Re: Don't Mourn For Us / By: Jim Sinclair

September 19, 2003

I'm sorry, but I think this is a crock. There IS a normal child hidden behind

my little autistic one. How else can a very normal, verbal toddler with great

social skills and 3-4 word sentences turn into a completely nonverbal child

with no eye contact or desire for socialization who sits in front of Disney

videos, rocking, and grinding her teeth? Give me a break, Jim - you may be right

in talking about HFZ/Aspergers but certainly not about kids who regressed from

metals poisoning or immune system shock from over-vaccination!

September 19, 2003

Well stated - the tide of autistic people as being considered

some type underserved " minority culture " is enough to gag a maggot. All

one needs to do is to look at the lab workup of this " underserved

minority " to realize that autism is truly a disease state. Any one who

would suggest otherwise is wrong or lieing.

Re: [ ] Don't Mourn For Us / By: Jim Sinclair

I'm sorry, but I think this is a crock. There IS a normal child hidden

behind

my little autistic one. How else can a very normal, verbal toddler with

great

social skills and 3-4 word sentences turn into a completely nonverbal

child

with no eye contact or desire for socialization who sits in front of

Disney

videos, rocking, and grinding her teeth? Give me a break, Jim - you may

be right

in talking about HFZ/Aspergers but certainly not about kids who

regressed from

metals poisoning or immune system shock from over-vaccination!

September 19, 2003

Well, if the autistic kids that I know/work with end up being able to

write an article someday, then he's right-- I won't mourn for them.

But I *will* continue to mourn for the children who used to sing

songs and then suddenly stopped, and started hitting themselves in

the face, etc. I will mourn for these children and the mothers that

tell me it is as if someone came in the night and stole their child

from them. I will not mourn for those like Jim, who have gone on to

live what appears on the surface to be a full life, but I will mourn

for those autistics who do not share his fate. I would say the

stress of the mother that I am thinking about right now, doesn't stem

so much from thinking about what is normal and what is her child, but

rather the stress of having to wipe s & i# off of walls while still

trying to tend to another child, keep house, etc. I think any mom of

a child with severe autism knows what this stress is like. They're

not worried about " what is normal " -- they're worried about-- can I

catch him before he does this/that because if I don't then I'll have

hell to pay later. People who are high functioning AS can say that

they are sick and tired of all the attention being given to the

severe autistics (and yes, an AS adult did say that), but I can say

that I am sick and tired of the attention/whining that comes along

with the " recognize me, me, me " that seems to come through when I

read an article like this. No Jim, I won't mourn for you. Go on

with your life and be happy. I wish you the best.

W

>

> > " > > I invite you to look at our autism, and look at your grief,

from our

> > perspective:

September 19, 2003

Suddenly someone is there at the station, the girl with kaleidoscope

eyes.... And they all lived happily ever after. Would you care for

some more acid laced marijuana?

>

> > " Don't Mourn For Us "

> >

> > By: Jim Sinclair

> >

> > This article was published in " Our Voice " . The newsletter of

Autism

> > Network International

> >

> > Volume 1, Number 3, 1993.

> >

> > Parents often report that learning their child is autistic was

the most

> > traumatic thing that ever happened to them. Non-autistic people

see autism

> > as a great tragedy, and parents experience continuing

disappointment and

> > grief at all stages of the child's and family's life cycle. But

this

> > grief does not stem from the child's autism in itself. It is

> > grief over the loss of the normal child the parents had hoped and

expected

> > to have. Parents' attitudes and expectations, and the

discrepancies

> > between what parents expect of children at a particular age and

their own

> > child's actual development, cause more stress and anguish than the

> > practical complexities of life with an autistic person.

> >

> > Some amount of grief is natural as parents adjust to the fact

that an

> > event and a relationship they've been looking forward to isn't

going to

> > materialize. But this grief over a fantasized normal child needs

to be

> > separated from the parents' perceptions of the child they do

have: the

> > autistic child who needs the support of adult caretakers and who

can form

> > very meaningful relationships with those caretakers if given the

> > opportunity. Continuing focus on the child's autism as a source

of grief

> > is damaging for both the parents and the child, and precludes the

> > development of an accepting and authentic relationship between

them. For

> > their own sake and for the sake of their children, I urge parents

to make

> > radical changes in their perceptions of what autism means.

> >

> > I invite you to look at our autism, and look at your grief, from

our

> > perspective:

> >

> > Autism is not an appendage. Autism isn't something a person has,

or a

> > " shell " that a person is trapped inside. There's no normal child

hidden

> > behind the autism. Autism is a way of being. It is pervasive; it

colors

> > every experience, every sensation, perception, thought, emotion,

and

> > encounter, every aspect of existence. It is not possible to

separate the

> > autism from the person--and if it were possible, the person you'd

have

> > left would not be the same person you started with.

