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!
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
‘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!