Re: Indie letters

November 29, 2007

Hello

> ----- Original Message -----

> From: zpapacarroll

>

> But I really would love a serious answer if someone knows it - all

> this discussion (both here and in the press) about eradicating

> austistics and aspergerians - I want to know who they are

opposing, who the people are who are trying to annihilate them with

cures, and exactly what they are proposing.

>

> ===>I'll take a stab at this as I had just the type of

granddaughter that they are referring to. I don't wish to offend

anyone, is included, as is has been a thoughtful and

respectful member here and offered some valuable insights.

>

> First, no one is trying to " treat " them, but they do not want

anyone " like " them treated either. Again, my dgd, who was extremely

close to Asperger's would fall into this category.

>

> She was not in pain, not physically, no digestion problems, plenty

of language, very academically and musically talented. What she mostly

lacked was an inability to connect to others, although she probably

would have grown up to be able to interact, but not connect, truly, to

other " Aspies " like herself.

i am slightly different there. i am a well respected member of my

adult asperger social group. i take aspies/auties on holiday twice a

year (collect the money, pay for the holiday, book the tickets and

write the plan). i can in a way connect to non auties/aspies (we call

them NTs). My academic achievement however is hampered somewhat by my

dyslexia, i am attempting AS maths in the hope it will find me work.

It is complicated by my muddling opposites (adding when i should take

away and confusing adding and taking away negative numbers).

>

> In discussing this with other parents' of Aspies (including my own

sister, my 11 year old nephew is also Asperger) I am told that their

quirks are " part of their identity " and that the fear is if you treat

them they will somehow lose their superior intellect.

Yes we do fear that. There was an article written in asperger united a

few months ago about what a cure would mean.

>

> First, I never considered her Aspergerishness part of her identity

anymore than someone with diabetes considers it part of their identity.

Diabetes is different to aspergers. Aspergers is to do with how we

think. Diabetes is to do with how we process and store sugar in our

bodies. We can train our minds to think differently but we cant train

our bodies to produce insulin or process sugar better.

> Nor did she, I believe, nor will she ever.

i was unhappy with my aspieness before i went gf/cf and went off

risperdal. i hate the way doctors treat our mental health problems

with psychotropic drugs.

>

> Second, treatment has only made her be able to share her " gifts "

with a larger number of people, our entire community. She went from a

3 year old who people assumed was deaf (very bad auditory processing)

to a very self confident soon to be 7 year old in first grade who is

admired by both the staff and students for her reading and math

abilities and something infinitely more important.

Im pleased she is feeling better with biomedical interventions.

>

> Her school (public) also teaches social skills and unlike most

schools rewards character. She was the child in her class chosen to be

given the " kindness " reward, because the teacher said, she was always

the first child to offer to help other children.

i have always been a kindhearted individual. Also my neurodiverse

friends are kindhearted.

> And that, to us, signals and culminates in what we have been working

for. This, to me, is also at the heart of why the Neurodiverse are

protesting.

If anything we would love to be able to be like your granddaughter.

>

> Aspergerians often, for the most part, lack the ability to see

things through others' perspective.

This is not the case with me.

> They have emotional blindness and cannot imagine, even for a moment,

what it is like to be anyone else, they have only their life

experiences and feelings to consider so they are unable to extrapolate

from watching others' feelings of connectedness and empathy. Again,

not trying to be mean, just trying to explain.

This is not the case with me but could be with some of my less aware

friends.

>

> To me, it comes down to what you value, even if she would have lost

every bit of her " gifts " we would have continued. The best day of my

life, hands down, occured last summer when I dropped her off at day

camp when she spotted one of her little friends who had been absent

for 3 days. They saw each other at the same time and both ran toward

each other and hugged when they met.

i am able to do that as well.

>

> As I drove home I couldn't help remembering how just a year and a

half earlier when a child tried to hug her she recoiled and now she

was hugging with abandon, truly able to connect to others.

i only do that when certain people try to hug me. i find thier hugs

physically painful and im 28.

