Re: Indie letters

[Guest guest]

Hello

>

> No that's absolutely not the case, my youngest son does not have a

choice to accept or not accept who he is or what he has, there is very

little choice in his life, period.

If he is unaware of what autism means then no he wouldnt have a choice.

> As for stress levels being equal for parents of HFA and Severe

autism, that is also wrong.

Try saying that to the parents of our support groups. Both sets have

equal stress whether or not they have HFA or severe autistic kids.

> My boys are at either end of the spectrum, there is no comparison in

stress levels.

> With a more severe child every minute of the day can be stressful,

When i was at my worst then that was the case. For one year i lived in

a constant state of anxiety, i had to be prompted to do anything. My

carer ended up with severe depression as a result, she was my gran as

mum couldnt cope (or understand) with me.

> my youngest needs constant 24/7 watching, he has escaped onto the

roof of the house in the past, he has flooded the house, he has harmed

himself etc.

i went through that stage where i was self harming every day for weeks

on end.

> I am limited in where I can take him, he can go into rage cycle in

the blink of an eye and in any location,

Sounds like thats his only form of communication. If he could

communicate his needs to you in another way, would that make it easier

to take him out? i have been through that 2 before gf/cf diet.

> he has head butted my car windscreen clean through.

> He cannot tell me when he is in pain, so every rage needs to be

carefully considered as he could have appendicitis or just be

understimulated, no way of knowing. I could go on and on.

i can see what you mean but isnt an adult having a meltdown where they

are shouting at you for hours on end just as stressful?

> My HFA son causes stress in as much as I feel his pain and

isolation, I worry for his future, I worry about his state of mind,

but is not constant, all the time and we can have really good quality

time communicating in the normal way.

There is no such thing as a " normal way " . There is a housing scheme

that can help if you can get the home support 1st.

> There really is no comparison living with a very severe child is

> unbelievably draining, alongside the worrying and of course the

emotional cost of loving your child to bits and watching everything

being a struggle for him, and I mean everything.

If there is no comparison then the stress levels must be the same as

you cannot compare the situations.

> I am saddened and concerned for my HFA sons future but I lose sleep

at night and am frantic thinking about my severe childs future.

i do worry to an extent about my future. i am unable to find suitable

work for myself, even if i did then i would have to earn £500 a month

to stay in my home.

is

> Vicky

>

[Guest guest]

>

> As for stress levels being equal for parents of HFA and Severe

autism, that

> is also wrong.

> My boys are at either end of the spectrum, there is no comparison

in stress

> levels.

For my part, when my son was at his lowest point, the stress levels

were far, far greater than what we live with now. One example:

comparing the days when my son had seizures to now, when the seizures

seem to be gone. Each day, no matter how bad it is, without seizures

is better than the best day with seizures.

And I would never claim to know the extraordinary stress that you

experience Vicky, with two boys, one of whom is so obviously effected

by his medical problems. I can guess at it, because of our own

experiences, but I cannot know it. Why is so difficult for other

people to acknowledge this? What are they afraid of losing?

Anita

[Guest guest]

Well this chain of posts has left me feeling really really angry, and

then I thought, is has Aspergers so of course she cannot get it. I

think that the only way she is going to get it is to visit some of us

with children who are truly low functioning due to autism, which we

know has a clear medical basis, and see for herself what it is like for

the children and the families. And even then she may not get it.

Sorry if this offends from being totally un-PC but quite frankly

hearing all the drivel about it being " their choice whether they want

to be better or not " and comparing our children to people who have

social difficulties or depression or " if they were biomedically treated

then they would no longer be Einstein " is just so outraging to my whole

being that I do not care one bit if I am being un-PC or offend anywone.

Celia

(with a son who could be Einstein if he did not shit on the floor and

play with it - and is still in nappies at 14 - and has no concept

whatever of consequences for actions - and cannot speak - and needs FCT

to even use a computer!!!)

[Guest guest]

Anita said " what are they afraid of losing? "

wow, i would love to read an answer to that one.

> >

>

> > As for stress levels being equal for parents of HFA and Severe

> autism, that

> > is also wrong.

> > My boys are at either end of the spectrum, there is no

comparison

> in stress

> > levels.

>

> For my part, when my son was at his lowest point, the stress

levels

> were far, far greater than what we live with now. One example:

> comparing the days when my son had seizures to now, when the

seizures

> seem to be gone. Each day, no matter how bad it is, without

seizures

> is better than the best day with seizures.

>

> And I would never claim to know the extraordinary stress that you

> experience Vicky, with two boys, one of whom is so obviously

effected

> by his medical problems. I can guess at it, because of our own

> experiences, but I cannot know it. Why is so difficult for other

> people to acknowledge this? What are they afraid of losing?

>

>

> Anita

>

[Guest guest]

atrekkie, I dont know if you know it but this forum is made up of a

number of people, most of whom are parents, who are incredibly

intelligent.

I dont know what your motive is being here, but if it is

to " convert " ? i am sure you must feel by now that you are wasting

your time.

