How About Not 'Curing' Us, Some Autistics Are Pleading

[Guest guest]

From Bowen

Source is listed

Long article- sorry I didn't have the link to forward

How About Not 'Curing' Us, Some Autistics Are Pleading

New York Times

BOICEVILLE, N.Y. - Jack , a 10th grader at a school for autistic

teenagers and an expert on the nation's roadways, tore himself away from

his satellite map one recent recess period to critique a television program

about the search for a cure for autism.

" We don't have a disease, " said Jack, echoing the opinion of the other 15

boys at the experimental Aspie school here in the Catskills. " So we can't

be 'cured.' This is just the way we are. "

From behind his GameBoy, Mulvaney, another 10th grader, objected to

the program's description of people " suffering " from Asperger's syndrome,

the form of autism he has.

" People don't suffer from Asperger's, " said. " They suffer because

they're depressed from being left out and beat up all the time. "

That, at least, was what happened to these students at mainstream schools

before they found refuge here.

But unlike many programs for autistics, this school's program does not try

to expunge the odd social behaviors that often make life so difficult for

them. Its unconventional aim is to teach students that it is O.K. to " act

autistic " and also how to get by in a world where it is not.

Trained in self-advocacy, students proudly recite the positive traits

autism can confer, like the ability to develop uncanny expertise in an area

of interest. This year's class includes specialists on supervolcanoes and

medieval weaponry.

" Look at Jack, " pointed out. " He doesn't even need a map. He's like

a living map. "

The new program, whose name stands for Autistic Strength, Purpose and

Independence in Education - and whose acronym is a short form of Asperger's

- is rooted in a view of autism as an alternative form of brain wiring,

with its own benefits and drawbacks, rather than a devastating disorder in

need of curing.

It is a view supported by an increasingly vocal group of adult autistics,

including some who cannot use speech to communicate and have been

institutionalized because of their condition. But it is causing

consternation among many parents whose greatest hope is to avoid that very

future for their children. Many believe that intensive behavioral therapy

offers the only rescue from the task of caring for unpredictable, sometimes

aggressive children, whose condition can take a toll on the entire family.

The autistic activists say they want help, too, but would be far better off

learning to use their autistic strengths to cope with their autistic

impairments rather than pretending that either can be removed. Some

autistic tics, like repetitive rocking and violent outbursts, they say,

could be modulated more easily if an effort were made to understand their

underlying message, rather than trying to train them away. Other traits,

like difficulty with eye contact, with grasping humor or with breaking from

routines, might not require such huge corrective efforts on their part if

people were simply more tolerant.

Spurred by an elevated national focus on finding a cure for autism at a

time when more Americans are receiving autism diagnoses than ever before -

about one in 200 - a growing number of autistics are staging what they say

amounts to an ad hoc human rights movement. They sell Autistic Liberation

Front buttons and circulate petitions on Web sites like neurodiversity.com

to " defend the dignity of autistic citizens. " The Autistic Advocacy e-mail

list, one of dozens that connect like-minded autistics, has attracted

nearly 400 members since it started last year.

" We need acceptance about who we are and the way we are, " said Joe Mele,

36, who staged a protest at Beach, on Long Island, while 10,000

people marched to raise money for autism research recently. " That means you

have to get out of the cure mind-set. "

A neurological condition that can render standard forms of communication

like tone of voice, facial expression and even spoken language unnatural

and difficult to master, autism has traditionally been seen as a shell from

which a normal child might one day emerge. But some advocates contend that

autism is an integral part of their identities, much more like a skin than

a shell, and not one they care to shed.

The effort to cure autism, they say, is not like curing cancer, but like

the efforts of a previous age to cure left-handedness. Some worry that in

addition to troublesome interventions, the ultimate cure will be a genetic

test to prevent autistic children from being born.

That would be a loss, they say, not just for social tolerance but because

autistics, with their obsessive attention to detail and eccentric

perspective, can provide valuable insight and innovation. The neurologist

Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century

chemist who discovered hydrogen, was most likely autistic.

" What they're saying is their goal is to create a world that has no people

like us in it, " said Jim Sinclair, who did not speak until he was 12 and

whose 1993 essay " Don't Mourn for Us " serves as a touchstone for a

fledgling movement.

At this year's " Autreat, " an annual spring gathering of autistics,

attendees compared themselves to gay rights activists, or the deaf who

prefer sign language over surgery that might allow them to hear. Some

discussed plans to be more openly autistic in public, rather than take the

usual elaborate measures to fit in. Others vowed to create more

autistic-friendly events and spaces.