> >

> > This is important, so take a moment to consider it:

> >

> > Autism is a way of being. It is not possible to separate the

person from

> > the autism. Therefore, when parents say, " I wish my child did not

have

> > autism, " what they're really saying is, " I wish the autistic

child I have

> > did not exist, and I had a different (non-autistic) child

instead. " Read

> > that again. This is what we hear when you mourn over our

existence. This

> > is what we hear when you pray for a cure. This is what we know,

when you

> > tell us of your fondest hopes and dreams for us: that your

greatest wish

> > is

> > that one day we will cease to be, and strangers you can love will

move in

> > behind our faces. Autism is not an impenetrable wall.

> >

> > You try to relate to your autistic child, and the child doesn't

respond.

> > He doesn't see you; you can't reach her; there's no getting

through.

> > That's the hardest thing to deal with, isn't it? The only thing

is, it

> > isn't true. Look at it again:

> >

> > You try to relate as parent to child, using your own

understanding of

> > normal children, your own feelings about parenthood, your own

experiences

> > and intuitions about relationships. And the child doesn't respond

in any

> > way you can recognize as being part of that system. That does

not mean

> > the child is incapable of relating at all. It only

> > means you're assuming a shared system, a shared understanding of

signals

> > and meanings, that the child in fact does not share. It's as if

you tried

> > to have an intimate conversation with someone who has no

comprehension of

> > your language. Of course the person won't understand what you're

talking

> > about, won't respond in the way you expect, and may well find the

whole

> > interaction confusing and unpleasant. It takes more work to

communicate

> > with someone whose native language isn't the same as yours.

> >

> > And autism goes deeper than language and culture; autistic people

are

> > " foreigners " in any society. You're going to have to give up your

> > assumptions about shared meanings. You're going to have to learn

to back

> > up to levels more basic than you've probably thought about

before, to

> > translate, and to check to make sure your translations are

understood.

> > You're going to have to give up the certainty that comes of being

on your

> > own familiar territory, of knowing you're in charge, and let your

child

> > teach you a little of her language, guide you a little way into

his

> > world. And the outcome, if you succeed, still will not be a

normal

> > parent-child relationship. Your autistic child may learn to talk,

may

> > attend regular classes in school, may go to college, drive a car,

live

> > independently, have a career--but will never relate to you as

other

> > children relate to their parents. Or your autistic child may

never speak,

> > may graduate from a self-contained special education classroom to

a

> > sheltered activity program or a residential facility, may need

lifelong

> > full-time care and supervision--but is not completely beyond your

reach.

> > The ways we relate are different.

> >

> > Push for the things your expectations tell you are normal, and

you'll find

> > frustration, disappointment, resentment, maybe even rage and

hatred.

> > Approach respectfully without preconceptions, and with openness to

> > learning new things, and you'll find a world you could never have

> > imagined. Yes, that takes more work than relating to a non-

autistic

> > person. But it can be done--unless non-autistic people are far

more

> > limited than we are in their capacity to relate. We spend our

entire lives

> > doing it. Each of us who

> > does learn to talk to you, each of us who manages to function at

all in

> > your society, each of us who manages to reach out and make a

connection

> > with you, is operating in alien territory, making contact with

alien

> > beings. We spend our entire lives doing this. And then you tell

us that we

> > can't relate.

> >

> > Autism is not death. Granted, autism isn't what most parents

expect or

> > look forward to when they anticipate the arrival of a child. What

they

> > expect is a child who will be like them, who will share their

world and

> > relate to them without requiring intensive on-the-job training in

alien

> > contact. Even if their child has some disability other than

autism,

> > parents expect to be able to relate to that child on the terms

that seem

> > normal to them; and in most cases, even allowing for the

limitations of

> > various disabilities, it is possible to form the kind of bond the

parents

> > had been looking forward to. But not when the child is autistic.

> >

> > Much of the grieving parents do is over the non-occurrence of the

expected

> > relationship with an expected normal child. This grief is very

real, and

> > it needs to be expected and worked through so people can get on

with their

> > lives--but it has nothing to do with autism. What it comes down

to is

> > that you expected something that was tremendously important to

you, and

> > you looked forward to it with great joy and excitement, and maybe

for a

> > while you thought you actually had it--and then, perhaps

gradually,

> > perhaps abruptly, you had to recognize that the thing you looked

forward

> > to hasn't happened. It isn't going to happen. No matter how many

other,

> > normal children you have, nothing will change the fact that this

time, the

> > child you waited and hoped and planned and dreamed for didn't

arrive.

> > This is the same thing that parents experience when a child is

stillborn,

> > or when they have their baby to hold for a short time, only to

have it die

> > in infancy. It isn't about autism, it's about shattered

expectations.

> >

> > I suggest that the best place to address these issues is not in

> > organizations devoted to autism, but in parental bereavement

counseling

> > and support groups. In those settings parents learn to come to

terms with

> > their loss--not to forget about it, but to let it be in the past,

where

> > the grief doesn't hit them in the face every waking moment of

their lives.

> > They learn to accept that their child is gone, forever, and won't

be

> > coming back. Most importantly, they learn not to take out their

grief for

> > the lost child on their surviving children. This is of critical

importance

> > when one of those surviving children arrived at the time the

child being

> > mourned for died.

