what's with the 'labelling' then?

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Registered: 03-27-2003
what's with the 'labelling' then?
9
Mon, 03-10-2008 - 7:27pm

Ok, away from Dee's query, what is your take on 'labelling'? How do you feel about it, and why? (I am sure we can keep this respectful and within the TOS)

My own take on this stems in part from my own experience, and it's odd, because my mother has taken the opposite route with the same experience. We both have rheumatoid arthritis. Hers is slightly more severe than mine, but in both our cases, you can tell something is 'wrong' (when it hits we both limp/use a cane). Mum refuses to acknowlege it, won't tell anyone (maybe because she is older? I don't really know) - her take on it is that as soon as she gives it a name, it has a power over her. Me, maybe because I am younger and get odd looks (or people assume I'm injured) when I limp, I tend to tell people if it seems relevant.

And I've always felt the same about Euan's Asperger's. DH doesn't want him to be 'labelled' but to me, that's like saying it is something to be ashamed of. And it isn't. If someone has a problem with the label, that's their problem, and it sure as hell isn't going to make the AS go away if we don't talk about it. If we are up front about it we can explain it to people, and go someway toward removing some of the barriers that DS faces that might otherwise exclude him. I'm proud of DS and love him. I wouldn't try to hide the fact that I need glasses to see, and I'm not ashamed of that 'imperfection' (frankly, I think it's an advantage when you are a professor LOL), and I don't see DS's AS as anything to be ashamed of. I think he's far more likely to get teased and have a hard time if we *don't* use the label, and people - particularly kids, or non-knowledgable adults - will just think he's a wierd kid who freaks out and flaps his hands sometimes.

So what is your take on the 'labelling' thing and why?

Kirsty, mum to Euan (9, Asperger's) Rohan (5, NT) and Maeve (2, NT)




Edited 3/10/2008 7:28 pm ET by kirsty1
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Registered: 03-27-2003
Mon, 03-10-2008 - 8:31pm

Well, I can see two sides to this.

                                

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Registered: 04-07-2003
Mon, 03-10-2008 - 9:20pm

I don't know whether this is directly on-point, but one thing I was told was that it's good for your kids to hear their dx early and from you, so the child learns about their dx in a positive context. If the first time they hear their dx is from a neighborhood kid or teacher who has a negative opinion of autism, then the autistic child is likely to form a negative opinion about who they are and what their disorder means.

Although my kids are clear about their dx, I personally use different verbage for my kids' dx depending on the setting and the need to announce their challenges. Sometimes I don't say anything, sometimes I call it a high-functioning form of autism, sometimes I say they have developmental delays, neurological issues, a medical condition, etc. I use whatever terminology best fits the setting, depending on whether I need to educate others or minimize embarrassment to my kids among their peers.

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Registered: 04-28-2007
Mon, 03-10-2008 - 9:48pm

Kirsty......I LOVE YOU!!!! Lol

You see I have no problem letting the outside world know what is going on with my kids. In fact the more upfront and honest I am (without shoving it down said throats) the more relaxed situations can become, and the stress level diminishes, for everyone.

It's not like I walk into the supermarket and shout down aisle 9 "Hey kids with Autism coming through!!!" 'course not. But if Liam starts jabbering at some poor unsuspecting woman about Yoda and his Star wars comic books, just because she says hi, I might then quietly explain "he has Autism." When I drop him at the gym day care if there's a new caregiver I'll always take them aside and explain he has HF Autism and explain the behaviours they may witness. It's more a damage control thing I guess in those cases. And I have to say I've not had an issue yet WHEN I perform said damage control. When I don't, there is invariably an issue; other kids teasing or the care giver disciplining overzealously, and then everything gets worse.

I personally am glad I've been the one to tell Liam about his dx. I haven't really explained anything to Cian, mainly as he's clearly not ready, and when Liam was that age (although it being pre-dx) he wouldn't have been ready either. Still I suspect Cian will absorb it in his own way as Liam has already asked if Cian is Autistic and I had to be truthful with him (using kid speak of course). It's like the pp said it's just one part of who they are. OMG, I'm jabbering again;)

Dee

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Registered: 06-25-2003
Mon, 03-10-2008 - 10:03pm

Kirsty,

Very interesting discussion, oh social Studies professor. I see a paper in your students' future...

Right now, I think a person's label is that person's business. It is for that person to tell other people their label, and to be proud or ashamed or whatever they see fit. Naturally this is not always possible when one is dealing with a special needs child, and in that case, Mom (or Dad) often has to make the disclosure decision. Often this descision has to be made on the fly, in less than ideal situations. Indeed, the disclosure may change as the child ages and the circumstances alter alongside.

There is also the question here of when and how you tell your child, and how that child can process the information etc etc. Peter is almost 10 and he does not know he has Autism. I haven't told him because I don't think he is ready to know and not use it as an excuse or something to hide behind. Some younger kids are ready to know, and that's fine. We all make these decisions based on our own circumstances.

I am in a similar situation to yourself in that I am 40, but on full disability and I sometimes (often) have to walk with a cane. However my ailment does not have a name yet, which makes it all the more interesting to explain. I usually tell people who ask (and many do, this is New York) that I have a spinal cord problem -which is true- I just fail to mention that "they" don't think it is the reason I sometimes lose me right leg (/side).

On the physical differences side, I do think that I have a right and sometimes a duty to raise people's awareness, particularly with invisible disabilities, but I tend to use myself to do that, and not my kids. It comes back to my first point. I may use and exploit my own labels however I see fit (or not) but it is up to them to use their labels as *they* see fit. Therefore for now, I use discretion with *their* labels unless very necessary.