> That is what we value here as I know lots of smart, miserably

unhappy people and lots of other people without any " gifts " who are

truly happy and connected to others.

i know a few people like that. One aspie dictates what his parents do

and when they go out. As this behaviour has never been tackled its now

inbuilt and he " gets away with it " . Another person wont claim DLA or

get a railcard as he doesnt consider himself disabled.

>

> I've said this before but the main reason we started Biomed was

that she is the only child of an only child and someday she will be

alone. There are no other siblings/family or anyone and I shudder to

think what her world would have been like without treatment.

Agreed it has made her a happier person. We are not against that at

all and never have been.

is

>

November 29, 2007

well that would be nice wouldnt it, fashionable recovery from

autism. recovery from autism will inevitably open up such a

political pandora's box that will cost billions.

the politics of autism, always gets in the way. parents like me and

the rest, who remember their children pre autism, who know something

went wrong and know that biomed has helped to heal our children,

also know that autism wasnt just " a genetic aberration " . It wasnt

that autism was just " meant to be " , cause when the illness goes, the

so called " autism " goes with it. i dont set out to " cure " autism. My

son didnt have a problem pre 14months old. i set out to recover from

autism. something happened to the infant i had, who could

talk, put an 18 piece train set together and play with other

children and kick a ball. I want that boy back and i have no doubt,

as i watch him struggle to initiate with other children now, at the

age of 4, that he wants that boy back too. He has a very limited

life, with no friends, and is totally dependent on his family and is

so very different from other 4 year olds who have a world in front

of them that they can access so much easier than he can. He has lost

out on so much that other kids and parents take for granted. I want

him back for me as well. He is sitting in the living room right now

with his father who is trying his best to understand him. autism can

be very hard on fathers.

when parents heal their children, the autism " presentation " can be

reduced or even is removed. so, what exactly was " autism " in the

first place if the presentation/behaviours of autism can be removed

when the body heals??? am i, as a parent to allow my child a life

of pain and discomfort to ensure he never lets the " side " down? so

he can continue to be a shining example of autism personified?

My son had chronic constipation for 3 years of his life. His

presentation was major hyperactivity, walking on toes, squatting,

hanging over furniture (in pain), chronic viral infections,

respiratory infections, numerous hospital visits, howling in the

middle of the night, bloating, vicious excema and self limited

eating. Well, turns out this wasn't autism at all, (as his doctors

suggested)it was a medical condition. Yeah, it affected how he

thought, he couldnt think because of pain, he couldnt sit still

because of pain/discomfort. His whole being was crying out " help me

mom " .

He didnt want to be with anyone cause he was concentrating on his

own bowel and how to relieve it.

others would have thought his strange movements might just be

autism. they weren't.

I wonder, though in terms of the future, after years of feeling the

pain and discomfort of bowel and other problems, and having a mommy

who couldnt " fix it " how this would impact on his thinking. when you

feel good, you do better, you are happy, ready to engage. when you

dont feel good, you just wanna lie in bed. when you have parents you

expect them to help you in every possible way they can. what parent

with a child like this would say " no johnny, you are autistic, and

we must not help you because if we help you, you might not fulfill

the diagnostic criteria any longer and you might offend your doctor

or other persons with autism????? "

so by the age of 10, how much time would have been wasted by my boy

concentrating on pain and discomfort? How many opportunities would

have been lost? how much interaction can you have when your guts are

twisted?

How would you want to " be " with others, or how do you take your mind

off pain to learn new things when in this state? this affects

thought/learning/patterns, etc,

using biomedical interventions, which is what the parents do on this

board, is not " eradicating " the personhood of those with autism. In

fact, its quite the opposite. Its permitting the person to actually

be who they want to be, (not who they are meant to be by the way,

there is no such thing)minus the medical conditions, giving them a

choice to be something else than a walking talking pain factory.

as a parent, i have a totally different perspective than a person

with an asd, who does not have children. I must do what is best for

my child. I would gladly take my child's difficulties, including all

the discomfort and pain he has experienced since birth.

I also believe beyond the shadow of a doubt that autism is man made.