> >

> > You didn't lose a child to autism. You lost a child because the

child you

> > waited for never came into existence. That isn't the fault of the

autistic

> > child who does exist, and it shouldn't be our burden. We need and

deserve

> > families who can see us and value us for ourselves, not families

whose

> > vision of us is obscured by the ghosts of children who never

lived.

> >

> > Grieve if you must, for your own lost dreams. But don't mourn for

us. We

> > are alive. We are real. And we're here waiting for you. This is

what I

> > think Autism Societies should be about: not mourning for what

never was,

> > but exploration of what is. We need you. We need your help and

your

> > understanding. Your world is not very open to us, and we won't

make it

> > without your strong support. Yes, there is tragedy that comes

with autism:

> > not because of what we are, but because of the things that happen

to us.

> > Be sad about that, if you want to be sad about something. Better

than

> > being sad about it, though, get mad about it--and then do

something about

> > it. The tragedy is not that we're here, but that your world has

no place

> > for us to be. How can it be otherwise, as long as our own parents

are

> > still grieving over having brought us into the world?

> >

> > Take a look at your autistic child sometime, and take a moment to

tell

> > yourself who that child is not. Think to yourself: " This is not

the child

> > that I expected and planned for. This is not the child I waited

for

> > through all those months of pregnancy and all those hours of

labor. This

> > is not the child I made all those plans to share all those

experiences

> > with. That child never came. This is not that child. " Then go do

whatever

> > grieving you have to do--away from the autistic child--and start

learning

> > to let go.

> >

> > After you've started that letting go, come back and look at your

autistic

> > child again, and say to yourself: " This is not the child that I

expected

> > and planned for. This is an alien child who landed in my life by

> > accident. I don't know who this child is or what it will become.

But I

> > know it's a child, stranded in an alien world, without parents of

its own

> > kind to care for it. It needs someone to care for it, to teach

it, to

> > interpret and to advocate for it. And because this alien child

happened to

> > drop into my life, that job is mine if I want it. "

> >

> > If that prospect excites you, then come join us, in strength and

> > determination, in hope and in joy. The adventure of a lifetime is

ahead of

> > you!

> >

> > Roxanne Przybysz

> > Founding Director

> > Autism Canada Foundation

> > http://www.autismcanada.org/home.htm

> > http://www.autismcanada.org/RansomVIDEOpsa.mov

> >

>

September 20, 2003

it's like comparing apples to oranges. perhaps it is a view that at some point

we may all need to consider BUT it is very untimely, since we just had Newsweek

tell the world that autism is just male geekiness and in some cases to be

treasured!

[ ] Don't Mourn For Us / By: Jim Sinclair

I was looking through some old files yesterday for an older man I email

with, who has Asperger Syndrome. He was telling me how misunderstood he has

felt his entire life. He hated that his parents were always trying to " fix

him " when he felt in his mind and heart he was never broken. I told him I

had a very old article saved, that was written by a fellow much like him who

put his thoughts to paper. When he got it he wrote me and said " Roxanne,

this is how I have ALWAYS felt. Thank you for giving me this. It proves to

me that I am not alone in my thinking and that I was not crazy all these

years. " Profound for me hearing this to tell you the truth, coming from a

grown man who lived his life in the shadows of his family because he was

different.

I felt for him, and I thought there were probably more out there like him.

Individuals looking for some sort of understanding or small place to call

their own in this world of OURS. I then forwarded it out. In hindsight,

maybe I should have added the caption that this did not necessarily portray

my views as a parent, as the sender, or the views of the foundation I am

apart of. I think it is implied though in all that I do, and all I have

sent in the past that I DO see things differently. But you know, in some

ways I can see his side so clearly also.

I try to understand my own daughter's quirkiness and odd-at-times behavior,

as being apart of who she is... her make up. I try to see that HER

perception is different than mine and many of her peers. I try to see

things from her viewpoint at times, despite how it pains me to do it. (As

this to me, feels like I am giving in to her Autism) When I get on her

playing field, I have noticed that her perspective isn't always so bad, and

in some ways it's kind of cool that she can see things that the rest of us

can't... while looking at the exact same picture.

I don't know why I sent it really. It could be the rain and wind of

Isabelle outside my window yesterday that got me thinking kind of

sentimental. Sorry if it offended any of you. It wasn't my intention.

However, given my stand on this very issue, I imagine I will get quite a few

more letters asking " what the heck was in my tea when I hit send " ???

Since the day my own daughter was diagnosed I have lived and

breathed...ridding Autism from my life and my world, and that of my families

and the lives of others. It has been a quest for me, a passion, a

compulsion of sorts and a driving force. It has served me well because I

see how far my child has progressed.

That article does go against much of what I believe and know as a parent of

an Autistic child. Parents who have a child who is sick from ANYTHING will

naturally and instinctively want to help them get better. Unfortunately,

some times in doing so, we can make our loved ones feel bad or inferior in

the process. This is a very fine line we need to examine and cross gently.