Autreat participants, for instance, can wear color-coded badges that

indicate whether they are willing to be approached for conversation. Common

autistic mannerisms, like exceedingly literal conversation and

hand-flapping, are to be expected. Common sources of autistic irritation,

like casual hugs and fluorescent lighting, are not.

For many parents, however, the autistic self-advocacy movement often sounds

like a threat to the brighter future they envision for their children. In

recent months, the long-simmering argument has erupted into an online brawl

over the most humane way to handle an often crippling condition.

On e-mail lists frequented by autistics, some parents are derided as

" curebies " and portrayed as slaves to conformity, so anxious for their

children to appear normal that they cannot respect their way of

communicating. Parents argue that their antagonists are showing a typical

autistic lack of empathy by suggesting that they should not try to help

their children. It is only those whose diagnosis describes them as " high

functioning " or having Asperger's syndrome, they say, who are opposed to a

cure.

" If those who raise their opposition to the so-called oppression of the

autistic would simply substitute their usage of 'autism or autistic' with

'Asperger's,' their arguments might make some sense, " Lenny Schafer,

publisher of the widely circulated Schafer Autism Report, wrote in a recent

e-mail message. " But I intend to cure, fix, repair, change over etc. my son

and others like him of his profound and typical disabling autism into

something better. Let us regain our common sense. "

But the autistic activists say it is not so easy to distinguish between

high and low functioning, and their ranks include both.

In an effort to refute parental skeptics, the three owners of

autistics.org, a major Web hub of autistic advocacy, issued a statement

listing their various impairments. None of them are fully toilet-trained,

one of them cannot speak, and they have all injured themselves on multiple

occasions, they wrote: " We flap, finger-flick, rock, twist, rub, clap,

bounce, squeal, hum, scream, hiss and tic. "

The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A.,

the therapy that many parents say is the only way their children were able

to learn to make eye contact, talk and get through the day without throwing

tantrums. Some autistic adults, including some who have had the therapy,

say that at its best it trains children to repress their natural form of

expression and at its worst borders on being abusive. If an autistic child

who screams every time he is taken to the supermarket is trained not to,

for example, he may still be experiencing pain from the fluorescent lights

and crush of strangers.

" Behaviors are so often attempts to communicate, " said Jane Meyerding, an

autistic woman who has a clerical job at the University of Washington and

is a frequent contributor to the Autistic Advocacy e-mail discussion list.

" When you snuff out the behaviors you snuff out the attempts to

communicate. "

Perhaps the most public conflict between parents and adult autistics came

in a lawsuit brought by several Canadian families who argued that the

government should pay for their children's A.B.A. therapy because it is

medically necessary. Dawson, an autistic woman in Montreal,

submitted testimony questioning the ethics of the therapy, which the

Canadian Supreme Court cited in its ruling against the families in November.

Ms. Dawson's position infuriates many parents who are fighting their own

battles to get governments and insurance companies to pay for the expensive

therapy.

" I'm afraid of this movement, " said Kit Weintraub, the mother of two

autistic children in Madison, Wis.

Ms. Weintraub's son, , has benefited greatly from A.B.A., she said,

and she is unapologetic about wanting to remove his remaining quirks, like

his stilted manner of speaking and his wanting to be Mickey Mouse for

Halloween when other 8-year-olds want to be Frodo from " The Lord of the

Rings. "

" I worry about when he gets into high school, somebody doesn't want to date

him or be his friend, " she said. " It's no fun being different. "

The dispute extends even to the basic terminology of autism.

" I would appreciate it, if I end up in your article, if you describe me as

'an autistic' or 'an autistic person,' versus the 'person with...,' " Ms.

Dawson wrote in an e-mail message. " Just like you would feel odd if people

said you were a 'person with femaleness.' "

Ms. Weintraub insists on the opposite. " My children have autism, they are

not 'autistics,' " she wrote in her own widely circulated essay, " A

Mother's Perspective. " " It is no more normal to be autistic than it is to

have spina bifida. "

Terry , 37, who has Asperger's syndrome, said he was not opposed to

the concept of a cure for autism but he suggested that there was a

pragmatic reason to look for other options.

" I don't think it's going to be easy to find, " Mr. said. " That's why

I opt for changing the world around me; I think that does more long-term

good. "

[Guest guest]

This is horrifying to me that 3 grown men choose not to be fully toilet trained and to self injure.

