Re: Trusting Autism Pride Advocacy

[Guest guest]

i try not to get too caught up in it. All of our youngsters are on varying

degrees on the spectrum. mineself as well. mostly i'm too busy in survival mode

just trying to make it through the day okay to worry about it or have time for

it. dont much have time for that drama when mine own is enough to keep me busy.

some stuff i can agree on some others i don't and it doesn't matter on which

side of the fence its coming from. i've only my own experience and mine families

at hand to deal with and dont dwell on things too much. i nearly liked it a bit

better when what was strange about me was still a mystery. as the answer to that

question didn't relly change things too dramatically.

DJ

>

> Trusting Autism Pride Advocacy

>

> With regard to the autism is not a disease advocacy I just have a good sense

of humor.

>

> Catch My Disease.

>

> http://www.youtube.com/watch?v=EstY-8NWSgE

>

> I have not trusted organizations for some time due to senseless disputes

causing hard feelings with those who try to help those like me. I was accused of

being an ASAN. It took me a week but then I found what they meant by calling me

the name of ASAN. This group is involved with anti-abortion and is following the

trend of associating autism people like the Jewish in WWII comparing Hitler

destruction of life to the abortion research.

>

> For of all as a person with autism I do not view myself diseased even if a

science of pathological thought has this as a generic concept. I do not believe

people are calling me a puzzle. I do not think autism is an identity and I do

not know of a autism culture. I do not like how people attack professionals that

have only tried to help. Also I do not like being called a diagnosis as an

identity like autistic.

>

> I have been aware of self-advocacy movements for ten years. I never agreed

with the pressure of viewing insults were there were none and being considered

ignorant if I do not think like extremely overly sensative and confrontational

people. I do believe that every human deserves dignity and the foul of this is

at times mutual between self-advocates and otherwise.

>

> People seem far to radical to me and oppositional of each other in the autism

community at times. That is why I don't like it to much. It's a social mess at

times and over complicates the idea of non-confrontational advocacy that helps

people. Instead for little things more energy is spent on hyper-sensitivities

from a pride I don't quite understand rather then quality of life and inclusion.

Sometimes reverse discrimination happens and the so called normal people are

bashed. It's just rebellious to me and destructive. It's destructive and

senseless given people really do need help and it is distracting.

>

> Young

> HFA

>

[Guest guest]

You may need a vacation. I want to go bait great white sharks. I've learned

Ocras can kick their butts.

It is awesomeness.

Young

>

> i try not to get too caught up in it. All of our youngsters are on varying

degrees on the spectrum. mineself as well. mostly i'm too busy in survival mode

just trying to make it through the day okay to worry about it or have time for

it. dont much have time for that drama when mine own is enough to keep me busy.

some stuff i can agree on some others i don't and it doesn't matter on which

side of the fence its coming from. i've only my own experience and mine families

at hand to deal with and dont dwell on things too much. i nearly liked it a bit

better when what was strange about me was still a mystery. as the answer to that

question didn't relly change things too dramatically.

>

> DJ

>

>

[Guest guest]

i do need a vacation. and that sounds like fun. i still love to play although it

seems like playing and laughing is not okay for adults to do. things i got away

with as a child person i don't so much anymore as an adult person. got baker

acted back in May for very little solid reason, so that spooked me something

awful. i try not to stim in public, laugh too loudly, or avoid eyes(a big no no

so i stare at furry and not so furry eyebrows normally, they can't tell, well i

think they can't. anyhow, i could be wrong), and suffer through handshakes and

lead a pretty much sometimes uncomfortable sometimes almost comfortable life on

the outside. i don't make the rules just got to live by them. i need people too

much to shun society so adjusting and navigating through established said

society is reasonable.

i always relax around animals though. they dont have crazy social rules, or

rather they do but i can totally relate much better to their social heirachly

than humans, (when i was a child person i lived life as a dog and loved that

time as such even though i was a hairless dog mostly and streaking through

outside sniffing 'other' dogs buttock holes was also a no no and I was severely

punished for it, sadly i don't do that anymore, that's just not okay but wearing

crazy high heeled shoes is... hmmnn..Like i mentioned before i don't make the

rules I just learn to live by them...).

we swam with the dolphins which was fun but anything animal related or plant

related we absolutely love. we love the water and that's always really great.

mine dolphin, that's what i call my child person she has autism and rett

syndrome so she's a bit on the fragile side and there's not so much she can do.

i'm in the " center " of the acceptance versus curing drama i guess one can say.