I think helping our kids get better from illnesses is a parents right and

duty if it is within their physical means. Not accepting the here and now of

Autism is another issue altogether. Acceptance on a variety of levels is

crucial. No matter how hard we work to rid them of the many things they are

plagued with...we still need to show them acceptance and love in the state

they are in front of us. I know I will never have the normal child I

thought I was having 7 years ago. But in changing my child now, I would be

essentially giving up the person I love for another person, a stranger of

sorts. This is not what I want. I just want my child to be happy, healthy,

loved, accepted and to have a good life. I am trying to do that with the

cards I have been dealt. This is the way it was supposed to be for me and

for her.

Jim Sinclair has some extremely valid points. And you know, to him, they

are ALL valid. This is okay, as he is allowed to have his own thoughts and

feelings. I really respect him for writing this piece. I don't believe his

words are wrong just because they are different than mine. They are just th

at...different.

I cannot deny that this article always strikes a chilling chord with me and

makes me re-evaluate my thoughts, words, actions and at times my inability

to act where my child is concerned. It has always been a " wake-me-up " kind

of article. But it doesn't make me stop fighting to help my daughter get

better.

It does however give me some insight into the thoughts and feelings of an

articulate, thought provoking, high functioning individual on the spectrum.

I don't think people should take offense and get upset by this article.

Sometimes seeing the other side of the coin can be a good thing.

Sincerely,

Roxanne Przybysz

Founding Director

Autism Canada Foundation

http://www.autismcanada.org/home.htm

http://www.autismcanada.org/RansomVIDEOpsa.mov

****************************************************************************

*

" Don't Mourn For Us "

By: Jim Sinclair

This article was published in " Our Voice " . The newsletter of Autism Network

International

Volume 1, Number 3, 1993.

Parents often report that learning their child is autistic was the most

traumatic thing that ever happened to them. Non-autistic people see autism

as a great tragedy, and parents experience continuing disappointment and

grief at all stages of the child's and family's life cycle. But this grief

does not stem from the child's autism in itself. It is

grief over the loss of the normal child the parents had hoped and expected

to have. Parents' attitudes and expectations, and the discrepancies between

what parents expect of children at a particular age and their own child's

actual development, cause more stress and anguish than the practical

complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event

and a relationship they've been looking forward to isn't going to

materialize. But this grief over a fantasized normal child needs to be

separated from the parents' perceptions of the child they do have: the

autistic child who needs the support of adult caretakers and who can form

very meaningful relationships with those caretakers if given the

opportunity. Continuing focus on the child's autism as a source of grief is

damaging for both the parents and the child, and precludes the development

of an accepting and authentic relationship between them. For their own sake

and for the sake of their children, I urge parents to make radical changes

in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our

perspective:

Autism is not an appendage. Autism isn't something a person has, or a

" shell " that a person is trapped inside. There's no normal child hidden

behind the autism. Autism is a way of being. It is pervasive; it colors

every experience, every sensation, perception, thought, emotion, and

encounter, every aspect of existence. It is not possible to separate the

autism from the person--and if it were possible, the person you'd have left

would not be the same person you started with.

This is important, so take a moment to consider it:

Autism is a way of being. It is not possible to separate the person from

the autism. Therefore, when parents say, " I wish my child did not have

autism, " what they're really saying is, " I wish the autistic child I have

did not exist, and I had a different (non-autistic) child instead. " Read

that again. This is what we hear when you mourn over our existence. This is

what we hear when you pray for a cure. This is what we know, when you tell

us of your fondest hopes and dreams for us: that your greatest wish is

that one day we will cease to be, and strangers you can love will move in

behind our faces. Autism is not an impenetrable wall.

You try to relate to your autistic child, and the child doesn't respond. He

doesn't see you; you can't reach her; there's no getting through. That's the

hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again:

You try to relate as parent to child, using your own understanding of normal

children, your own feelings about parenthood, your own experiences and

intuitions about relationships. And the child doesn't respond in any way you

can recognize as being part of that system. That does not mean the child is

incapable of relating at all. It only

means you're assuming a shared system, a shared understanding of signals and

meanings, that the child in fact does not share. It's as if you tried to

have an intimate conversation with someone who has no comprehension of your

language. Of course the person won't understand what you're talking about,

won't respond in the way you expect, and may well find the whole interaction

confusing and unpleasant. It takes more work to communicate with someone

whose native language isn't the same as yours.

And autism goes deeper than language and culture; autistic people are

" foreigners " in any society. You're going to have to give up your

assumptions about shared meanings. You're going to have to learn to back up

to levels more basic than you've probably thought about before, to

translate, and to check to make sure your translations are understood.

You're going to have to give up the certainty that comes of being on your

own familiar territory, of knowing you're in charge, and let your child

teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child

relationship. Your autistic child may learn to talk, may attend regular

classes in school, may go to college, drive a car, live independently, have

a career--but will never relate to you as other children relate to their

parents. Or your autistic child may never speak, may graduate from a

self-contained special education classroom to a sheltered activity program

or a residential facility, may need lifelong full-time care and

supervision--but is not completely beyond your reach. The ways we relate are

different.

