in reply to Autistics Need Acceptance, Not Cure

[Guest guest]

Just FYI.....

from another list.....

-jypsy

I wrote the following letter to the Schafer Autism

Report, but it was not selected for publication (Lenny--That's not a

complaint; I know you get hundreds of these.) and I want to share it with

all of you because I am VERY concerned about this new direction in the

autism debates.

My best to all of you,

Liz

To the editor of the Schafer Autism Report:

I read with grave concern the letter from the mother who called for an end

to the efforts of parents and medical professionals to " cure " autism. (See

" Autistics Need Acceptance, Not Cure " in SAR April 28, 2004.) She likened

the arguments of parents like me to the sentiments of people who are

anti-gay and described us as hateful individuals who show no compassion for

the personality of autism. Her analogy is completely off and, therefore,

her argument is fundamentally flawed.

Autism is no more a personality than is Fetal Alcohol Syndrome. Autism

results from brain damage. We know that, in addition to genetic causes

(such as Fragile X), autism can be caused by environmental insults inflicted

on a developing baby in the womb, just as Fetal Alcohol Syndrome can be

caused by such insults. In her article describing the results of her

research into the genetic causes of autism, Dr. Rodier of the

University of Rochester outlined the historically documented effects of

Thalidomide on developing babies-including the development of autism if the

mother took Thalidomide during the first 24 days following conception (The

Early Origins of Autism, Scientific American, February 2000, p. 56-63). We

also know that children with lead poisoning and those with PKU can develop

autism if their conditions are not detected quickly and treated

appropriately. To my knowledge, no research exists to establish that sexual

preference can be caused by environmental insults either during gestation or

after birth. Therefore, the analogy to homosexuality is patently

ridiculous. No reasonable person would argue that children suffering from

Fetal Alcohol Syndrome, lead or mercury poisoning, or PKU are members of a

personality sub-group and must be " accepted " rather than treated.

Our children can overcome the effects of their brain injuries if proven

effective treatment is initiated early and administered intensively.

Long-standing research shows us that Applied Behavior Analysis therapy works

to either eradicate or significantly ameliorate the effects of autism. If

so, why must parents fight to obtain funding for a proven effective

intervention? In addition, a growing body of research indicates that

certain biomedical treatments are highly effective in the treatment of

underlying medical conditions associated with autism. If so, why must

parents and doctors fight to obtain funding for lab tests and treatment for

children with autism?

Sadly, the answer may stem from the fact that there are so many camps in the

autism wars that we cannot seem to organize a united body with a united

message. As long as there are some fringe groups who will argue that autism

is a " personality " rather than a disability, government officials and health

insurance administrators will latch on to such arguments as proof that

nothing should be done to help our children. We must send a much louder

message that says in plain words: Autism is a disability and it can be

treated.

My heart goes out to that mother in Madison who may be reacting to the

dramatic gains other children have made with therapy. It is sometimes hard

to live here in Wisconsin, where the autism community includes so many

recovered children. I find it hard not to let envy overcome me when I

socialize with friends with recovered children because it seems so unfair

that they have " graduated " from their ABA programs and I must still live

every minute of every day reading research, going to workshops, supervising

therapists, studying data, making

gluten-and-casein-and-soy-and-everything-free foods, etc. I sometimes find

myself looking for a way out of this marathon assault on autism and

arguments like those in her letter tempt me to give up and simply " accept "

my son as he is. Then, I remind myself that he is the charming, verbal,

obviously intelligent child in a typical 2nd grade classroom because of ABA,

not in spite of it. He was severely autistic and obviously miserable five

years ago. Today, he is happy and well on the road to an independent life.

According to the mother who wrote the editorial, those of us who advocate

for funding for necessary medical treatment for our children are selfish

people who cannot see the hidden glory of our children's personalities. She

is wrong. It is precisely because we can see the hidden potential of our

children that we refuse to let them be locked away forever, forgotten by a

society that seems afraid to recognize that there are treatments that can

either completely erase the devastating effects of the brain damage or

significantly ameliorate the most disabling symptoms. The fact that we can

visualize the tremendous lives our children could have if they did not have

to fight so hard to be understood and to understand is what keeps us pushing

and what keeps us from passively accepting the arguments of those who try to

tell us that effective treatments cost too much. Those arguments may fly in

some other society, but I refuse to believe that Americans and Canadians

will accept the widespread discrimination against disabled children that is

the current state of affairs in our countries. Once members of the general

public learn of our children's plights (and it is our responsibility to

inform them-over and over, if necessary), they will stand up and say

" enough. " Until then, we must continue to fight both the effects of autism

in our own homes and the ignorance about it in the homes of others-not just

during " Autism Awareness Month, " but always.