They are obviously intelligent individuals- so it must be choice or defiance or ???

This makes all people with ASD's look bad IMHO.

-S GA

In an effort to refute parental skeptics, the three owners ofautistics.org, a major Web hub of autistic advocacy, issued a statementlisting their various impairments. None of them are fully toilet-trained,one of them cannot speak, and they have all injured themselves on multipleoccasions, they wrote: "We flap, finger-flick, rock, twist, rub, clap,bounce, squeal, hum, scream, hiss and tic."

[Guest guest]

They didn't " choose " to not be toilet-trained. They haven't the ability

(awareness, muscle control, ability to divert attention, etc.) that they

would need to be " toilet-trained. " Also, at least two of the owners are

women. They also have such poor muscle control/ability to deal with the

overload involved in daily life in their homes that they are partially

confined to wheelchairs. They don't have 24-hour care, as most people

in wheelchairs with " real issues " would have if consigned to a state

institution, so they are on their own when it comes to toileting issues.

The entire point is that these people ARE intelligent and thoughtful,

and are able to express themselves in writing and to socialize on the

internet. The point is NOT that they are totally disabled from your

point of view and therefore shameful.

If the money raised for " cure " of a permanent brain structural

difference were used to help maintain people like this in adulthood, ALL

our lives would be much better. The lives of your children as adults

would be better if they get whatever help they need at their particular

and spotty " level " of ability.

Patty

http://www.autistics.cc (not autistics.org)

Cj wrote:

> This is horrifying to me that 3 grown men choose not to be fully toilet

> trained and to self injure.

> They are obviously intelligent individuals- so it must be choice or

> defiance or ???

> This makes all people with ASD's look bad IMHO.

> -S GA

>

>

> In an effort to refute parental skeptics, the three owners of

> autistics.org, a major Web hub of autistic advocacy, issued a statement

> listing their various impairments. None of them are fully

> toilet-trained,

> one of them cannot speak, and they have all injured themselves on

> multiple

> occasions, they wrote: " We flap, finger-flick, rock, twist, rub, clap,

> bounce, squeal, hum, scream, hiss and tic. "

>

[Guest guest]

It is an interesting problem, isn't

it? To decide how to spend money raised: for " curing "

autism or for maintaining those with it who have not been " cured " .

I suppose it all comes from your perspective. Right now, while

my child is young, I am all for every dollar being spent on investigating

a " cure " . I'm sure, though, that when he is older, and

if he is not " cured " , I will wish for funds to help maintain

his life in a manner that is a good as it gets. Surely, this is a

typical delimma for all special needs people and their parents. I

would say that raising money to help figure out the cause is good, no matter

what, because the numer of autistics has increased so dramatically. No

one wishes that this problem continue to increase.

Thank you, Patty, for pointing out that

autistics don't " choose " not to be potty trained. I'm surprised

that someone on this list doesn't have an understanding of that. My

son, who is almost 7, isn't potty trained either, and I am sure it isn't

because he loves wearing a diaper and sitting in poop from time to time

before I realize he needs to be changed, but is rather because he doesn't

have sensations to warn him that he has to go to the bathroom. I

have seen him naked, with pee coming out of his body, with a look of total

surprise. To those who have had success with potty training, good

for you. It is really frustrating to those of us who have not had

success in that arena for judgments to be made that this is somehow intentional

on the part of our child.

" E. "

<patriciaeclark@...>

12/21/2004 11:28 AM

Please respond to

autism

To

autism

cc

Subject

Re: How

About Not 'Curing' Us, Some Autistics Are Pleading

They didn't " choose " to not be toilet-trained. They haven't

the ability

(awareness, muscle control, ability to divert attention, etc.) that they

would need to be " toilet-trained. " Also, at least two of

the owners are

women. They also have such poor muscle control/ability to deal with

the

overload involved in daily life in their homes that they are partially

confined to wheelchairs. They don't have 24-hour care, as most people

in wheelchairs with " real issues " would have if consigned to

a state

institution, so they are on their own when it comes to toileting issues.

The entire point is that these people ARE intelligent and thoughtful,

and are able to express themselves in writing and to socialize on the

internet. The point is NOT that they are totally disabled from your

point of view and therefore shameful.

If the money raised for " cure " of a permanent brain structural

difference were used to help maintain people like this in adulthood, ALL

our lives would be much better. The lives of your children as adults

would be better if they get whatever help they need at their particular

and spotty " level " of ability.

