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toto
Butterfly
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22 Sep 2009, 4:31 pm

The 'label'
People may not be happy with this thread.

I remember a day. When I said I thought I was eccentric but largely 'normal'. And the school I went to looked at it like that. If someone said otherwise.. I would defend myself.

But today I am in a sorry state:
I don't want to die under a label. Fighting phantoms that put there by the mental health system. Carrying this burden of a cross.
What they do in Asperger/autism units is drum the label into you until it sticks.
And then you start chasing your tail...they have you fighting yourself
The label is like a handle- they can hold you with it.
In hospital:
It constantly redirects the focus back to you (destructive for the mind)
You try to focus on them and they deflect is and say blame 'the system' not us.. when really it was a bunch of real pieces of work who didn't appreciate having to look after you. So you focus on 'the system'.

Asperger's is a made up idea, thats all it is- an idea not a real disorder... couple of lines intersecting drawn by psychologists.
It was made by up professionals and marketed to Martyr parents who found it useful, 'oh' they say- its all right there was something wrong with him ... all this time, its because you're disabled.. thats all right then. It wasn't our fault, we're not bad parents.

In Asperger/Autism units....all the people are unique.. for why? Because all they did was collect up all the oddballs.

And when you think you have a good deal in the mental health system because they don't put you on drugs..and you hide under the label of Aspergers (who get better treatment), you aren't. Say you are normal and defend yourself.

With a disability label... they take from you far more than they give. That status marginalizes you.

This revelation I had after talking to a schizophrenic.. who explained to me about the power parents can exercise.. over your whole life.

I want to be normal again.
I don't want to become marginalized.

Most of all I'd like real friends again- who value my company. So I can distinguish who is actually treating me well instead of being submissive all the time.
I'd like friends after years of isolation around professionals who interact seeming nicely with you but....it's a subtle form of rejection that damages your mind (a lot). And they are doing a job it is their work to interact with you...how perverse.



toto
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22 Sep 2009, 5:03 pm

Addition:
What I am trying to explain. My whole life is lived within the perspective of this label. Its all I am. I have spent so long fighting them.



CanadianRose
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22 Sep 2009, 5:03 pm

Hi Toto.

I am undiagnosed, but I believe that I am high functioning autism or aspergers.

I went through my whole childhood being "weird," but functioning. Graduating high school with above average grades, took college courses and eventually a career course. Married about 7 years ago and have two children (my young son was recently diagnosed with mild autism - the more I read about autism and aspergers - the more I think that I have it too).

Anyways, backs to labels...

I don't mind the label. I don't refer my son or myself as having a "disorder" - I just think that it is a difference. I like the term "variation of normal."

I will tell you about another "variation of normal" - left handedness. Did you know that teachers used to see a child using their left hand and take the crayon out of their hand and put it into their right hand. This was because right handedness was "normal" and left handedness was somehow bad (in medical terminology the term "s" is still used to indicate left - for the latin sinistro - where our english word "sinister" comes from - there was something "sinister" about being left handed!! :twisted:

Obviously we have progressed beyond considers left handed people "sinister" and recognize that this is a variation of normal. Tool and instruments are designed to be comfortable to both right handed people and left handed people.

The way I look at it - my son is diagnosed with mild autism. He is still my son with his own unique personality. He is mischevious, he is silly and he is affectionate. He has a mild/moderate speech delay (which is being addressed with a Speech Therapist) and he is not as adept at social interaction (which is being addressed with an excellent consultant and ABA therapist). He will never be "Mr. Congeniality", but who the heck cares :P When he gets older - I am hoping that he will have the verbal skills and self knowledge to ask for what he needs to be successful in the classroom and (later) in the workplace. I am hoping that he will be aware - at least intellectually - of the needs of others and have the skills to inquire and clarify with others so that they are comfortable with him in both work and social settings.

Believe me - I struggle with the "label" on my son. However, I am approaching this label as a positive. People with other disABILITIES (which are visible and obvioius) can live and work in socieity, marry, raise families and be contributors to their community. Autism and Aspergers can be disABILITIES in the same positive light.



Maggiedoll
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22 Sep 2009, 5:15 pm

Look around at the people on WP.. Most of us, particularly the adults, have never had the "label" of autism. But we've all been outcast and marginalized anyway. It's not the label that causes it. Most of the people on WP came to the realization that autism was a possible diagnosis after years of trying to figure out why they couldn't just fit in. I never had a diagnosis as a kid. My name was a curse. Nobody needed to do anything more than look at me and spit out my name with disgust. Maybe you've been made fun of for having asperger's. I never knew what was wrong with me. It was just me.



MindBlind
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23 Sep 2009, 2:54 pm

I think I know what you're getting at. Because you have a diagnosis, it makes you different and because they have a name for it, they can dehumanise you. I believe that labels can be detrimental if used to control and degrade you. For example, I saw this putrid documentary about autism called "Make Me Normal" a few years ago at my school. It featured this school in London that specifically dealt with autistic people and what made it putrid was the staff. The woman who ran the school, while I am sure she does care about these kids, continually says "it's their autism making them like this and their autism doing this to them", reinforcing the idea that their autism is somekind of impenetrable cage. I felt especially bad for the kids because they blamed their autism for their bad lives even though they had other problems going on that weren't related to autism. Me and my friends at the autism unit at school were outraged because these kids were patronised and treated like they were stupid and all because they were autistic.