However to put the shoe on the other foot, i will give you a

standing invitation to come to my home anytime you like to live with

our family and our 4 year old " autism " . I dont know if you have

children, or what age you are, but i would love for you to watch and

experience for just one day, what autism, not aspergers, not PddNOS,

but autism, really is, the kind of autism that clearly you have NOT

been talking about. In addition, when you arrive, the first stop

will be to the local " mental hospital " where those adult persons

with autism have been dumped for decades because they may have had

parents who think like you, or who thought that autism is such an

occasion for celebration, that their precious children were just too

good for society??

as evangelists go, I have encountered much better ones than you and

it is my hope (because I think you are unsure of your own

convictions) that you will shuffle off the blinkers you currently

seem to be wearing, or have been imposed upon you, and treat this

board as a venue for knowledge.

> >

> > No that's absolutely not the case, my youngest son does not have

a

> choice to accept or not accept who he is or what he has, there is

very

> little choice in his life, period.

>

> If he is unaware of what autism means then no he wouldnt have a

choice.

>

> > As for stress levels being equal for parents of HFA and Severe

> autism, that is also wrong.

>

> Try saying that to the parents of our support groups. Both sets

have

> equal stress whether or not they have HFA or severe autistic kids.

>

> > My boys are at either end of the spectrum, there is no

comparison in

> stress levels.

> > With a more severe child every minute of the day can be

stressful,

>

> When i was at my worst then that was the case. For one year i

lived in

> a constant state of anxiety, i had to be prompted to do anything.

My

> carer ended up with severe depression as a result, she was my gran

as

> mum couldnt cope (or understand) with me.

>

> > my youngest needs constant 24/7 watching, he has escaped onto the

> roof of the house in the past, he has flooded the house, he has

harmed

> himself etc.

>

> i went through that stage where i was self harming every day for

weeks

> on end.

>

> > I am limited in where I can take him, he can go into rage cycle

in

> the blink of an eye and in any location,

>

> Sounds like thats his only form of communication. If he could

> communicate his needs to you in another way, would that make it

easier

> to take him out? i have been through that 2 before gf/cf diet.

>

> > he has head butted my car windscreen clean through.

>

> > He cannot tell me when he is in pain, so every rage needs to be

> carefully considered as he could have appendicitis or just be

> understimulated, no way of knowing. I could go on and on.

>

> i can see what you mean but isnt an adult having a meltdown where

they

> are shouting at you for hours on end just as stressful?

>

> > My HFA son causes stress in as much as I feel his pain and

> isolation, I worry for his future, I worry about his state of mind,

> but is not constant, all the time and we can have really good

quality

> time communicating in the normal way.

>

> There is no such thing as a " normal way " . There is a housing scheme

> that can help if you can get the home support 1st.

>

> > There really is no comparison living with a very severe child

is

> > unbelievably draining, alongside the worrying and of course the

> emotional cost of loving your child to bits and watching everything

> being a struggle for him, and I mean everything.

>

> If there is no comparison then the stress levels must be the same

as

> you cannot compare the situations.

>

> > I am saddened and concerned for my HFA sons future but I lose

sleep

> at night and am frantic thinking about my severe childs future.

>

> i do worry to an extent about my future. i am unable to find

suitable

> work for myself, even if i did then i would have to earn £500 a

month

> to stay in my home.

>

> is

> > Vicky

> >

>

[Guest guest]

I would just quickly add that not all Aspergers is 'mild' and to

generalise that it is is divisive and unhelpful to people whose

Aspergers isnt mild.

My 'Aspergers' son scores 19 (out of 23) on the ADOS test, which is

higher than a lot of kids diagnosed with the label 'autism'. He has

been out of school for nearly 3 years and those of you who have been

around a while will remember the other dreadful test results from

the Ed Psych about morbid, disordered and suicidal thoughts, and our

experiences with self-harm etc.

In RDI terms, he is severely disabled by his problems with rigid

thinking, which impact upon every area of his life. So whilst he

may be able to speak and be of average intelligence, all that

actually counts for nothing if his autism means he will not be able

to be happy in life.

Worse still, his intelligence means he actually knows that.

It would be more meaningful to have a diagnostic system that took

into account autism's impact upon quality of life, rather than

getting hung up on the labels of 'autism'

and 'aspergers'..............that way it would be easier to see

which people needed what help.........less impact on quality of

life, less help needed.

Quick note to is - I dont think people on this list are saying

that anyone should have any intervention imposed upon them (I hope

not - I havent picked that up from reading this thread). It should

be a matter of choice - but of course that doesnt work for children,

who have decisions about all areas of their lives made for them by

parents all the time. I hope you would agree that parents

should have the right to treat their own children?

Zoe

> > >

> > > No that's absolutely not the case, my youngest son does not

have

> a

> > choice to accept or not accept who he is or what he has, there

is

> very

> > little choice in his life, period.

> >

> > If he is unaware of what autism means then no he wouldnt have a

> choice.

> >

> > > As for stress levels being equal for parents of HFA and Severe

> > autism, that is also wrong.

> >

> > Try saying that to the parents of our support groups. Both sets

> have

> > equal stress whether or not they have HFA or severe autistic

kids.

> >

> > > My boys are at either end of the spectrum, there is no

> comparison in

> > stress levels.

