mother of one of the nursery children who was “obsessed with labelling her daughter”, little did she know I was that mother about whom she was bitching about. Unprofessional beyond measure and we’ve been up against it since when I feel they should be bending over backwards to work with us now!!

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