The environment, the filth we have been living in and that has

surrounded us for decades has contributed to the rising rates of

autism dx around the world and our children have suffered for it. we

can pussy foot around this issue, but i am sure many parents here

believe this, my son's porphyrins tests are testimony to this as was

the womb he was gestated in (the average womb is a toxic sea)

there is so much more this story than just using biomed. My child

has been hurt, and i am angry about that. Not much i can do about

the anger, but as they say, success is the best revenge, and there

is no way I am going to allow my child to just continue on, the way

he did from the age of 2, so that he winds up like the people i

personally have witnessed at the local " mental hospital " i mentiond

earlier. I am not prepared to take any chance on just letting my

son " be " his self, his autistic self or otherwise, whilst he

continues to have physical/medical ailments.

this is not about being " afraid " of autism. I used to be afraid of

autism pre diagnosis, due to ignorance about the condition. Now i

know more about what autism is and the political machinations that

go on worldwide, to keep autism in a static state. I am berated for

this in my own personal life, and i must remind myself, that the

argument isnt about me or my child, its about the whole world coming

down on parents who dare to help their children from a condition

that doctors know very little about and about whom the government

has no political will to investigate, for very obvious reasons.

however, when i hear from persons like alexis that autism and

aspergers equal learning disability, i do get angry again because

this misdirected myth is generally believed by society who doesnt

know any better and does much damage to children like mine. I am

also surprised that this comment came from a person with aspergers (

alexis i did not know you had aspergers as the only time i have ever

seen your name has been in the last in the few days) I would have

thought that you would know that this myth is indeed a myth.

>

> In a message dated 29/11/2007 22:29:55 GMT Standard Time,

> alexis.atrekkie22@... writes:

>

> I am asking WHO is threatening them with eradication. WHO. Tell me

> > the name of persons or organisations that are advocating that

> > autistics and aspergerians are treated " against their will " or

value

> > fashion or whatever.

>

> Ok, i thought it was the parents here. i guess i was wrong.

>

> >>>I thought (and of course I maybe wrong) that by us using

biomed to help

> our kids and as we get better at it and more is known, more kids

may recover,

> it could then become 'fashionable' to cure autism/s and then

society as a

> whole, including governements may feel that 'curing' the autism/s

may be best

> for society. (probably for cost issues)

>

> Its at that point the ND's would be threatened, not by indiviudal

or

> organisations but by society as a whole. By treating our kids we

are fuelling this

> fire..............?

>

> But I have never discussed this with anybody ND, so I am guessing

>

> Mandi x (who has been away for 2 days - what a lot of post!!!)

>

November 30, 2007

as a side note, biomedical interventions and other interventions for

autism do not equal eugenics. its actually the medical

establishement that does absolutely nothing for our children that

are researching the autism " gene " to abort babies who have it.

so, for those who believe that autism is " genetic " and that a gene

will eventually be found, let's hope to God, they never do.

I want life for children like my son, not abortion.

think about it

> >

> > In a message dated 29/11/2007 22:29:55 GMT Standard Time,

> > alexis.atrekkie22@ writes:

> >

> > I am asking WHO is threatening them with eradication. WHO. Tell

me

> > > the name of persons or organisations that are advocating that

> > > autistics and aspergerians are treated " against their will "

or

> value

> > > fashion or whatever.

> >

> > Ok, i thought it was the parents here. i guess i was wrong.

> >

> > >>>I thought (and of course I maybe wrong) that by us using

> biomed to help

> > our kids and as we get better at it and more is known, more

kids

> may recover,

> > it could then become 'fashionable' to cure autism/s and then

> society as a

> > whole, including governements may feel that 'curing' the

autism/s

> may be best

> > for society. (probably for cost issues)

> >

> > Its at that point the ND's would be threatened, not by

indiviudal

> or

> > organisations but by society as a whole. By treating our kids

we

> are fuelling this

> > fire..............?

> >

> > But I have never discussed this with anybody ND, so I am

guessing

> >

> > Mandi x (who has been away for 2 days - what a lot of post!!!)

> >

>

November 30, 2007

This is exactly why everyone needs to stay out of the business of

parents raising their children.