, J.D.

Neenah, Wisconsin

________________________________

Ooops....Wrong Planet! Syndrome

Autism Spectrum Resources

www.PlanetAutism.com

jypsy@...

[Guest guest]

(as posted by jypsy) wrote:

>Sadly, the answer may stem from the fact that there are so many camps in the

>autism wars that we cannot seem to organize a united body with a united

>message. As long as there are some fringe groups who will argue that autism

>is a " personality " rather than a disability, government officials and health

>insurance administrators will latch on to such arguments as proof that

>nothing should be done to help our children. We must send a much louder

>message that says in plain words: Autism is a disability and it can be

>treated.

How does it feel to be a " camp, " friends? At least this letter

seesm to indicate that we may be beginning to be an influential

" camp. " The next step is to " shout " loudly and clearly enough

that our " camp " is heard to say not " no treatment for autism, "

but " appropriate (inidividual) treatment for (individual)

problems " (as determined by " from the inside " thinking.

>My heart goes out to that mother in Madison who may be reacting to the

>dramatic gains other children have made with therapy. It is sometimes hard

>to live here in Wisconsin, where the autism community includes so many

>recovered children.

" recovered children " Ugh. I'm afraid that means as much

" recovered from the monster Autism that stole the child in

the first place " as it means " a child who has recovered

from an illness. " Although both senses of the phrase are

wrong and dangerous, the two meanings together seem to

produce a wrong that is greater than the sum of the parts. :-(

Reminds me (moving to a totally different subject): I just

finished listening to Patchett's " Hogfather. " When one evil

character says he " never lost touch with his inner child, "

responds by describing herself as " the inner

babysitter. " :-)

Jane

[Guest guest]

> How does it feel to be a " camp, " friends? At least this letter

> seesm to indicate that we may be beginning to be an influential

> " camp. " The next step is to " shout " loudly and clearly enough

> that our " camp " is heard to say not " no treatment for autism, "

> but " appropriate (inidividual) treatment for (individual)

> problems " (as determined by " from the inside " thinking.

Cool, when I was a kid I always wanted to go to camp... (I got to go to

" behavior camp " instead, which isn't a very fun camp for an autistic

person; I will always remember being beaten with fairly painful objects as

a *REWARD* for my good behavior, but that is a gripe for another time...)

--

[Guest guest]

gack

I like 's expression. Free range autistics. she used the

example of the little boy in " not even wrong " as a free range autistic

whose parents let him cue them on what he wanted to learn.

there must be voodoo dolls out there with our names on them.

Camille

> Just FYI.....

> from another list.....

> -jypsy

>

> I wrote the following letter to the Schafer Autism

> Report, but it was not selected for publication (Lenny--That's not a

> complaint; I know you get hundreds of these.) and I want to share it

with

> all of you because I am VERY concerned about this new direction in the

> autism debates.

>

> My best to all of you,

> Liz

>

> To the editor of the Schafer Autism Report:

>

>

>

> I read with grave concern the letter from the mother who called for

an end

> to the efforts of parents and medical professionals to " cure "

autism. (See

> " Autistics Need Acceptance, Not Cure " in SAR April 28, 2004.) She

likened

> the arguments of parents like me to the sentiments of people who are

> anti-gay and described us as hateful individuals who show no

compassion for

> the personality of autism. Her analogy is completely off and, therefore,

> her argument is fundamentally flawed.