> > > With a more severe child every minute of the day can be

> stressful,

> >

> > When i was at my worst then that was the case. For one year i

> lived in

> > a constant state of anxiety, i had to be prompted to do

anything.

> My

> > carer ended up with severe depression as a result, she was my

gran

> as

> > mum couldnt cope (or understand) with me.

> >

> > > my youngest needs constant 24/7 watching, he has escaped onto

the

> > roof of the house in the past, he has flooded the house, he has

> harmed

> > himself etc.

> >

> > i went through that stage where i was self harming every day for

> weeks

> > on end.

> >

> > > I am limited in where I can take him, he can go into rage

cycle

> in

> > the blink of an eye and in any location,

> >

> > Sounds like thats his only form of communication. If he could

> > communicate his needs to you in another way, would that make it

> easier

> > to take him out? i have been through that 2 before gf/cf diet.

> >

> > > he has head butted my car windscreen clean through.

> >

> > > He cannot tell me when he is in pain, so every rage needs to be

> > carefully considered as he could have appendicitis or just be

> > understimulated, no way of knowing. I could go on and on.

> >

> > i can see what you mean but isnt an adult having a meltdown

where

> they

> > are shouting at you for hours on end just as stressful?

> >

> > > My HFA son causes stress in as much as I feel his pain and

> > isolation, I worry for his future, I worry about his state of

mind,

> > but is not constant, all the time and we can have really good

> quality

> > time communicating in the normal way.

> >

> > There is no such thing as a " normal way " . There is a housing

scheme

> > that can help if you can get the home support 1st.

> >

> > > There really is no comparison living with a very severe child

> is

> > > unbelievably draining, alongside the worrying and of course the

> > emotional cost of loving your child to bits and watching

everything

> > being a struggle for him, and I mean everything.

> >

> > If there is no comparison then the stress levels must be the

same

> as

> > you cannot compare the situations.

> >

> > > I am saddened and concerned for my HFA sons future but I lose

> sleep

> > at night and am frantic thinking about my severe childs future.

> >

> > i do worry to an extent about my future. i am unable to find

> suitable

> > work for myself, even if i did then i would have to earn £500 a

> month

> > to stay in my home.

> >

> > is

> > > Vicky

> > >

> >

>

[Guest guest]

Well said Sharon

Zoe

>

> I've learnt from is too and I think she has shown some bravery

in

> seeking to explain her own and other's points of view and in

replying to mails some

> of which have appeared at times to have made very personal

comments about

> her intention, integrity and abilities - how can someone presume

that is

> doesn't " get it " because of her Aspergers - or that she hasn't

suffered in

> some of the same ways as others who are severely affected - how

do you know?

>

> I have a " high functioning " son - not diagnosed as such as he's

diagnosed

> with Childhood Autism - he is verbal and has an average IQ so is

h.f.

> according to some definitions but I totally agree it is all

muddled and unhelpful.

> He's a 5 years old who regularly talks about wanting to kill

himself and

> " start again as a new baby " , who was very delayed in talking, has

severe faecal

> impaction and gut issues, who has huge sensory issues, massive

anxiety, is

> terrified of many aspects of every day life, hypersensitive to

most food,

> chemicals etc., who did poo on the floor, who is still in

nappies, who used to be

> awake for hours at night, who had no eye contact, who head

banged, who used to

> stim all day, who was very aggressive, who had to be policed day

and night

> etc. etc.- who is to say where he would have been on the spectrum

without

> bio-medical and other interventions we've used?

>

> Through what we have learnt through our experiences with our son,

my husband

> believes he has Aspergers - not because he wants to lay claim to

being a

> second Einstein or be " fashionable " - dear God, why??? - but

because for the

> first time he can understand something about who and how he is who

he is, why he

> has such huge anxiety, has allergies, gut problems, limited social

skills,

> massive social anxiety, sensory issues, " sees " words as colours

and and music

> as shapes and a million other aspects of himself he never

understood before.

> In the light of all the mails on this forum, I asked him how he

felt and if

> he would want to change if he could take something - he said he

can't

> envisage changing now as he has been as he is all his life and it

is now " him " and

> he has learned coping strategies to get by. He obviously doens't

feel this

> way about his son as he is 100% committed to what we are doing

biomedically to

> heal him and believes as I do that autism is treatable - he

spreads that word

> at every opportunity as do I.

>

> I've always loved this forum for its supportive and open and non-

judgemental

> nature. I know I can never understand how it feels to parent a

child who is

> severely affected but I hope I still have a place here and that

others do

> too - the huge knowledge and generositiy of spirit of those who

post here has

> helped our family enormously. I've never worried before that I

may not be

> intelligent enough to be on here, I didn't realise that was a

factor - although I

> have marvelled at the indepth and detailed knowledge of many who

do post on

> the forum.

>

>

> sharon x

>

[Guest guest]

>

> I would just quickly add that not all Aspergers is 'mild' and to

> generalise that it is is divisive and unhelpful to people whose

> Aspergers isnt mild.

