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AIBU?

To wonder why it is deemed acceptable to call a diagnosis "labelling"?

98 replies

JakeBullet · 10/02/2014 13:13

This is about a post in another thread (not a thread about a thread) where a poster wrote...

"I also believe that very few children have actual SN and think there's far too much labelling, and some children are just little shits".

As the parent of child who has been "labelled" (with autism, dyspraixa, dyslexia and ADHD) I find this all too prevalent attitude appalling.

My child is not "labelled", he has complex difficulties and challenges which he has to cope with every single day of his life. Just because they are not immediately visible does not mean they are not there.

His difficulties are not made any easier by those who doubt these diagnoses....from relatives to other parents to strangers in the street. None of whom have any medical training you understand....they just "know" it is "labelling" and that these conditions "don't really exist"

"ADHD means naughty child" (for example) just as "dyslexia" means "can't read", autism means "can't talk" and dyspraxia (if they have ever heard of it means "a bit clumsy".

My DS is thriving, he is thriving because in school they DO believe in his diagnoses and they support him.

He is thriving because a paediatrician prescribed medication when he was 8 years old because she was concerned he was not achieving his potential. Three months after starting medication he could finally read.

He is thriving because I meet his needs for sensory issues and support him.

He is thriving because there are still thankfully many who DON'T believe all the crap they read about children being "labelled" and DO understand.

For those of you who DON'T get this ....shame on you. You have much still to learn. Perhaps start with the National Autistic Society and then move outwards to the surrounding conditions.

OP posts:
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Groovee · 10/02/2014 13:15

Ironically I remember coming up a colleague and a friend who is around 15 years older than me. She was telling a mum not to allow them to "label" her child and I retorted with "Without a diagnosis, how will he receive the correct help, to support him in school life and beyond?"

I do think our age gap showed a difference as in my career we've never called it Labelling, yet her being old school had.

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MothratheMighty · 10/02/2014 13:18

It's not a label, it's a key to unlocking a lot of the difficulties a child is facing and working out the most effective way to support them.
No one sees a dx of epilepsy, eczema or diabetes as labelling, and I think that accurate dx is far to important and useful to mind the squaking and squarking of the ignorant.

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MothratheMighty · 10/02/2014 13:19

Groovee, I'm old too! Mid fifties.
Sometimes an ignoramous is just that.

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AliceinWinterWonderland · 10/02/2014 13:21

I imagine there is somewhat the thought behind it that if this is down to parenting (such as ADHD being bad behaviour) then people figure it won't happen to them. They won't "let" their children behave that way. Hmm

Obviously that's wrong, but there you go.

Unfortunately, there are still people roaming about that think that all children with "ADHD" are simply naughty children or suffer from bad parenting, and that all children with autism are mutely rocking in a corner somewhere.

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ComposHat · 10/02/2014 13:21

I think the difficulty and confusion comes when parents self diagnose ADHD, etc. using Dr Google. Because the parents thought their might be money in it for them or they wanted off the hook for their shite parenting.

I saw it a lot when working with social services. In those cases yhe kids were usually just ill behaved little sods who had been appallingly badly parented. Quite often there had been an assessment and they didn't fit the criteria for diagnosis, yet the parents remained adamant they had ADHD.

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OneInEight · 10/02/2014 13:23

Before diagnosis my boys had a label of "obnoxious child". Personally I prefer the AS label as it helps to get them the support that they need.

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MothratheMighty · 10/02/2014 13:24

Which is why a formal dx, with the paperwork is necessary.
Otherwise I could claim to be anything from an astronaut to a caterpillar and insist it was true. Proof from a reputable and recognised source.

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Starballbunny · 10/02/2014 13:26

Because like DD1 I'm dyslexic and label is far easier to spell than diagnosis Grin

And I don't give a flying fuck about PC language or whether people say my dyslexic DD1 or DD1 who has dyslexia, so long as that toad Gove doesn't loose her her extra time in exams!

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sydlexic · 10/02/2014 13:26

The pediatrician has advised me not to label my DS with aspergers. She agrees he fits the criteria but as he is extremely high functioning and very successful academically the label will only harm his prospects.

He is going to receive individual therapies for various issues he has without a full diagnosis.

I thought this was just an indication of people's prejudices.

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SomewhatSilly · 10/02/2014 13:31

Well said.

I am very fearful for my beautiful son's future with prejudice like this still acceptable :(.