However, many times labels are helpful and even neccessary. Some people grow up never knowing what is so different about them until they have a name for it (which can be distressing and make people feel just as isolated). I'm lucky to have always known my "label" and I don't feel marginalised for it nor do I think that I'll only be remembered for this (though I do want people to remember that I have it). I don't know if this will make any sense to anyone, but I feel like I own my diagnosis- this is MY brain and this is MY life, y'know? Not my entire life, but I can't ignore it nor do I feel that it's a mental blemish. I suppose I'm just lucky that I went to a school that encouraged me to never think of my aspergers as holding me back, but rather that it creates different obstacles (not necesarily more or less) than other people. And of course, the obvious stuff about how some people cannot access a form of therapy without an official diagnosis, etc, etc.



Last edited by MindBlind on 24 Sep 2009, 11:53 am, edited 1 time in total.

tweety_fan
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24 Sep 2009, 3:37 am

CanadianRose wrote:
Hi Toto.

I am undiagnosed, but I believe that I am high functioning autism or aspergers.

I went through my whole childhood being "weird," but functioning. Graduating high school with above average grades, took college courses and eventually a career course. Married about 7 years ago and have two children (my young son was recently diagnosed with mild autism - the more I read about autism and aspergers - the more I think that I have it too).

Anyways, backs to labels...

I don't mind the label. I don't refer my son or myself as having a "disorder" - I just think that it is a difference. I like the term "variation of normal."

I will tell you about another "variation of normal" - left handedness. Did you know that teachers used to see a child using their left hand and take the crayon out of their hand and put it into their right hand. This was because right handedness was "normal" and left handedness was somehow bad (in medical terminology the term "s" is still used to indicate left - for the latin sinistro - where our english word "sinister" comes from - there was something "sinister" about being left handed!! :twisted:

Obviously we have progressed beyond considers left handed people "sinister" and recognize that this is a variation of normal. Tool and instruments are designed to be comfortable to both right handed people and left handed people.

The way I look at it - my son is diagnosed with mild autism. He is still my son with his own unique personality. He is mischevious, he is silly and he is affectionate. He has a mild/moderate speech delay (which is being addressed with a Speech Therapist) and he is not as adept at social interaction (which is being addressed with an excellent consultant and ABA therapist). He will never be "Mr. Congeniality", but who the heck cares :P When he gets older - I am hoping that he will have the verbal skills and self knowledge to ask for what he needs to be successful in the classroom and (later) in the workplace. I am hoping that he will be aware - at least intellectually - of the needs of others and have the skills to inquire and clarify with others so that they are comfortable with him in both work and social settings.

Believe me - I struggle with the "label" on my son. However, I am approaching this label as a positive. People with other disABILITIES (which are visible and obvioius) can live and work in socieity, marry, raise families and be contributors to their community. Autism and Aspergers can be disABILITIES in the same positive light.


just on the left handed point u raised, I remember my brother (NT)in school being forced to write right handed by his school in SA (he was left handed), anyway when we changed schools (we moved from SA to TAS in australia, due to my dad's job transfer) The teachers looked at the way my brother was writing with his right hand and immediately spotted the fact that he wasn't right handed.

goes to show that the left handed=sinister thinking hasn't quite gone away.



ChangelingGirl
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24 Sep 2009, 5:00 am

Despite the fact that I agree with you that professionals can use your label against you in "care", it isn't as simple to pretend to be normal and defend yourself for all of us. I for one don't like it that staff use my AS against me to make it look like I'm flawed and my Aspieness is the reason for the staff "having to" do whatever they do. However, the reality is tha tyou can only escape this trap if you actually have the capability to come across as normal to the people in the community, so that they won't end up calling the police and mental health on you. If, like me, you can't come across as normal sufficiently to defend yourself, the AS label is really the lesser of many evils that the mental health system has to offer its patients.



Psygirl6
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24 Sep 2009, 5:40 am

toto wrote:
Addition:
What I am trying to explain. My whole life is lived within the perspective of this label. Its all I am. I have spent so long fighting them.


toto: I have the same problem. All my life, especially my adult life, people have only seen me for the disability and not my real self. every time I am capable of so much, living independently without ever needing any help, and doing other things in life that normal people can do. Though only my disability affects me some what vocationally, but because I have a "label" the doctors, agencies and others put into situations that were to "regressive" for me. I have now fought all of them off.
I feel your pain. That is why for many years I have struggled with depression and anxiety. For many years I was medicated for them, but just recently, I finally told people how I felt about this disability stuff and how they over exaggerated it putting in horrible restrictive situations like residences. Basically, the doctors told me and my mom that all of my depression and anxiety symptoms were all caused by people seeing me for the disability and putting me in these restrictive agencies.