>

>

>

> Autism is no more a personality than is Fetal Alcohol Syndrome. Autism

> results from brain damage. We know that, in addition to genetic causes

> (such as Fragile X), autism can be caused by environmental insults

inflicted

> on a developing baby in the womb, just as Fetal Alcohol Syndrome can be

> caused by such insults. In her article describing the results of her

> research into the genetic causes of autism, Dr. Rodier of the

> University of Rochester outlined the historically documented effects of

> Thalidomide on developing babies-including the development of autism

if the

> mother took Thalidomide during the first 24 days following

conception (The

> Early Origins of Autism, Scientific American, February 2000, p.

56-63). We

> also know that children with lead poisoning and those with PKU can

develop

> autism if their conditions are not detected quickly and treated

> appropriately. To my knowledge, no research exists to establish that

sexual

> preference can be caused by environmental insults either during

gestation or

> after birth. Therefore, the analogy to homosexuality is patently

> ridiculous. No reasonable person would argue that children suffering

from

> Fetal Alcohol Syndrome, lead or mercury poisoning, or PKU are

members of a

> personality sub-group and must be " accepted " rather than treated.

>

>

>

> Our children can overcome the effects of their brain injuries if proven

> effective treatment is initiated early and administered intensively.

> Long-standing research shows us that Applied Behavior Analysis

therapy works

> to either eradicate or significantly ameliorate the effects of

autism. If

> so, why must parents fight to obtain funding for a proven effective

> intervention? In addition, a growing body of research indicates that

> certain biomedical treatments are highly effective in the treatment of

> underlying medical conditions associated with autism. If so, why must

> parents and doctors fight to obtain funding for lab tests and

treatment for

> children with autism?

>

>

>

> Sadly, the answer may stem from the fact that there are so many

camps in the

> autism wars that we cannot seem to organize a united body with a united

> message. As long as there are some fringe groups who will argue that

autism

> is a " personality " rather than a disability, government officials

and health

> insurance administrators will latch on to such arguments as proof that

> nothing should be done to help our children. We must send a much louder

> message that says in plain words: Autism is a disability and it can be

> treated.

>

>

>

> My heart goes out to that mother in Madison who may be reacting to the

> dramatic gains other children have made with therapy. It is

sometimes hard

> to live here in Wisconsin, where the autism community includes so many

> recovered children. I find it hard not to let envy overcome me when I

> socialize with friends with recovered children because it seems so

unfair

> that they have " graduated " from their ABA programs and I must still live

> every minute of every day reading research, going to workshops,

supervising

> therapists, studying data, making

> gluten-and-casein-and-soy-and-everything-free foods, etc. I

sometimes find

> myself looking for a way out of this marathon assault on autism and

> arguments like those in her letter tempt me to give up and simply

" accept "

> my son as he is. Then, I remind myself that he is the charming, verbal,

> obviously intelligent child in a typical 2nd grade classroom because

of ABA,

> not in spite of it. He was severely autistic and obviously miserable

five

> years ago. Today, he is happy and well on the road to an independent

life.

>

>

>

> According to the mother who wrote the editorial, those of us who

advocate

> for funding for necessary medical treatment for our children are selfish

> people who cannot see the hidden glory of our children's

personalities. She

> is wrong. It is precisely because we can see the hidden potential of our

> children that we refuse to let them be locked away forever,

forgotten by a

> society that seems afraid to recognize that there are treatments

that can

> either completely erase the devastating effects of the brain damage or

> significantly ameliorate the most disabling symptoms. The fact that

we can

> visualize the tremendous lives our children could have if they did

not have

> to fight so hard to be understood and to understand is what keeps us

pushing

> and what keeps us from passively accepting the arguments of those

who try to

> tell us that effective treatments cost too much. Those arguments may

fly in

> some other society, but I refuse to believe that Americans and Canadians

> will accept the widespread discrimination against disabled children

that is

> the current state of affairs in our countries. Once members of the

general

> public learn of our children's plights (and it is our responsibility to

> inform them-over and over, if necessary), they will stand up and say

> " enough. " Until then, we must continue to fight both the effects of

autism

> in our own homes and the ignorance about it in the homes of

others-not just

> during " Autism Awareness Month, " but always.

>

>

>

> , J.D.

>

> Neenah, Wisconsin

>

>

> ________________________________

> Ooops....Wrong Planet! Syndrome

> Autism Spectrum Resources

> www.PlanetAutism.com

> jypsy@i...