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dottyspotty2 · 10/02/2014 13:37

MothratheMighty not always easy to get the dx though is it took us until DS was 17.7 to get full DX despite us knowing since he was tiny that he was autistic many professionals knew he was autistic as well but the one that mattered was adamant that he only had ADHD and LD's, her answer was medication which tbh he needed and still takes. Funnily enough he went to a specialist school for children with ASD from the age of 12 and he was full time in SNU from 6 though as he could not cope even part time in MS.

Until the professionals that matter start doing their job we are going to have this massive problem of parents being blamed for seemingly badly behaved children when in reality they have special needs.

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ReallyTired · 10/02/2014 13:39

I don't think that there is an issue with labels, but an issue with people's perception of labels. If the label of autism gets a child extra help then great, however if teachers use such a label as an excuse for low expectations then there is a problem.

In the UK its pretty hard to get a diagnosis for autism, ADHD or dyspraxia. A team of specialists makes a diagnosis and its not done one one appointment. In the UK a child will see about six health professionals on several occassions before a diagnosis like autism or ADHD is made.

When ds was two years and eight months we had a stupid nursery nurse trying to make out that ds had autism. We had a community paediatrian, SLT and audiologist assess him and she found out the real problem - severe glue ear.

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Floggingmolly · 10/02/2014 13:41

My ds1 went to Nursery with a child who's mum admitted the Senco had pointed out the probability of him having ASD, but wasn't planning to accept the referral because "being labelled will hold him back" Sad

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WireCat · 10/02/2014 13:44

Who said that? Are they qualified to say that?

Just been at the school with the educations psychologist who is dealing with the statement for my son who is ASD/global delay among other things.

It isn't a label. It is a diagnosis.

People who think it's an excuse for bad behaviour or whatever really piss me off. The clearly don't live with anyone who has a diagnosis.

God, this has really really fucked me off. Angry

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LadyInDisguise · 10/02/2014 13:49

I think the post you are referring to is awful, just as all the preconceived ideas about children 'just' being naughty and needing a harder is parenting method but getting an unwarranted diagnosis.

However I do are where the issue with labelling is. When you put a diagnosis on a child or an adult, most people expect them to fit a certain image. So a child with ASD is a non talking child just as someone with migraines will get a bad headache from time to time.
The problem is that with these diagnosis of ASD, ADHD etc there isn't ONE type of child like this. So suddenly you get a child with a diagnosis that doesnt fit the image. Add to that lots of misconceptions as to what ASD etc is... And you have the best recipe for misunderstanding and jugement.

So just as much as a diagnosis would mean getting the right sort if help (if you can get any at all...), it can also mean potentially stopping someone from developing themselves to their best abilities because people might think 'oh he has AS/ADHDwhatever condition, so he won't be able to do that'.

Fir me that's what labelling means. Putting people in a box and restricting their potential for development. Diagnosis for me is knowledge, the possibility to get the right help and support so that the person can develop their abilities to the best.
Unfortunately diagnosis only stays a diagnosis for the parents and a few enlightened people. Fir all the other it's a label.

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Tailtwister · 10/02/2014 13:52

A lot of people are completely ignorant though aren't they? They spout off these ill informed phrases because they've heard them somewhere, but they don't actually know what they're talking about.

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CailinDana · 10/02/2014 13:52

The idea of "labelling" comes from psychology but the people you refer to un your OP clearly don't understand the concept at all. Basically a label is something we use psychologically to categorise the world around us. So in simple terms "table" is a label and when you hear it you expect to see a flat surface on four legs.
Diagnoses are positive and necessary for the child. Where they become problematic is when they become a "label" that causes people to categorise them in a certain way that restricts or disadvantages the child. It's for this reason that in general it is considered very important to say "a child with autism" rather than "an autistic child." "A child with autism" labels the child as a first and foremost a child like his/her peers. The autism is given secondary importance as it does not define the child. In contrast "an autistic child"immediately categorises the child and makes them different and "other."
I did a study that showed that if you describe the exact same behaviour for two children but label one child as having special needs (without saying what those needs are) people will generally view the behaviour of the child with sn differently. That mightjust indicate compassion but worryingly it also showed that people believed the child with sn should be allowed to give up on a difficult task in spite of making very little effort and were less likely to encourage a child with sn.

The overall theory behind it is that labels have power and it's important to be conscious of how we label people and the effect those labels have.

That's essentially what your pediatrician was saying sydlexic - that an AS label would do your ds more harm than good so it was best to do without it.

It all ties in with the idea that "disability" is simply a social construct. Our world is built for a "normal" white male and anything outside that is seen as different and in need of accommodation. That automatically puts anyone not in the nwm category at a disadvantage and labelling contributes to that by signposting the ways in which they don't "fit".