Patty

http://www.autistics.cc (not autistics.org)

Cj wrote:

> This is horrifying to me that 3 grown men choose not to be fully toilet

> trained and to self injure.

> They are obviously intelligent individuals- so it must be choice or

> defiance or ???

> This makes all people with ASD's look bad IMHO.

> -S GA

>

>

> In an effort to refute parental skeptics, the three

owners of

> autistics.org, a major Web hub of autistic advocacy,

issued a statement

> listing their various impairments. None of them are

fully

> toilet-trained,

> one of them cannot speak, and they have all injured

themselves on

> multiple

> occasions, they wrote: " We flap, finger-flick,

rock, twist, rub, clap,

> bounce, squeal, hum, scream, hiss and tic. "

>

[Guest guest]

Thanks. I would like to point out also that abilities can be very

scattered or " spotty. " My son wasn't dry at night until he was 18, BUT

he found his own job, has been employed at the same place for four

years, and owns his own home, that HE arranged all the financing for.

In many cases it seems easier to exercise the mind than the body when a

person has autism.

Patty

Cowen wrote:

>

> It is an interesting problem, isn't it? To decide how to spend money

> raised: for " curing " autism or for maintaining those with it who have

> not been " cured " . I suppose it all comes from your perspective. Right

> now, while my child is young, I am all for every dollar being spent on

> investigating a " cure " . I'm sure, though, that when he is older, and if

> he is not " cured " , I will wish for funds to help maintain his life in a

> manner that is a good as it gets. Surely, this is a typical delimma for

> all special needs people and their parents. I would say that raising

> money to help figure out the cause is good, no matter what, because the

> numer of autistics has increased so dramatically. No one wishes that

> this problem continue to increase.

>

> Thank you, Patty, for pointing out that autistics don't " choose " not to

> be potty trained. I'm surprised that someone on this list doesn't have

> an understanding of that. My son, who is almost 7, isn't potty trained

> either, and I am sure it isn't because he loves wearing a diaper and

> sitting in poop from time to time before I realize he needs to be

> changed, but is rather because he doesn't have sensations to warn him

> that he has to go to the bathroom. I have seen him naked, with pee

> coming out of his body, with a look of total surprise. To those who

> have had success with potty training, good for you. It is really

> frustrating to those of us who have not had success in that arena for

> judgments to be made that this is somehow intentional on the part of our

> child.

>

>

[Guest guest]

My son, , is just 4 and potty training has been very frustrating for him. I know he doesn't enjoy uriniating on himself and does periodicly come up to me and say "stink-stink" when he urinates and does it consistently when he has a bowel movement. I am so proud of my little man. His younger brother, 2 y/o - Cameron, is always on the alert when does have a bowel movement. He comes up to me and says "OOOH....mommie....um... got stink-stink". It always leaves me laughing. And right behind Cameron is saying "stink-stink". I understand fully the work that has to go into potty training.

" E. " <patriciaeclark@...> wrote:

Thanks. I would like to point out also that abilities can be very scattered or "spotty." My son wasn't dry at night until he was 18, BUT he found his own job, has been employed at the same place for four years, and owns his own home, that HE arranged all the financing for.In many cases it seems easier to exercise the mind than the body when a person has autism.Patty Cowen wrote:> > It is an interesting problem, isn't it? To decide how to spend money > raised: for "curing" autism or for maintaining those with it who have > not been "cured". I suppose it all comes from your perspective. Right > now, while my child is young, I am all for every dollar being spent on > investigating a "cure". I'm sure, though, that when he is older, and if > he is not

"cured", I will wish for funds to help maintain his life in a > manner that is a good as it gets. Surely, this is a typical delimma for > all special needs people and their parents. I would say that raising > money to help figure out the cause is good, no matter what, because the > numer of autistics has increased so dramatically. No one wishes that > this problem continue to increase.> > Thank you, Patty, for pointing out that autistics don't "choose" not to > be potty trained. I'm surprised that someone on this list doesn't have > an understanding of that. My son, who is almost 7, isn't potty trained > either, and I am sure it isn't because he loves wearing a diaper and > sitting in poop from time to time before I realize he needs to be > changed, but is rather because he doesn't have sensations to warn him > that he has to go to the bathroom. I have seen

him naked, with pee > coming out of his body, with a look of total surprise. To those who > have had success with potty training, good for you. It is really > frustrating to those of us who have not had success in that arena for > judgments to be made that this is somehow intentional on the part of our > child.> > __________________________________________________