Push for the things your expectations tell you are normal, and you'll find

frustration, disappointment, resentment, maybe even rage and hatred.

Approach respectfully without preconceptions, and with openness to learning

new things, and you'll find a world you could never have imagined. Yes,

that takes more work than relating to a non-autistic person. But it can be

done--unless non-autistic people are far more limited than we are in their

capacity to relate. We spend our entire lives doing it. Each of us who

does learn to talk to you, each of us who manages to function at all in your

society, each of us who manages to reach out and make a connection with you,

is operating in alien territory, making contact with alien beings. We spend

our entire lives doing this. And then you tell us that we can't relate.

Autism is not death. Granted, autism isn't what most parents expect or look

forward to when they anticipate the arrival of a child. What they expect is

a child who will be like them, who will share their world and relate to them

without requiring intensive on-the-job training in alien contact. Even if

their child has some disability other than autism, parents expect to be able

to relate to that child on the terms that seem normal to them; and in most

cases, even allowing for the limitations of various disabilities, it is

possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic.

Much of the grieving parents do is over the non-occurrence of the expected

relationship with an expected normal child. This grief is very real, and it

needs to be expected and worked through so people can get on with their

lives--but it has nothing to do with autism. What it comes down to is that

you expected something that was tremendously important to you, and you

looked forward to it with great joy and excitement, and maybe for a while

you thought you actually had it--and then, perhaps gradually, perhaps

abruptly, you had to recognize that the thing you looked forward to hasn't

happened. It isn't going to happen. No matter how many other, normal

children you have, nothing will change the fact that this time, the child

you waited and hoped and planned and dreamed for didn't arrive. This is the

same thing that parents experience when a child is stillborn, or when they

have their baby to hold for a short time, only to have it die in infancy. It

isn't about autism, it's about shattered expectations.

I suggest that the best place to address these issues is not in

organizations devoted to autism, but in parental bereavement counseling and

support groups. In those settings parents learn to come to terms with their

loss--not to forget about it, but to let it be in the past, where the grief

doesn't hit them in the face every waking moment of their lives. They learn

to accept that their child is gone, forever, and won't be coming back. Most

importantly, they learn not to take out their grief for the lost child on

their surviving children. This is of critical importance when one of those

surviving children arrived at the time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you

waited for never came into existence. That isn't the fault of the autistic

child who does exist, and it shouldn't be our burden. We need and deserve

families who can see us and value us for ourselves, not families whose

vision of us is obscured by the ghosts of children who never lived.

Grieve if you must, for your own lost dreams. But don't mourn for us. We are

alive. We are real. And we're here waiting for you. This is what I think

Autism Societies should be about: not mourning for what never was, but

exploration of what is. We need you. We need your help and your

understanding. Your world is not very open to us, and we won't make it

without your strong support. Yes, there is tragedy that comes with autism:

not because of what we are, but because of the things that happen to us. Be

sad about that, if you want to be sad about something. Better than being sad

about it, though, get mad about it--and then do something about it. The

tragedy is not that we're here, but that your world has no place for us to

be. How can it be otherwise, as long as our own parents are still grieving

over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell

yourself who that child is not. Think to yourself: " This is not the child

that I expected and planned for. This is not the child I waited for through

all those months of pregnancy and all those hours of labor. This is not the

child I made all those plans to share all those experiences with. That child

never came. This is not that child. " Then go do whatever grieving you have

to do--away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic

child again, and say to yourself: " This is not the child that I expected and

planned for. This is an alien child who landed in my life by accident. I

don't know who this child is or what it will become. But I know it's a

child, stranded in an alien world, without parents of its own kind to care

for it. It needs someone to care for it, to teach it, to interpret and to

advocate for it. And because this alien child happened to drop into my life,

that job is mine if I want it. "

If that prospect excites you, then come join us, in strength and

determination, in hope and in joy. The adventure of a lifetime is ahead of

you!

September 20, 2003

Roxanne; If I thought my kid was like Jim Sinclair, I'd appreciate

the article. As with most people here, I believe my son was born

normal and was poisoned into autism. Until I am proven wrong, I will

never accept it and I will fight with mt last breath to give my son a

chance to get back the normalcy that was taken from him. If it turns

out that he is autistic because of things that can not be cured, I

will do what I can to prevent him from being beaten to daeth in an

institution after I have croaked. I can't help but cherish the

infantile smiles I see on my 7 year old every day but, I am

infuriated that he is missing out on the opportunity to take money

from wealthy but poorly skilled golfers which is a skill I could have

taught him by now.

>

> I was looking through some old files yesterday for an older man I

email

> with, who has Asperger Syndrome. He was telling me how

misunderstood he has

> felt his entire life. He hated that his parents were always trying

to " fix

> him " when he felt in his mind and heart he was never broken. I

told him I

> had a very old article saved, that was written by a fellow much

like him who

> put his thoughts to paper. When he got it he wrote me and

said " Roxanne,

> this is how I have ALWAYS felt. Thank you for giving me this. It

proves to

> me that I am not alone in my thinking and that I was not crazy all

these

> years. " Profound for me hearing this to tell you the truth, coming

from a

> grown man who lived his life in the shadows of his family because

he was

> different.