Dear Zoe and others,

In looking at my own post I can see how people could read it as

divisive. That is not my intention. In fact, I think my view of

these things is very inclusive. I happen to believe that every child

I've known with a peanut allergy, cancer, asthma, ADHD, Asperger's,

arthritis, or learning disabilities (and many other conditions too)

ended up with those problems for very similar reasons to why my son

has autism: a diet that couldn't protect them; overwhelming

environmental assaults; and a selfish, short-sighted society that

betrayed them.

I am not trying to say that a particular child with an Asperger's

diagnosis is less severely affected than my own son who would receive

a diagnosis of autistic disorder. I know that may not be true,

especially now that we've seen improvements with biomedical

interventions. What I am trying to say is that when we have been

saddled with words that actually have fairly clear meanings, we need

to try to use them carefully because the public's view of our

children DOES matter, in terms of services, research, and how we're

treated when we're out and about. And from a general perspective,

not looking at individual children, I think that one can say it is

much better to have language than to not have language, a core

difference between autistic disorder and asperger's.

I am not by any means trying to say that people whose children are

less severely affected should not be on this board. Not at all!! I

would welcome anyone who wanted to help their child biomedically,

regardless of diagnosis or lack of, and again, I am referring to all

of the problems that I've mentioned above and more.

What I am trying to do though is stop the growing acceptance that

autism IS Bill Gates/Einstein/people who have families, jobs, and the

ability to write eloquent letters to newspapers. The differences

between autistic and asperger's (for example, language and curiosity

in the environment) are significant--I am talking about the

diagnostic criteria here, not each individual child. The differences

between whatever Bill Gates may or may not be and every last child on

this board are even greater, I would suspect. Pretending that those

differences do not exist harms our efforts to help our children at

certain times. And so, for some conversations, we must acknowledge

and respect them. For other conversations, for example the kind we

often have on this board when we're talking about the efficacy of

MB12 for example, those differences are immaterial, as are the

differences between eczema and autism.

What I am also trying to stop is the hypothesis put forward by some

people that offering biomedical treatments to people with autism (or

any of the other things I have mentioned) will somehow eradicate who

they are. I asked at autism-mercury once whether recovered kids had

lost any of their substantial intellect or special skills and not one

parent responded that they had. In fact, the opposite. Parents

responded that kids were able to use their intellect and skills in

ways that were not possible before biomedical interventions.

I realize that this would be different for adults, who have lived

with things being different for a very long time, and I certainly

respect any adult's decision to not trade what they know and do well

with, for the complete unknown. I make the same decisions for myself

in regard to other issues. But this decision, on the part of an

adult who is living happily, is so far removed from the situation of

a child with autism that comparing them is entirely unhelpful. I

would also say that having someone take adrenal support so that they

can function better without anxiety and panic attacks is running the

risk of eradicating who they are is ridiculous.

I hope I've been able to communicate how I am by no means trying to

diminish any child's situation, or exclude any child from my efforts

to change how things are now for something better. I am, in fact,

doing my best to advocate for all children, while not losing sight of

the fact that some kids genuinely need more help than others in a

world of finite resources. And when we need to deal with the public

using labels that I don't think we'll be able to change in a

meaningful way any time soon, it is very important that those labels

are not watered down so that autism, autistic, or asperger's EQUALS

Bill Gates.

Anita

[Guest guest]

>

> Well this chain of posts has left me feeling really really angry,

and then I thought, is has Aspergers so of course she cannot get it.

Excuse me i may be an aspie but i am still intelligent. What i " get "

is that some parents here are ashamed of the term " autism " , they want

to irradicate this disease to make their kids so called normal. There

is no such thing as normal. When people talk about my friends as

though they are stupid i have to stick up for them. You make me angry

as you are not prepared to realise that kids dont want to be changed.

Some of us are happy the way we are.

>I think that the only way she is going to get it is to visit some of

us with children who are truly low functioning due to autism, which we

> know has a clear medical basis, and see for herself what it is like

for the children and the families.

One of my closest friends has a low functioning autie, she fought hard

to get him a place in Devon where he lives. In fact i was trying to

suggest places where he could go.

> And even then she may not get it.

Get what exactly? That you despise difference?

> Sorry if this offends from being totally un-PC but quite frankly

> hearing all the drivel about it being " their choice whether they

want to be better or not "

It can be thier choice depending on the level of awareness. i can

choose to meet society half way or to stress myself out trying to be

perfect. Personally i prefer the former for obvious reasons. i havent

said any of your comments are drivel so dont insult me by saying mine

are please.

> and comparing our children to people who have social difficulties or

depression

Er no thats not what i was doing at all. You are not getting what i am

saying.

> or " if they were biomedically treated then they would no longer be

Einstein "

I didnt say that i said their uniquie talents may dissappear as well.

EG if i was cured then would i still have a natural empathy for

parents of autie/aspie children and other auties and aspie?

> is just so outraging to my whole being that I do not care one bit if

I am being un-PC or offend anywone.

That is sad that you dont care if you offend the very people you wish

to help.

>

> Celia

>

> (with a son who could be Einstein if he did not shit on the floor

and play with it - and is still in nappies at 14 - and has no concept

> whatever of consequences for actions - and cannot speak - and needs

FCT to even use a computer!!!)