This may change, of couse. I retain my woman's perogative in that regard :D

-Paula

visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
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Registered: 04-07-2003
Mon, 03-10-2008 - 10:30pm

I know I got some people upset over the labeling deal. And Again I guess I was off with my feelings. Its not that I don't want people to know Josh has a problem and he is an aspie.


He was diagnosed late in life at the age of 11. So for me

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Registered: 02-28-2008
Mon, 03-10-2008 - 10:42pm

This was part of what I was getting at with one of my prior posts. Some of our therapists are loath to label Graham as being on the spectrum. They prefer NVLD as they see autism as being so...final and limiting.

In all my digging around the only difference I could find between NVLD and AS was some perceptual difficulties with 2 dimensional representation and the idea that NVLD could learn to compensate for their difficulties. Well, Graham has been drawing in perspective since age 4 and reading Temple Grandin and Sean Barrett's book convinced me that some people on the spectrum are perfectly capable of learning to compensate for their disabilities. I'm not convinced that the AS label is a limit on what he or others like him can achieve.

So, I have to ask myself, why haven't I discussed his dx with him yet? Partly I haven't because he's very young for his age and a good opportunity hasn't really presented itself. But even as I type that it seems pretty lame. I don't know why I haven't discussed it with him yet. I do know that I have told select people who I felt either needed to know or needed an explanation. I told my Dad that Graham was an AS kid and other family members know. So why am I dragging my feet........?

I'm pretty open with my own dx of chronic depression and feel that owning that label was key to my finally being able to beat it into remission. I feel strongly that he should know at some point and that knowing will help him to better cope with his own symptoms. I guess I just feel awkward about broaching the subject out of the blue. I mean if he were to tell me that he felt different than other people or asked why he had such strong reactions.....I would probably be able to tell him then. But he doesn't ask many questions about himself.

Well, enough babbling about my thoughts on my situation. I guess I'm for using labels if it serves a good purpose - self-knowledge and empowerment. I'm against lumping people together as 'just a label'. Maybe the person-first method of calling them 'a person with 'the label'' is a good idea after all.

Just my two cents worth.

Drea

Andrea, mom to

Graham
Miles
Anson
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Registered: 03-27-2003
Tue, 03-11-2008 - 8:11am

My mum, who is far wiser than me generally, would agree with you that labels are bad. (this may be a generational thing?) Her argument is that they become self-fulfilling prophecies. Once you 'label' a kid as, for example, hyperactive, then you *expect* them to be hyperactive, they play up to your expectations, and you get into a cycle of expectations, reinforcing experience and behaviour that is hard to break out of. I think a lot of teachers who trained in the 70s did so about the time some psychological work on this was fairly new and it became ingrained in their teaching practice, which is why you find a lot of older teachers keen on avoiding labelling. I think there's something in that - certainly a lot of evidence about underperformance of boys, particularly Afro-Caribbean boys within the UK education context seems to back this up.


But I think there's a big difference between trying to avoid that cycle of low expectations and low achievement, and avoiding giving something a label or a diagnosis that might help explain the low achievement and even find ways to counterbalance it. And I think, for me, AS falls into the latter camp. Certainly Euan didn't have problems because he was labelled with Asperger's - he wasn't labelled until he was 8! - he had, in part, problems because he *wasn't* labelled. I think that for us the diagnosis made such a huge difference in our ability to understand and support him that I've only seen it as positive, and that's why I am in favour of labelling him with it.


I do feel differently about the AS than I do about other things. If you asked me if I would prefer Euan not to have AS, that's like asking, would I prefer him not to be blonde, not to be tall, not to be funny...it's so intrinsically part of him I can't imagine him any other way. But if you were to ask me, would I prefer him not to have asthma, yes, in a heartbeat. Carrying round medication and being afraid that he might one day have a fatal attack and watching him struggle in sports because he can't catch his breath isn't nice, isn't fun, isn't an 'integral' part of him, and if I could relieve him of that 'disability' I would.


Kirsty, mum to Euan (9, Asperger's) Rohan (5, NT) and Maeve (2, NT)

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Registered: 04-28-2007
Tue, 03-11-2008 - 10:25am

Oh Rina, it's ok. I popped a chill pill and I have had time to consider your pov.

I've always known Liam was ASD even before the multiple dx and docs, probably since age 3; it took until age 6 to get others to catch on though. And having Cian also on the spectrum I think I have adopted a do or die attitude. It's just too exhausting for me to hide their dx from others, especially when the neighbourhood sees two short busses come to the proverbial door each day. When I lived in Md and I hid all the various dx from everyone, Liam did get labelled, but as the bad kid that other parents should keep their own kids away from, kwim? It got so bad one Father actually tried to accuse Liam of sexually abusing Cian, and you can imagine what happened after that.

Now with me being open (although without the bullhorn attitude) ILiam is about as accepted as he can be (considering there aren't many kids his age around us)

I try to keep my exhibiting of the boys' dx it subtle, like with the car magnet etc. but I do find in certain public places I need to be more open about it, and although I do agree there are many idiots out there who will remain idiots no matter what, my two differing experiences have taught me it's ok to be open, but when necessary, and necessary will always be a judgement call.

Dee

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Wed, 03-12-2008 - 10:11am

I know I'm coming into this game really late (been dealing with Claire's ear infection for the last several days) but I am one of those "tell the world" kind of gals.

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