>

> I felt for him, and I thought there were probably more out there

like him.

> Individuals looking for some sort of understanding or small place

to call

> their own in this world of OURS. I then forwarded it out. In

hindsight,

> maybe I should have added the caption that this did not necessarily

portray

> my views as a parent, as the sender, or the views of the foundation

I am

> apart of. I think it is implied though in all that I do, and all I

have

> sent in the past that I DO see things differently. But you know,

in some

> ways I can see his side so clearly also.

>

> I try to understand my own daughter's quirkiness and odd-at-times

behavior,

> as being apart of who she is... her make up. I try to see that HER

> perception is different than mine and many of her peers. I try to

see

> things from her viewpoint at times, despite how it pains me to do

it. (As

> this to me, feels like I am giving in to her Autism) When I get on

her

> playing field, I have noticed that her perspective isn't always so

bad, and

> in some ways it's kind of cool that she can see things that the

rest of us

> can't... while looking at the exact same picture.

>

> I don't know why I sent it really. It could be the rain and wind of

> Isabelle outside my window yesterday that got me thinking kind of

> sentimental. Sorry if it offended any of you. It wasn't my

intention.

> However, given my stand on this very issue, I imagine I will get

quite a few

> more letters asking " what the heck was in my tea when I hit send " ???

>

> Since the day my own daughter was diagnosed I have lived and

> breathed...ridding Autism from my life and my world, and that of my

families

> and the lives of others. It has been a quest for me, a passion, a

> compulsion of sorts and a driving force. It has served me well

because I

> see how far my child has progressed.

>

> That article does go against much of what I believe and know as a

parent of

> an Autistic child. Parents who have a child who is sick from

ANYTHING will

> naturally and instinctively want to help them get better.

Unfortunately,

> some times in doing so, we can make our loved ones feel bad or

inferior in

> the process. This is a very fine line we need to examine and cross

gently.

> I think helping our kids get better from illnesses is a parents

right and

> duty if it is within their physical means. Not accepting the here

and now of

> Autism is another issue altogether. Acceptance on a variety of

levels is

> crucial. No matter how hard we work to rid them of the many things

they are

> plagued with...we still need to show them acceptance and love in

the state

> they are in front of us. I know I will never have the normal child

I

> thought I was having 7 years ago. But in changing my child now, I

would be

> essentially giving up the person I love for another person, a

stranger of

> sorts. This is not what I want. I just want my child to be happy,

healthy,

> loved, accepted and to have a good life. I am trying to do that

with the

> cards I have been dealt. This is the way it was supposed to be for

me and

> for her.

>

> Jim Sinclair has some extremely valid points. And you know, to

him, they

> are ALL valid. This is okay, as he is allowed to have his own

thoughts and

> feelings. I really respect him for writing this piece. I don't

believe his

> words are wrong just because they are different than mine. They

are just th

> at...different.

>

> I cannot deny that this article always strikes a chilling chord

with me and

> makes me re-evaluate my thoughts, words, actions and at times my

inability

> to act where my child is concerned. It has always been a " wake-me-

up " kind

> of article. But it doesn't make me stop fighting to help my

daughter get

> better.

> It does however give me some insight into the thoughts and feelings

of an

> articulate, thought provoking, high functioning individual on the

spectrum.

>

> I don't think people should take offense and get upset by this

article.

> Sometimes seeing the other side of the coin can be a good thing.

>

> Sincerely,

>

> Roxanne Przybysz

> Founding Director

> Autism Canada Foundation

> http://www.autismcanada.org/home.htm

> http://www.autismcanada.org/RansomVIDEOpsa.mov

>

**********************************************************************

******

> *

>

> " Don't Mourn For Us "

>

> By: Jim Sinclair

>

> This article was published in " Our Voice " . The newsletter of Autism

Network

> International

>

> Volume 1, Number 3, 1993.

>

> Parents often report that learning their child is autistic was the

most

> traumatic thing that ever happened to them. Non-autistic people see

autism

> as a great tragedy, and parents experience continuing

disappointment and

> grief at all stages of the child's and family's life cycle. But

this grief

> does not stem from the child's autism in itself. It is

> grief over the loss of the normal child the parents had hoped and

expected

> to have. Parents' attitudes and expectations, and the

discrepancies between

> what parents expect of children at a particular age and their own

child's

> actual development, cause more stress and anguish than the practical

> complexities of life with an autistic person.

>

> Some amount of grief is natural as parents adjust to the fact that

an event

> and a relationship they've been looking forward to isn't going to

> materialize. But this grief over a fantasized normal child needs to

be

> separated from the parents' perceptions of the child they do have:

the

> autistic child who needs the support of adult caretakers and who

can form

> very meaningful relationships with those caretakers if given the

> opportunity. Continuing focus on the child's autism as a source of

grief is

> damaging for both the parents and the child, and precludes the

development

> of an accepting and authentic relationship between them. For their

own sake

> and for the sake of their children, I urge parents to make radical

changes

> in their perceptions of what autism means.