Dont swear please it offends me, i didnt say all auties would be

enstein just some, he can talk as he uses FCT

is (annoyed)

[Guest guest]

Hello

>

> atrekkie, I dont know if you know it but this forum is made up of a

> number of people, most of whom are parents, who are incredibly

> intelligent.

Yes i do know that.

>

>

> I dont know what your motive is being here, but if it is

> to " convert " ? i am sure you must feel by now that you are wasting

> your time.

Nope its to offer an insight into some of the autistic behaviours

based on observations of myself and other peoples insight. i am trying

to eliminate my sensory issues so it doesnt hurt my ears to type. Im

trying to improve my memory with fish oils, im trying nutritional

approaches to help my aspergers.

>

> However to put the shoe on the other foot, i will give you a

> standing invitation to come to my home anytime you like to live with

> our family and our 4 year old " autism " .

Interesting idea, i may take that up one day. So i would come and see

what a day is like with your son/daughter

> I dont know if you have children,

No i dont,

> or what age you are,

28

> but i would love for you to watch and experience for just one day,

what autism, not aspergers, not PddNOS, but autism, really is, the

kind of autism that clearly you have NOT been talking about.

Like i have said before i have friends who have kids with severe

autism. One parent has a son (now 19) who walks around the room at our

youth club taping straws on people. His brain is 2 slow to process

what others are saying to him. His mum had trouble finding somewhere

for him to move to and spent nearly a year searching for places. He

was refused at the other places as he might run away. He had seizures

that were uncontrollable at the time. He is now settled in Devon in a

group home and is happy there. His mum has put him on gf/cf but its

hard to gauge the success rate of it for him as cross contamination

hasnt been eliminated.

> In addition, when you arrive, the first stop will be to the local

" mental hospital " where those adult persons with autism have been

dumped for decades because they may have had parents who think like you,

You mean who thought " there is nothing wrong with my son or daughter "

or do you mean " i cannot help my son or daughter " . i know of parents

in a cpunty near to you who would envy those parents as they have been

trying for years to get thier son on section. i dont have severe

mental health problems so comparing me to these parents and kids is

irrelevant.

> or who thought that autism is such an occasion for celebration, that

their precious children were just too good for society??

It depends on the person, if they clearly have mental health issues

then that needs treatment. i am on biomedical interventions. i am on

the fence.

>

>

> as evangelists go, I have encountered much better ones than you

Well im not an evangelist at all, just not every part of

autism/aspergers needs to be corrected.

> and it is my hope (because I think you are unsure of your own

> convictions)

What that some of us dont want treatment? Well its true some of us HFA

and asperger people dont want to be cured, fair enough parents wish to

do all they can to help thier kids. If a kids unhappy (as the ones in

the " psyc hospitals " clearly are then biomed is the best way forward.

> that you will shuffle off the blinkers you currently seem to be

wearing, or have been imposed upon you, and treat this board as a

venue for knowledge.

I dont have any blinkers, i know of people who dont wish to be cured

or treated, they are my friends and fortunately most of them are happy

the way they are. Their parents are in most cases happy with their

kids, only a few of those kids are in denial.

This is a venue for knowledge. Its not a place to put down people who

are autistic, whether in the paper or on here.

is

[Guest guest]

Hello Sass and Rem

>

> Sass and Rem wrote:

> >

> > In defence of is, she has been on this site for a long time

and she is treating herself. SARA

Thank you, im pleased someone pointed this one out. Yes i am

gf/cf/aspartame f/msg f low phenol. i am on 5htp, mag, cal, b6, milk

thistle, fish oils. i have also written a literature review on the

subject of diet and autism.

is

[Guest guest]

HEllo

> >

> > In defence of is, she has been on this site for a long time and

> > she is treating herself. SARA

is

[Guest guest]

Hello

>

> I would just quickly add that not all Aspergers is 'mild' and to

> generalise that it is is divisive and unhelpful to people whose

> Aspergers isnt mild.

Do you mean " its not all mild autism " or " its not mild aspergers " ?

>

> My 'Aspergers' son scores 19 (out of 23) on the ADOS test, which is

> higher than a lot of kids diagnosed with the label 'autism'. He has

> been out of school for nearly 3 years and those of you who have been

> around a while will remember the other dreadful test results from

> the Ed Psych about morbid, disordered and suicidal thoughts, and our

> experiences with self-harm etc.

i have had those before, im pleased they havent resurfaced in ages.

>

> In RDI terms, he is severely disabled by his problems with rigid

> thinking, which impact upon every area of his life. So whilst he

> may be able to speak and be of average intelligence, all that

> actually counts for nothing if his autism means he will not be able

> to be happy in life.

This has happened to me when ive been at my worse. The main causes

were demorphine addiction and benzoate medication. i wish everyones

problems could be solved as easily as this.

>

> Worse still, his intelligence means he actually knows that.

Ah yes, the " too intelligent for their own good " issue. This is where

our vunerability comes in.

>

> It would be more meaningful to have a diagnostic system that took

> into account autism's impact upon quality of life, rather than

> getting hung up on the labels of 'autism'

> and 'aspergers'..............that way it would be easier to see

> which people needed what help.........less impact on quality of

> life, less help needed.