where i want to do all i can to help alleviate her condition and cure a lot of

what is wrong with her and me while wanting her and me to be accepted as a

complete and whole person too. her body is broken and doesn't work right but her

spirit is complete and whole. so i always listen to all sides and as the saying

goes. " i eat the chicken and just spit out the bones... " that means that i take

what i need or what relates to us or what we can use and just disregard what

doesn't.

i've long made peace with the fact that i'll always have autism as a part of my

life coloring my experineces and my interpretation of the world around me, but

it's no longer a prison for me, or defines the all of who i am either, I'm juli

first now, autism is no longer something that gets too much in the way anymore,

where once it was like a roadblock now it's just a speedbump. i've adapted and

desensitized over the years and am more comfortable in my skin and peoples (in

small doses please!!!). and i mean that literally, being more comfortable in my

skin, that is, since both my skin and body was sometimes some alien thing that

really bothered me for a very long time...

I am now part of this crazy world and mingle mostly okay with the strange

peoples in it while still being me which i'm okay with NOW. but i've come a long

way and had a lot of help back when peoples had no clue what was up with what

they saw as a crazy child before them. (which really when you come to think of

it i thought they were just as crazy... i think crazy and in the same vein

'normal' can be mostly in the eye of the beholder...)

thanks for the link. we love watching nature shows and love it better in real

life. mine dolphin while mostly physically disabled as well and does so much

better in the water, or with horses, her dogs, her fish tank, her plants. people

oftentimes look at her in pity and shake their heads sadly. animals are more

curious. She isn't broken or pitied by our ferns or our dogs though. she's just

herself. not that i wouldn't move the world itself to alleviate her condition

which i will since i don't beleive anyone that says i can't do anything. i just

get bellirgerent when they do anyhow..

And her Rett Syndrome hasn't met me yet and i'm a force to reckon with too, and

even if i don't get rid of it, i will find ways to contain it somewhow and make

it back off and have actually done so. she's not on a feeding tube or suffers

from bone mineral loss or muscle wasting or is unhealthiy tiny as I researched

another option and pushed for some treatment that i felt would work and it did.

so she's the first rett child that has seen improvements of this kind and docs

were happily surprised and it will mean a great deal to others in her condition.

someone said it took an autistic to figure out another way. and i felt happy

because it was the first time nearly that my autism wasn't a liability or

something to be suppressed. in this case it was something that had helped the

quality of life in my child.

But in spite of some victories some battles i have lost as right now i've just

noticed that i've rubbed my fingers until they have bled. and that bothers me

that i couldn't STOP and it got so bad that i've hurt myself unintentionally

AGAIN... like biting down on my hand in a bad way or dislocating my thumb to

hear it's popping...NOW i would easliy take a magic pill that would make those

symptoms go away... but then as it is said i can't win them all. some battles i

will win, some i will lose, i'll just go on again afters. yesterday isn't much

to dwell on and tomorrow doesn't need me to worry about it, it's got enough

peoples doing that already that it doesn't need me to join in.

thanks for the link. We both like sharks and whales.

DJ or Juli

> >

> > i try not to get too caught up in it. All of our youngsters are on varying

degrees on the spectrum. mineself as well. mostly i'm too busy in survival mode

just trying to make it through the day okay to worry about it or have time for

it. dont much have time for that drama when mine own is enough to keep me busy.

some stuff i can agree on some others i don't and it doesn't matter on which

side of the fence its coming from. i've only my own experience and mine families

at hand to deal with and dont dwell on things too much. i nearly liked it a bit

better when what was strange about me was still a mystery. as the answer to that

question didn't relly change things too dramatically.

> >

> > DJ

> >

> >

>

[Guest guest]

Thanks for the reply.

I find the autism community online socialization to complicated. I am frustrated

with it as I wonder about things and it cannot be understood. Here where I live

there are alot of supports for adults with at least HFA but not A.S. I have HFA

and from what I know there are a few differences but I am sure. My job in

advocacy is employment awareness and which includes supportive employment. I am

launching a county wide campaign. I work with the media, the local inclusion

agencies and develop products for individuals with autisms and other

developmental disabilities can make a wage at.

I was socially attacked by some pride advocates that were very rude and called

me names online. So I'm not happy and feel like acting out. All my dedication in

life is advocacy and for some angry extremists pride people to attack it without

constructive input really upset me. I'd like to see them be brave enough to be

on the front pages of newspapers, radio and all that and try to make a

difference instead of moaning and complaining about the image of autism and the

so called NT's which I don't believe in that nonsense.

I don't like some of this social nonsense when people need be included and that

is simple, not so complex..

We will be contacting national, local and somewhat related organizations all at

once by mail in one massive social networking attempt.

I'd like for people to hear my ideas and I've got allot of allies.

Young

> >