>

> I invite you to look at our autism, and look at your grief, from our

> perspective:

>

> Autism is not an appendage. Autism isn't something a person has,

or a

> " shell " that a person is trapped inside. There's no normal child

hidden

> behind the autism. Autism is a way of being. It is pervasive; it

colors

> every experience, every sensation, perception, thought, emotion, and

> encounter, every aspect of existence. It is not possible to

separate the

> autism from the person--and if it were possible, the person you'd

have left

> would not be the same person you started with.

>

> This is important, so take a moment to consider it:

>

> Autism is a way of being. It is not possible to separate the

person from

> the autism. Therefore, when parents say, " I wish my child did not

have

> autism, " what they're really saying is, " I wish the autistic child

I have

> did not exist, and I had a different (non-autistic) child

instead. " Read

> that again. This is what we hear when you mourn over our

existence. This is

> what we hear when you pray for a cure. This is what we know, when

you tell

> us of your fondest hopes and dreams for us: that your greatest wish

is

> that one day we will cease to be, and strangers you can love will

move in

> behind our faces. Autism is not an impenetrable wall.

>

> You try to relate to your autistic child, and the child doesn't

respond. He

> doesn't see you; you can't reach her; there's no getting through.

That's the

> hardest thing to deal with, isn't it? The only thing is, it isn't

true.

> Look at it again:

>

> You try to relate as parent to child, using your own understanding

of normal

> children, your own feelings about parenthood, your own experiences

and

> intuitions about relationships. And the child doesn't respond in

any way you

> can recognize as being part of that system. That does not mean the

child is

> incapable of relating at all. It only

> means you're assuming a shared system, a shared understanding of

signals and

> meanings, that the child in fact does not share. It's as if you

tried to

> have an intimate conversation with someone who has no comprehension

of your

> language. Of course the person won't understand what you're talking

about,

> won't respond in the way you expect, and may well find the whole

interaction

> confusing and unpleasant. It takes more work to communicate with

someone

> whose native language isn't the same as yours.

>

> And autism goes deeper than language and culture; autistic people

are

> " foreigners " in any society. You're going to have to give up your

> assumptions about shared meanings. You're going to have to learn to

back up

> to levels more basic than you've probably thought about before, to

> translate, and to check to make sure your translations are

understood.

> You're going to have to give up the certainty that comes of being

on your

> own familiar territory, of knowing you're in charge, and let your

child

> teach you a little of her language, guide you a little way into

his world.

> And the outcome, if you succeed, still will not be a normal parent-

child

> relationship. Your autistic child may learn to talk, may attend

regular

> classes in school, may go to college, drive a car, live

independently, have

> a career--but will never relate to you as other children relate to

their

> parents. Or your autistic child may never speak, may graduate from a

> self-contained special education classroom to a sheltered activity

program

> or a residential facility, may need lifelong full-time care and

> supervision--but is not completely beyond your reach. The ways we

relate are

> different.

>

> Push for the things your expectations tell you are normal, and

you'll find

> frustration, disappointment, resentment, maybe even rage and hatred.

> Approach respectfully without preconceptions, and with openness to

learning

> new things, and you'll find a world you could never have imagined.

Yes,

> that takes more work than relating to a non-autistic person. But it

can be

> done--unless non-autistic people are far more limited than we are

in their

> capacity to relate. We spend our entire lives doing it. Each of us

who

> does learn to talk to you, each of us who manages to function at

all in your

> society, each of us who manages to reach out and make a connection

with you,

> is operating in alien territory, making contact with alien beings.

We spend

> our entire lives doing this. And then you tell us that we can't

relate.

>

> Autism is not death. Granted, autism isn't what most parents

expect or look

> forward to when they anticipate the arrival of a child. What they

expect is

> a child who will be like them, who will share their world and

relate to them

> without requiring intensive on-the-job training in alien contact.

Even if

> their child has some disability other than autism, parents expect

to be able

> to relate to that child on the terms that seem normal to them; and

in most

> cases, even allowing for the limitations of various disabilities,

it is

> possible to form the kind of bond the parents had been looking

forward to.

> But not when the child is autistic.

>

> Much of the grieving parents do is over the non-occurrence of the

expected

> relationship with an expected normal child. This grief is very

real, and it

> needs to be expected and worked through so people can get on with

their

> lives--but it has nothing to do with autism. What it comes down to

is that

> you expected something that was tremendously important to you, and

you

> looked forward to it with great joy and excitement, and maybe for a

while

> you thought you actually had it--and then, perhaps gradually,

perhaps

> abruptly, you had to recognize that the thing you looked forward to

hasn't

> happened. It isn't going to happen. No matter how many other, normal

> children you have, nothing will change the fact that this time, the

child

> you waited and hoped and planned and dreamed for didn't arrive.