If it becomes accepted that parents are NOT the people best situated

to decide what is in the interests of their children, then we open the

door to: 1) all children needing to be " cured " against the will of the

children/parents OR 2) no one being able to avail themselves of

biomed, should they choose.

Even if any single person believes that one of these two options is

desirable, it is still a dangerous thing to espouse, because once

government has the authority to usurp parental authority, then it's

just a matter of a vote, as to which of the two options are chosen.

> >>>I thought (and of course I maybe wrong) that by us using biomed

to help

> our kids and as we get better at it and more is known, more kids

may recover,

> it could then become 'fashionable' to cure autism/s and then

society as a

> whole, including governements may feel that 'curing' the autism/s

may be best

> for society. (probably for cost issues)

>

> Its at that point the ND's would be threatened, not by indiviudal or

> organisations but by society as a whole. By treating our kids we

are fuelling this

> fire..............?

>

November 30, 2007

> Again another safety protocol which is not an autism intervention.

is, are you one of those literal people? I wasn't thinking this

was the case, as I see you trying to make inferences and assuming

" implications " all over the place - did you think that I was saying

that carseats are an autism intervention?

This was evidence for my claim that children are not well equipped to

make decisions about their well being, and I think it demonstrates

that well. You seem to be sidetracked by the form of my argument

however. If it would help you for me to try to be very literal and/or

explain the form that my arguments are taking in order to help you

evaluate them, I will try to do that.

> > Children often don't know what is best for them (and adults suffer

> > from this often as well, but we let them do a lot of what they want

> in the name of autonomy), and the usual route around this problem is

> that their parents try their best to act in the interests of their

> > children.

>

> Agreed in some cases

>

> > Sometimes that means holding their kids down and giving them

medicine.

> Not neccessarily but its a shame it has to happen this way. I

understand that it has to be done in some cases.

Again, I can't even begin to reply to this because it is all so

incoherent here, as when you have addressed it before. Sometimes you

seem to be saying that you agree that it is reasonable to treat

physical ailments, but not if you have to force the child, then it is

okay to force the child sometimes, but it is a shame (sure it is), and

then maybe even children shouldn't be forced - plus you are often

hinting at something else but saying things like " not necessarily " and

then not explaining things. I honestly have no idea after all these

emails what you actually think about this.

And to be fair, I am not sure it matters. Meaning this in the kindest

way possible, I don't really care whether you approve of what I choose

to do or not do with my child. Just as I do not expect you care about

whether I approve of what you do. I think the relevant thing is that

no one has mentioned anything about treating adults (including you and

your friends)against their will.

> >

> > Well, again (sorry to be repetitive), no one here suggested that

> > adults who are happy (and even unhealthy) be forced to take

> treatments against their will.

> Ok that makes sense. i will tell my friends thats whats happening.

Yes, I think that is an excellent idea. Given your lack of

substantive response when asked to explain where you got the idea that

someone is trying to treat autistics against their will, (and forgive

me for being so frank) your friends are starting to sound like they've

invented their enemies.

> > Again, I have no recollection of anyone here saying anything

> remotely about shame or forced interventions for people of an age

> where they are capable of making decisions for themselves - so I am

> not sure who you are fighting with.

>

> Thank you for clearing this up. Ok so its not being forced upon people

> who dont want it.

I am glad that it is finally cleared up.

> > If someone here said something like this,

> > please quote them so I can see what you are talking about.

>

> i thought it was implied.

This is absolutely incorrect so, no, it was/is not implied. Let me

explain this very literally: Implication is an expression of

" entailment " in logic (and language). What this means is that for

some statement (let us call it Statement A), it is NECESSARILY the

case that a different but related statement (that I am calling

Statement is true. The truth of statement REQUIRES the truth of

the other.

So nothing is ever simply " implied " - it is only ever the case that it

is implied by something else. You didn't say what " implied " that

people are trying to force-treat adult autistics. And there is

nothing you said, nor something that anyone else said that " implies "

the necessary truth of the statement " adult autistics should be

force-treated. " If you still think there is, please send me the

direct quote and I will try to help.