Good idea, i totally agree with that.

>

> Quick note to is - I dont think people on this list are saying

> that anyone should have any intervention imposed upon them

This is what my friends are scared of. If i could reassure them that

no autistic/aspie is pushed into having interventions, then they may

not be so against biomedical groups.

> (I hope not - I havent picked that up from reading this thread). It

should be a matter of choice - but of course that doesnt work for

children, who have decisions about all areas of their lives made for

them by parents all the time.

Put it this way, if kids started saying to thier parents " i dont want

that medicine mommy? " Then would parents be ok about it? Thats the

issue here.

> I hope you would agree that parents should have the right to

treat their own children?

To help thier own kids be happy and healthy yes, to make them perfect

or so called normal no we dont want that.

is

>

> Zoe

[Guest guest]

Hello

>

> I can't imagine that anyone would ever think anything different of

you, Anita. I think the debate was a healthy one but it took a pretty

> unhealthy turn at the end and just happened to be everybody versus

> is. I hope is is still out there and still feels part of

this community. SARA x

i am still part of this community but i am offended by the person who

thinks " you cannot understand where we are coming from as you are an

Asperger person " or the one who thinks i am excluding those who

want/need help as its not the case. Or the people who swear in their

posts or dont care who they annoy.

is (who does care if she upsets people and is not here to do so)

[Guest guest]

is,

I am not being difficult, but I am having a lot of trouble seeing the

coherence in this whole discussion.

If you treat yourself, presumably you think it is okay for others to

treat. It seems like you are saying that you agree that it is

sensible to treat physical symptoms, but that you do not approve of

attitudes that you are attributing to some people here concerning a

lack of some sort of acceptance of autistic/aspergers people.

However, I haven't seen anyone post anything that says anything like

this - in the posts I have read people have been talking about the

physical misery their children are in, and the stresses on their

families of coping with these problems, and I can't recall anyone

saying they were ashamed and trying to get rid of some essence of

different-ness in their child(ren) by trying to heal their guts, or in

any other way.

I can't work out what the disagreement actually is - perhaps you can

clarify without attributing attitudes to people which they have not

actually displayed in writing here.

I don't have any hostility toward you, and don't see any reason why

you wouldn't be welcome here, but apart from the sort of niggling

back-and-forths, whose overall stated attitude here are you actually

opposing?

> . Yes i am

> gf/cf/aspartame f/msg f low phenol. i am on 5htp, mag, cal, b6, milk

> thistle, fish oils. i have also written a literature review on the

> subject of diet and autism.

>

> is

>

[Guest guest]

Hello

>

> I've learnt from is too and I think she has shown some bravery

in seeking to explain her own and other's points of view and in

replying to mails some of which have appeared at times to have made

very personal comments about her intention, integrity and abilities -

how can someone presume that is doesn't " get it " because of her

Aspergers - or that she hasn't suffered in some of the same ways as

others who are severely affected - how do you know?

That was exactly my point thanks.

>

> I have a " high functioning " son - not diagnosed as such as he's

diagnosed with Childhood Autism - he is verbal and has an average IQ

so is h.f. according to some definitions but I totally agree it is all

muddled and unhelpful.

IQ testing is innaccurate in autistic/aspergers people.

> He's a 5 years old who regularly talks about wanting to kill himself

and " start again as a new baby " , who was very delayed in talking, has

severe faecal impaction and gut issues, who has huge sensory issues,

massive anxiety, is terrified of many aspects of every day life,

hypersensitive to most food, chemicals etc., who did poo on the floor,

who is still in nappies, who used to be awake for hours at night, who

had no eye contact, who head banged, who used to stim all day, who was

very aggressive, who had to be policed day and night etc. etc.- who is

to say where he would have been on the spectrum without bio-medical

and other interventions we've used?

i was delayed in walking, had severe hyperaccusis (but its better now

i avoid aspartame in my diet, have had severe anxiety, i was scared of

daily life and my future, i still have sleep issues with the 5htp, my

eye contact is still fleeting even with those i know well, ive head

banged before, ive attacked members of my family due to benzoates, ive

been suicidal and ive run away many times before. ive had constipation

issues that were really bad pre gf/cf diet.

Now all i have are sleep issues and hyperaccusis, occasionally i talk

over others and my eye contact is still not as good as it could be.

Even a simple task as getting a bus can be hard as i cannot tell where

the front or the back of the queue is, then if i can read what the bus

number is, i get stressed and annoyed at drivers being late. Pre

biomed it would have annoyed me the whole lesson. Now im keeping a

record to write to my bus company about. i will need help writing this

letter.

>

> Through what we have learnt through our experiences with our son, my

husband believes he has Aspergers - not because he wants to lay claim

to being a second Einstein or be " fashionable " - dear God, why??? -

Exactly we dont think aspergers is fashionable or the in thing. We

dont think all aspies are Einsteins either.

> but because for the first time he can understand something about who

and how he is who he is, why he has such huge anxiety, has allergies,

gut problems, limited social skills, massive social anxiety, sensory

issues, " sees " words as colours and and music as shapes and a million

other aspects of himself he never understood before.