This is the

> same thing that parents experience when a child is stillborn, or

when they

> have their baby to hold for a short time, only to have it die in

infancy. It

> isn't about autism, it's about shattered expectations.

>

> I suggest that the best place to address these issues is not in

> organizations devoted to autism, but in parental bereavement

counseling and

> support groups. In those settings parents learn to come to terms

with their

> loss--not to forget about it, but to let it be in the past, where

the grief

> doesn't hit them in the face every waking moment of their lives.

They learn

> to accept that their child is gone, forever, and won't be coming

back. Most

> importantly, they learn not to take out their grief for the lost

child on

> their surviving children. This is of critical importance when one

of those

> surviving children arrived at the time the child being mourned for

died.

>

> You didn't lose a child to autism. You lost a child because the

child you

> waited for never came into existence. That isn't the fault of the

autistic

> child who does exist, and it shouldn't be our burden. We need and

deserve

> families who can see us and value us for ourselves, not families

whose

> vision of us is obscured by the ghosts of children who never lived.

>

> Grieve if you must, for your own lost dreams. But don't mourn for

us. We are

> alive. We are real. And we're here waiting for you. This is what I

think

> Autism Societies should be about: not mourning for what never was,

but

> exploration of what is. We need you. We need your help and your

> understanding. Your world is not very open to us, and we won't make

it

> without your strong support. Yes, there is tragedy that comes with

autism:

> not because of what we are, but because of the things that happen

to us. Be

> sad about that, if you want to be sad about something. Better than

being sad

> about it, though, get mad about it--and then do something about it.

The

> tragedy is not that we're here, but that your world has no place

for us to

> be. How can it be otherwise, as long as our own parents are still

grieving

> over having brought us into the world?

>

> Take a look at your autistic child sometime, and take a moment to

tell

> yourself who that child is not. Think to yourself: " This is not the

child

> that I expected and planned for. This is not the child I waited for

through

> all those months of pregnancy and all those hours of labor. This is

not the

> child I made all those plans to share all those experiences with.

That child

> never came. This is not that child. " Then go do whatever grieving

you have

> to do--away from the autistic child--and start learning to let go.

>

> After you've started that letting go, come back and look at your

autistic

> child again, and say to yourself: " This is not the child that I

expected and

> planned for. This is an alien child who landed in my life by

accident. I

> don't know who this child is or what it will become. But I know

it's a

> child, stranded in an alien world, without parents of its own kind

to care

> for it. It needs someone to care for it, to teach it, to interpret

and to

> advocate for it. And because this alien child happened to drop into

my life,

> that job is mine if I want it. "

>

> If that prospect excites you, then come join us, in strength and

> determination, in hope and in joy. The adventure of a lifetime is

ahead of

> you!

September 21, 2003

>>On the other hand, I

> feel really hurt when people told me that I

> should just accept my son, when they themselves

> raced to the doctors with every little health

> problem that their own children have. Why

> should my son's health matter less just because

> he has the diagnosis of autism? Is that a

> diagnosis of hopelessness for them?

Most people still believe autism is genetic, so they believe parents

who are " trying to cure it " are just chasing dreams and should realize

that and accept the child.

I have no problem with parents trying to help their children with

biomedical or education needs, but not at the expense of the child

believing he is defective or not worthy. On other message boards or

by private email, sometimes parents write that their child has been

saying " I don't want to go to [therapist, doctor, etc], don't you love

me just like I am? " Those children seem to be sensing that their

parents don't love them and are trying to " fix them " to make them

acceptable, rather than trying to help them.

It is a fine line sometimes.

Dana

September 22, 2003

This article turned my stomach until I got to this telling sentence:

" How can it be otherwise, as long as our own parents are still

grieving over having brought us into the world? "

This is one poor man's insecurity and feelings of being unloved.

Something I have no business addressing.

But for those just starting interventions -- Absolutely there is

a " different " child trapped in there. Never give up that hope. My

son is 180 degrees a different child than he was one year ago before

treatments. Today he is a very happy, loving toddler. He still has

bad moments and issues and regressions with food exposures but he is

getting better.

He has recently learned to sign (literally in a matter of days) and

he can communicate with us very well. He's made it very clear he has

understood everything along the way. His developmental therapist

says he is at least a year ahead in receptive language, if not two,

and about a year behind in expressive (he's almost 27 months).

That's HUGE considering he was nonverbal just a few months ago.

I will never, ever give up that hope of bringing back the beautiful,

wonderful child God gave me and we, as humans, inadvertently f-ed

up. And I feel no guilt in that. It's what keeps me going.

Truly,

a

September 22, 2003

Again, I say that I may not have anything exactly in common with anyone's child,

but I always, always could hear and understand everything other's said when

I was not able to talk. I was great for me to read that you know that your

young child could always understand everything along the way.

I was unsure if my ability to hear might not be the same for a child who

had problems being verbal at a very young age.

The only hearing problems I had was if the person was beside me talking

instead of in front of me, looking at me, talking. (or the radio)

[ ] Re: Don't Mourn For Us / By: Jim Sinclair