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LadyInDisguise · 10/02/2014 13:53

It also means that some adults for example will but want to try and get a diagnosis if AS as they see if will be more detrimental (reactions at work for example) due to the labeling than any help (which they won't be getting as fully functional adults).
That's also a reason why I would not want to publicize my dc dx when he will finely get it.

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ouryve · 10/02/2014 13:58

Ignorance and prejudice. And, sadly, for some parents, a fair amount of Chronic Ostrich Syndrome. It's the same mindset that thinks that DS2 would soon start talking properly if we didn't give him what he needs (ie food and water) without him asking for it. It's the same mindset that thinks my eldest actually needs sedation to control his hyperactivity and impulsive behaviour and that he wouldn't have a screaming meltdown in the middle of the street if he feared a good hiding.

Someone very wisely pointed out that a diagnosis should be thought of as a signpost, rather than a label. Thanks to these signposts, we have some idea of the direction we need to go in for my boys to grow up to be as independent as possible.

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ouryve · 10/02/2014 14:03

It all ties in with the idea that "disability" is simply a social construct. Our world is built for a "normal" white male and anything outside that is seen as different and in need of accommodation. That automatically puts anyone not in the nwm category at a disadvantage and labelling contributes to that by signposting the ways in which they don't "fit".

Cailin - is not "labelling" DS2 as non-verbal and, thus, ignoring his needs going to magically make him talk, then?

Not giving someone who is struggling to function in society, as it is, a diagnosis of AS is not going to fix their problems, that they already have. DS1 doesn't have ADHD because he was given a diagnosis of ADHD, he was given a diagnosis of ADHD because he has ADHD.

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nestornot · 10/02/2014 14:04

My DS is v high functioning, academically advanced, etc. I was happy for him to have the dx of aspergers because (as other posters say) it's a key to unlock the support he needs. His school would be supportive regardless of his dx - they were the ones who referred him and were already putting things in place before the dx - but when he moves up to high school it's going to be a hell of a lot easier to get the support he needs with a dx. It's a convenient shorthand.

I see aspergers as a broad description of a constellation of behaviours, some of which are incredibly positive. If it's a label, it's sewn into ds's pants, not branded on his forehead, IYSWIM. I don't tell anyone who doesn't need to know.

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TalkieToaster · 10/02/2014 14:05

Having an ASD diagnosis for our DS has been very positive as it's unlocked much needed support. I'm in two minds whether to 'broadcast' it when he starts school, purely down to the narrow-minded misconceptions of people who think of it as negative and labelling. It will be obvious he has additional needs, as he is nearly four but talks on the level of a two year old, or younger. The school are aware as they'll be applying for funding for a one-to-one helper for him once his place is confirmed in April, but I'm not sure it's something I want to talk about at the school gates. I want him to make friends and for people to see him as a person first. It's so hard. Sad

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SingMoreWhenYoureWinning · 10/02/2014 14:07

Unfortunately, from my experience, experts HAVE at times been...over enthusiastic...about trying to paste a well-recognised label to my dc.

Ds1 had speech delay as a child...problems with pronounciation. The first speech therapist acted with what I can only describe as a determination to 'label' him as autistic/on the spectrum at least. He had NO other signs of autism at age 3 other than delayed speech. When he incorrectly managed to identify a 'happy' face in a book as a 'sad' face when she was assessing him, I thought she was going to piss her pants in excitement. I had to vociferously refuse further assessments and was chased for months. He's now 6, and still with no symptoms of autism.

Ds2 has, at 3 years old had one chest infection requiring antibiotics and a ventolin inhaler (which was barely used). I've taken him to the Doctors twice more in winter with a very stubborn cold/cough where nothing was found infection-wise. He is consistently referred to by our Doctor as 'asthmatic'. He is NOT fucking asthmatic. He has no other symptoms...he's like any other 3 year old who picks up a virus in winter.

I know these are just two individual examples...but it's not always the case that Doctors/professionals are loathe to diagnose/label anything. If it was up to the experts, I'd have one autistic and one asthmatic son. In reality, I have neither.

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MatryoshkaDoll · 10/02/2014 14:10

This reply has been deleted

Message withdrawn at poster's request.

CailinDana · 10/02/2014 14:12

Ouryve - no it's not saying the problems themselves don't exist, it's saying the concept of disability is flawed because it implies that unless you're a "normal" white male then you are an inconvenience who needs accommodation. The way this theory would view it is that instead of people with disabilities being expected to adjust to fit in to the nwm model, society should (over time) adjust to ensure everyone can participate to the best of their ability. This has already happened to a certain extent with requirements for all new buildings to be wheelchair accessible but attitudes are lagging behind.

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