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Autism diagnosis = Label dislike or not?

(20 Posts)
Doordye Wed 27-Apr-16 20:57:15

I really dislike it when I hear and read of Autism diagnosis being referred to as a label. Lots of other parents seem not to mind and I have heard numerous professionals call it a label.

Does it bother you? Or am I just been picky

Memeto3boys Wed 27-Apr-16 21:00:14

I hate it too.
I also hate the fact that you get the tone of professionals we dont like to label them. I am not asking you to label them i want younto help them!!

zzzzz Wed 27-Apr-16 22:07:42

Twat-talk as far as I'm concerned. Right up there with "does he have a special gift" hmm

zzzzz Wed 27-Apr-16 22:08:22

Oh and "normal" as something aspirational

Ineedmorepatience Thu 28-Apr-16 09:31:55

I always pull people up who say its a label!

Yes zzzzz imagine striving your whole life to reach the giddy heights of "Normal"! Fuck that I will stick with unique thanks smile

sh77 Thu 28-Apr-16 09:59:45

"Is he like Rainman and a genius at maths?" I cried from laughing. Well you have to, right?

LogicalThinking Thu 28-Apr-16 10:08:36

I have never understood the notion of it being a label.
If your child was born with one leg, would anyone in their right mind suggest that it would be better if we just carried on regardless and there was no need to mention it because that would only draw attention to it and people would treat him differently because they were told about it.
It's just bollocks. People will notice. The child will notice. The difficulties will still be there and the help will still be needed.
When a child has a diagnosable condition then it needs to be diagnosed so that they can get whatever help is appropriate.
There are no other conditions that people would describe as a label.
'Oh, so you decided to label your child as a diabetic? We're not sure that would help ours'

Ineedmorepatience Thu 28-Apr-16 21:32:13

Well said logic!

enterthedragon Sun 01-May-16 09:14:23

A label is something you put on your luggage before going abroad.
It is what you put on a jar of home made jam/pickles.
It is what you put on your tub/bag of freshly blanched vegetables before putting them in the freezer.
It is the name label that you sew/ iron into your child's clothes at the beginning of the academic year.
It is what you put on a parcel before taking it to the post office.

The sooner professionals stop using the term 'label' the better. A medically diagnosable condition is a diagnosis never a label.

Doordye Mon 02-May-16 00:33:18

Thank you, for your replies. I totally agree. I've been in so many meetings lately where professionals have made comments that have just left me aghast. When I'm the only parent in the room it's like pushing sand uphill or however the saying goes.

The latest ones I've had, Not all children need a diagnosis. IMO No parent is going to be looking at ASD unless their child is having significant difficulties therefore if they meet the criteria for a diagnosis then it should be given. That is my firm belief. None of this guff of "if needs can be met"

I don't know what it is about golden, but I've heard two different professionals compare a diagnosis to A) a golden egg B) a golden ticket. I'm getting so frustrated with it.

Doordye Mon 02-May-16 00:36:46

Just to be clear I'm not saying you should need a diagnosis to get services, needs met but that just because they're receiving services and support that they don't need a diagnosis.

guyshahar Wed 04-May-16 10:28:53

Our son was diagnosed with autism aged 2 (after a surreal process with the NHS - but that's another story). Now he is 6 and a half, and we have only recently let him know that he has an autism - and we have told him so lightly that he almost didn't notice. It was more as a building block for a conversation when he is a little older.

Why? Exactly because we didn't want the label to define him. There is so much more to his personality than being "autistic". We have been very fortunate with the treatments we have found for him, and have been able to help him rediscover so much of his personality that had been lost when he regressed into autism that giving him that label would undermine that as he would define himself by the label rather than by what else he finds within himself.

There will come a time when knowing more about autism will help him to understand differences between himself and other children, and that time might be quite soon (depending on how quickly he becomes more self-aware in social situations), which is why we are now laying the foundations for giving him this information (plus I have just started a blog about autism, which means he may be more exposed to the idea more quickly). But up to now, it would only have been confusing. We feel it is much better to wait until the information s actually useful to him in terms of helping him to understand some differences that he is just starting to notice himself, and we are watching closely for when that happens.

Then, if presented lightly, it is not a label - it is an explanation that gives context to something at a time when he needs with, without reducing him to a word that has so many connotations for so many people.

zzzzz Wed 04-May-16 16:26:54

I'm not sure why you would treat it any differently than a diagnosis of asthma, epilepsy, visual impairment or appendicitis. confused

guyshahar Wed 04-May-16 17:04:25

I don't think it is any different from other diagnoses, and the word "autism" in itself is not a label - it's just a name for something.

It becomes a "label" when people put their judgments and emotional baggage into it. This is why it is dangerous for medical professionals to be using the word "label" - it is sort of pre-assuming that there is baggage around the condition, and thereby entrenching it. At best they may be wanting to protect the child from others' judgments, at worst, from their own.

I used the word myself in my last reply. I think it is because we have seen so many children who say as one of the first things they say about themselves that they have autism (or ADD). I am not sure why this is - you don't hear it anything like as much about other conditions. I think we were mindful of that - not wanting him to define himself as autistic when we know it is not the predominant feature of his personality - and also we know that he absorbs everything he is told very deeply - especially when it is about himself. That's why we want to choose the right moment (i.e. when it is useful to him to know) to introduce the concept to him - and then in a very light way, precisely to avoid it becoming a label.

zzzzz Wed 04-May-16 17:45:13

I don't think being autistic something I feel that negatively about. I wouldn't think it was "wrong" if that was the feature that my child highlighted any more than the would be particularly concerned if they identified themselves as their gender, nationality, sexual orientation, religious affiliation etc.

Borka Wed 04-May-16 21:39:12

we have seen so many children who say as one of the first things they say about themselves that they have autism (or ADD). I am not sure why this is.

Perhaps because they see being autistic as a positive part of who they are?

PolterGoose Wed 04-May-16 21:46:28

Message withdrawn at poster's request.

zzzzz Wed 04-May-16 22:13:45

It must be heartbreaking to be so horrified by your child's disability that you want them never to identify as having that condition. What leads to this way of thought? What is the fear?

LogicalThinking Wed 04-May-16 23:18:51

A lot of autistic people are proud to define themselves as autistic. There is absolutely nothing negative about that. I don't think that it is something that should be hidden from children - even in a subtle way. The notion that the more you talk about it, the more autistic they will become just makes no sense. They are more likely to become more comfortable with who they are if it is an open subject that they do not feel they have to disguise or hide from anyone.
Other people need to know in the same way as you would tell other people if your child was deaf or sight impaired - because it would help people understand how to support them.

PatriciaMaxwell Thu 05-May-16 06:59:20

No it does not bother me. I would treat such kids normally only because they deserve it.

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