Im pleased your husband has found some answers and a name for how he is.

> In the light of all the mails on this forum, I asked him how he

felt and if he would want to change if he could take something - he

said he can't envisage changing now as he has been as he is all his

life and it is now " him " and he has learned coping strategies to get by.

This is how most of my friends feel that its a bit like cheating. The

puzzle of " how do i cope with autism/aspergers " has been solved when

they are cured.

> He obviously doens't feel this way about his son as he is 100%

committed to what we are doing biomedically to heal him and believes

as I do that autism is treatable - he spreads that word at every

opportunity as do I.

Agreed and understood, its treatable but not always needed.

>

> I've always loved this forum for its supportive and open and

non-judgemental nature. I know I can never understand how it feels to

parent a child who is severely affected but I hope I still have a

place here and that others do too - the huge knowledge and generositiy

of spirit of those who post here has helped our family enormously.

I've never worried before that I may not be intelligent enough to be

on here, I didn't realise that was a factor

It shouldnt be a factor and people shouldnt state the obvious of

" there are parents and intelligent peoiple on here " as one posted did.

- although I have marvelled at the indepth and detailed knowledge of

many who do post on the forum.

is

>

>

> sharon x

[Guest guest]

Hi -

I wasn't intentionally trying to be funny, but I guess the tie people

down thing was sort of silly. :-)

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 thought it was a fair question

given all the discussion this gets.

I would be happy to join with those opposing such people, if someone

could tell me who they are so that I can investigate their position.

>

> Good ?, and I don't know if you meant it to be...but it made me

laugh out loud, thanks.

>

>

>

[Guest guest]

Hello

>

>

> is,

>

> I am not being difficult, but I am having a lot of trouble seeing

the coherence in this whole discussion.

>

> If you treat yourself, presumably you think it is okay for others to

> treat. It seems like you are saying that you agree that it is

> sensible to treat physical symptoms, but that you do not approve of

> attitudes that you are attributing to some people here concerning a

> lack of some sort of acceptance of autistic/aspergers people.

I was hoping that forced intervention wasnt used. i know of parents

who hold their kids down to give them medicine. I hope those kids are

being treated as they are miserable. i have nothing against people

treating those who have a choice but if they dont have a choice or

they are happy with who they are then why change?

>

> However, I haven't seen anyone post anything that says anything like

> this - in the posts I have read people have been talking about the

> physical misery their children are in, and the stresses on their

> families of coping with these problems, and I can't recall anyone

> saying they were ashamed and trying to get rid of some essence of

> different-ness in their child(ren) by trying to heal their guts, or

in any other way.

Ok, if this is about kids who are miserable and getting treatment to

be happier then thats fair enough. i was concerned about forced

interventions. i am all for healing guts as my belly pains have gone

completely by following the gf/cf diet.

>

> I can't work out what the disagreement actually is - perhaps you can

> clarify without attributing attitudes to people which they have not

> actually displayed in writing here.

>

> I don't have any hostility toward you, and don't see any reason why

> you wouldn't be welcome here, but apart from the sort of niggling

> back-and-forths, whose overall stated attitude here are you actually

> opposing?

Anyone who wishes to use forced intervention as they are ashamed of

thier kids.

is

>

>

[Guest guest]

Hello

>

>

> Hi -

>

> I wasn't intentionally trying to be funny, but I guess the tie

people down thing was sort of silly. :-)

>

> 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 thought it was a fair question

> given all the discussion this gets.

Being made to talk when a litewritter is another form of alternative

communication. Being treated for obsessive behaviour when it doesnt

hurt anyone. Being forced to take medicines without knowing what they

are for or what they can help. We dont want to be into fashion, or

dating (some dont), or doing things that are age appropriate, or work

full time, or have to put up with sensory overload.

>

> I would be happy to join with those opposing such people, if someone

> could tell me who they are so that I can investigate their position.

Thats what they wish for. i can ask them what else they want as well.

is

>

>

[Guest guest]

is,

I do not think you are understanding my question. I am NOT asking

what autistics/aspergers people want. Many of us have a big list of

things that we do not have that we want, my question is not about this.

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.

All I want is this simple answer to understand where the threat to

autistics lies.

>

> Being made to talk when a litewritter is another form of alternative

> communication. Being treated for obsessive behaviour when it doesnt

> hurt anyone. Being forced to take medicines without knowing what they

> are for or what they can help. We dont want to be into fashion, or

> dating (some dont), or doing things that are age appropriate, or work

> full time, or have to put up with sensory overload.

> >

> Thats what they wish for. i can ask them what else they want as well.

[Guest guest]

> I was hoping that forced intervention wasnt used. i know of parents

> who hold their kids down to give them medicine. I hope those kids aare

> being treated as they are miserble. i have nothing against people

> treating those who have a choice but if they dont have a choice or

> they are happy with who they are then why change?

Maybe this is stating the obvious, but children usually don't and (in

my opinion) usually shouldn't have complete choices, not in the

fullest sense of the word. My NT nephew would have easily incinerated

himself several times over if his parents had given him the full

panoply of choices that adults enjoy.