I hope this clears this up and you realise that no one here has been

arguing this point with you.

November 30, 2007

Again, this is WRONG - please see my explanation of what implication

actually means in my other response.

Let me further point out that you are the ONLY one who has mentioned

DAN! at all in this discussion, and that furthermore I have never seen

a reference in this group (or anywhere else, to be brutally honest) to

treating people against their wills. Maybe there are some people who

are autistic adults want their autism " defeated " - I would give them

the autonomy for that decision just as I give you the autonomy for

your decision " not to defeat " (whatever that might mean to you) - but

again, I think the relevant feature here is that you are arguing with

people who have never made the claims that you are attributing to

them, nor have they " implied " them. There has been no discussion of

eradication, nor any implication of it.

I am sure you don't appreciate being reduced to some stereotype,

ridiculous caricature or easy-to-out-argue straw man in someone's

mind, contrary to all the evidence that exists in what you have

actually said. I cannot for the life of me figure out what you are

hoping to have happen by doing so to others.

> The term " defeat autism now " implies irradication. DAN! doctors are

> doing this.

>

>Ok, i thought it was the parents here. i guess i was wrong.

November 30, 2007

Hi -

It's a very interesting story about your granddaughter! It also

sounds like she is somewhat uncommon in that she had no medical issues

- I keep reading that over half of autistics/aspergerians have gut

issues, and that with other physical symptoms (like the sensory

problems that is says she suffers with) and others, most of these

people do have medical problems.

Now, it seems like you're saying something like: the people who are

complaining about others' biomedical treatment are not so worried that

someone is going to treat *them* against their will as they are

worried about what it says about them if people who are " like them "

are seen as flawed and in need of treatment.

Are you thinking that by someone else choosing to treat their child,

that they are feeling devalued?

I have a child very similar to your dgd, except that mine has a

language delay of some significance. His hair test showed a lot of

lead, and then we found the lead paint in his room in this rented

house. The meds that remove lead from the body seem to have a direct

effect on his language. Do the lead ions in him somehow become part

of his personal identity? Not being silly, I think someone could

argue for that if they wanted - we have neurotransmitters that make us

who we are, and all the other minerals, vitamins, chemicals, amino

acids, etc. I think all of this is becoming increasingly difficult as

the newer research showing correlations between mercury and autism,

for example, are coming to light.

Thanks for clarifying the idea that it is an idea or feeling that

is is trying to oppose, more than any actual person or

organisation trying to do something to her against her will.

November 30, 2007

well said

I realised this acouple of months ago when Autism speaks (US)

anounced there research director (who has a eugenics background) I

guess the NAS needs space between it and Research autism as prenatal

testing is where well funded research is heading .... eventually.

There is nothing wrong with my genes an I would not wish to be given

this choice .

Mark h

> > >

> > > In a message dated 29/11/2007 22:29:55 GMT Standard Time,

> > > alexis.atrekkie22@ writes:

> > >

> > > I am asking WHO is threatening them with eradication. WHO.

Tell

> me

> > > > the name of persons or organisations that are advocating

that

> > > > autistics and aspergerians are treated " against their will "

> or

> > value

> > > > fashion or whatever.

> > >

> > > Ok, i thought it was the parents here. i guess i was wrong.

> > >

> > > >>>I thought (and of course I maybe wrong) that by us using

> > biomed to help

> > > our kids and as we get better at it and more is known, more

> kids

> > may recover,

> > > it could then become 'fashionable' to cure autism/s and then

> > society as a

> > > whole, including governements may feel that 'curing' the

> autism/s

> > may be best

> > > for society. (probably for cost issues)

> > >

> > > Its at that point the ND's would be threatened, not by

> indiviudal

> > or

> > > organisations but by society as a whole. By treating our kids

> we

> > are fuelling this

> > > fire..............?

> > >

> > > But I have never discussed this with anybody ND, so I am

> guessing

> > >

> > > Mandi x (who has been away for 2 days - what a lot of post!!!)

> > >

> >

>

November 30, 2007

Hello

Vicky said