Likewise, he would have chosen not to ride in his car seat EVER and

there is a pretty good chance he would be dead now since they had a

serious crash when they were hit by a drink-driver on the motorway.

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. Sometimes that means holding their kids down and giving

them medicine. Sometimes that means prying a sharp knife that they

want to play with from their hands. I don't see how a 3 year old is

any better equipped to decide whether they should have biomedical

treatment than whether they should play with a sharp knife.

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.

>

>. i was concerned about forced

> interventions.

> Anyone who wishes to use forced intervention as they are ashamed of

> thier kids.

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. If someone here said something like this,

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

[Guest guest]

Hello

>

>

> > I was hoping that forced intervention wasnt used. i know of

parents who hold their kids down to give them medicine. I hope those

kids are being treated as they are miserble. i have nothing against

people treating those who have a choice but if they dont have a choice

or they are happy with who they are then why change?

>

> Maybe this is stating the obvious, but children usually don't and

(in my opinion) usually shouldn't have complete choices, not in the

> fullest sense of the word. My NT nephew would have easily

incinerated himself several times over if his parents had given him

the full panoply of choices that adults enjoy.

Of course when their lives are in danger then thats a different

matter. But we are talking about interventions for autism here.

>

> Likewise, he would have chosen not to ride in his car seat EVER and

> there is a pretty good chance he would be dead now since they had a

> serious crash when they were hit by a drink-driver on the motorway.

Again another safety protocol which is not an autism intervention.

>

> 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. If only us

autisics/aspergers didnt have such strong smell and taste, i

understand that it has to be done in some cases.

> Sometimes that means prying a sharp knife that they want to play

with from their hands.

Thats different, NT children need to be taught this as well.

> I don't see how a 3 year old is any better equipped to decide

whether they should have biomedical treatment than whether they should

play with a sharp knife.

i didnt mention ages, but what about a 10 year old? Or a kid that

feels they wont be accepted at their autism clubs.

>

> 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.

> >

> >. i was concerned about forced interventions.

>

> > Anyone who wishes to use forced intervention as they are ashamed

of their kids.

>

> 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.

> If someone here said something like this,

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

i thought it was implied.

is

>

>

>

[Guest guest]

Hello

>

>

> is,

>

> I do not think you are understanding my question. I am NOT asking

> what autistics/aspergers people want. Many of us have a big list of

> things that we do not have that we want, my question is not about this.

>

> 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.

>

> All I want is this simple answer to understand where the threat to

> autistics lies.

>

>

[Guest guest]

Hello

>

> All I want is this simple answer to understand where the threat to

> autistics lies.

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

doing this.

is

>

>

[Guest guest]

Hello

>

> I don't know when it was suggested that Asperger children don't have

issues, I responded to is comment that the stress levels were the

same among parents of HFA and Severe, I disagree.

How many heart attacks have you endured as a result of caring for me?

How many letters have you written to various departments that bounce

you from pillar to post like a bouncing ball and dont care about you?

How many times have you had to talk your asperger/autistic kid out of

their ruminating thoughts? Did you find suitable respite care easily?

Did you then find out it was unsuitable and you could not get a break?

How many times have you heard your kid appologise for being born? or

that they feel so worthless. Well my gran had to do that

singlehandedly, dont tell me that caring for a LFA is harder than an

Asperger.

> I not only have two children at either end of the spectrum I also

have 2 brothers with Aspergers and a debatable Mother, and can say

absolutely categorically that my lower functioning child is way, way

more stressful.

I know 2 parents who would disagree with you there.

> The kind of stress is nerves stretched to absolute breaking point,

wondering if we can all get through another day, by we I include my

HFA son, who also has to experience a very highly charged atmosphere

as well as living with his own condition.

Yes i know my gran had to go through the same when i was home with her.

> In the early days when my son would bang his head from the minute he

woke up and scream constantly, smear his steady flow of diarrhoea all

over the walls and himself 4,5, and 6 times a day, constantly try and

get out of windows, run into roads, smell everything and eat nothing,

I honestly had suicidal thoughts myself.

My gut pains made me so hyper that you could not shut me up on a bad

day, even at night time, i would follow people around with my monologues.

> The turning point for me and my family was meeting Mandi on line a

good few yrs ago now and realising there was something out there, this

is not the way it had to be.

The turning point was studying the subject and qualifying with a DipHE

in diet and health this year. This was something i couldnt do without

biomed.

> I have no interest in curing people who do not desire it,

Me and my friends will be relieved to hear this.

>equally I do not want these same people misrepresenting autism as

some kind of gift and therefore undermining everything our children go

through be they Aspergers or Autism.

Whats so bad about accepting their autism? These are happy people who

often work and have fulfilling lives. They consider their

autism/aspergers a gift. Not all autism and aspergers is a gift.

> This debate is going round in circles but certainly isn't a

witchhunt on is or anyone else, people have said they have learnt

much from is and that is great, I would like to think she feels

the same.

it does feel like a witch hunt at times. People saying we think all

autism is a gift (we dont), that we are against biomed (only those who

dont understand biomed feel this way), that we are against parents

helping their kids (we're not), that caring for an asperger person is

easier than caring for a LFA (its equally as hard in different ways)

is

> Vicky

>