RE: NYU disabled ad campaign halted

[Guest guest]

That’s just sad to me.  So now, in order to keep everyone

happy, we’re going to have a bunch of sad, maladapted children who are

going to fall through the cracks all because people can’t understand that

the ad campaign was geared towards the undiagnosed?  I hate all this

politically correct crap.  My family was all the things that they said –

we were kidnapped and trapped in our own minds, until a diagnosis gave us the

freedom that is associated with knowledge.  This is just sad to me.  The ads

were pointing out what happens to these kids if they AREN’T diagnosed,

and what’s sad is that too many people with their feelings on their

sleeves are making it harder for innocent kids to get help.  Their kids already

are getting help – so I guess it doesn’t matter if they make it

impossible for everyone else.   

-:¦:-

(¯`'•.¸(¯`a Kathleen Simpson´¯)¸.•'´¯)-:¦:-

From:

aspires-relationships

[mailto:aspires-relationships ] On Behalf Of

Newland

Sent: Friday, December 21, 2007 9:05 PM

To: aspires-relationships

Subject: NYU disabled ad campaign halted

NYU disabled ad campaign

halted - Bowing to pressure, a New York University group

agreed Wednesday to yank a controversial ad campaign that drew attention to the

needs of the disabled with bizarre " ransom notes. " The NYU Child

Center said it was halting the campaign, which offended advocates with its

in-your-face approach to raising public awareness about mental illnesses.

Opposition to the aggressive campaign surged after the Daily News highlighted

the complaints last week. " We wanted a campaign that would ... serve

as a wakeup call, " said Dr. Harold Koplewicz, the center's director.

" Though we meant well, we've come to realize that we unintentionally hurt

and offended some people. " Advocates for the disabled declared

victory and called the battle an important milestone in the fight for disabled

rights. " It draws attention to the issue of respect for people with

disabilities, " said Ari Ne'eman of the Autistic Self-Advocacy

Network. The campaign included strange messages that portrayed illnesses

like autism and attention deficit disorder as a kidnapper seizing

children. " We have your son, " read one ad, scrawled in black

ink. " We will make sure he will no longer be able to care for himself or

interact socially as long as he lives. " The center called the edgy

ads a way of directing the public's attention to the " silent

epidemic " of mental illness, but parents and advocates called them

unfairly harsh. The ads were expected to run in magazines and on 200

kiosks and 11 billboards. Those that are already up will be pulled down soon, a

spokeswoman said.

http://www.nydailynews.com/news/2007/12/20/2007-12-200_nyu_disabled_ad_campaign_halted-1.html

[Guest guest]

a,

I thank you for having the courage to say what I

was thinking, too. The folks who created this ad

campaign were very well meaning and the folks who

fought it were also well meaning. However, while

it's all very good and wonderful that many AS

adults in our community are high functioning, it

really bothers me that some of our brethren try

to speak for all autistics. They seem to think

that these kids, left to their own devices, will

turn out just fine. But how??? Many DO NOT have

the rosy prognosis that we did, and without care

givers who jump through hoops of fire to give

them the life skills they need to survive, they

are doomed to a lifetime of abuse, misfortune,

loneliness and possibly incarceration or

institutionalization. Some will die like my

brother did, at age 28, of self-neglect.

What comes to mind is something Newland

posted awhile back - I think it was in a preface

to a newer book edited by Rodman. People

who don't live this have no idea the almost

inhuman toll that is being exacted of ordinary

people who love their children and are trying to

help their children, and are dealing with this alone.

Oh I know, I know, someone will probably be

offended by what I just said too - but, try

living in that family's shoes. I'm thinking about

a family in my circle of acquaintances that have

just split up and this is a huge loss all around.

It's a loss to their children, and a loss to the

community as this family gave so much, but now

they have to work overtime to support 2

households and they have dropped nearly all of

their volunteer committments. The dad in

particular seems very bitter, not the person I first met when I came here.

So much of this is because people DO hide the

issues their children have. There is no

meaningful help for them so there is no point in

further " red flagging " the children when all

there is in their future is discrimination in the

workplace and inappropriate medication. So

instead the family deals with it alone until the

family breaks, and then we all loose.

- Helen

At 09:44 PM 12/21/2007, Shwana wrote:

>That’s just sad to me. So now, in order to keep

>everyone happy, we’re going to have a bunch of

>sad, maladapted children who are going to fall

>through the cracks all because people can’t

>understand that the ad campaign was geared

>towards the undiagnosed? I hate all this

>politically correct crap. My family was all the

>things that they said – we were kidnapped and

>trapped in our own minds, until a diagnosis gave

>us the freedom that is associated with

>knowledge. This is just sad to me. The ads

>were pointing out what happens to these kids if

>they AREN’T diagnosed, and what’s sad is that

>too many people with their feelings on their

>sleeves are making it harder for innocent kids

>to get help. Their kids already are getting

>help – so I guess it doesn’t matter if they make

>it impossible for everyone else.

[Guest guest]

and Helen, There are ways to communicate all of this without offending any of the people who need help. When I saw the ad, I was really bewildered that an organization that promotes sensitivity to social issues would convey something that would be so offensive to so many- as a young adult, I would have been horribly offended by the ad- not to mention alienated and hurt. At this point (in large part thanks to this list), I can see the sides of this that you are presenting. Did I need hlep? I certainly did nad do, and I am now, well beyond childhood, taking advantage of it and growing. I would say, we do not have only a choice of black or white here-- the correct advertisement should be in color. Why not something that conveys difficulties in cross-cultural communications-- something to which the average NT adult can relate- and then a tie-in to autism? After all,

imagine that your child were able to learn Chinese- and spoke that- but not English? Wouldn't you want to take him or her to classes in English as a Second Language? As a member of the community, wouldn't you want to vote to provide funding for these kinds of classes, so that your neighbors could understand you? I wish that someone offered a class in Neurotypical-ish as a Second Language-- I am sure that many of us would sign up for NTSL 101. Helen Foisy wrote: a,I thank you for having the courage to say what I was thinking, too. The folks who created this ad campaign were very well meaning and the folks who fought it were also well meaning. However, while it's all very good and wonderful that many AS adults in our community are high functioning, it really bothers me that some of our brethren try to speak for all autistics. They seem to think that these kids, left to their own devices, will turn out just fine. But how??? Many DO NOT have the rosy prognosis that we did, and without care givers who jump through hoops of fire to give them the life skills they need to survive, they are doomed to a lifetime of abuse, misfortune, loneliness and possibly incarceration or institutionalization. Some will die like my brother did, at age 28, of self-neglect.What comes to mind is something Newland posted awhile back - I think

it was in a preface to a newer book edited by Rodman. People who don't live this have no idea the almost inhuman toll that is being exacted of ordinary people who love their children and are trying to help their children, and are dealing with this alone.Oh I know, I know, someone will probably be offended by what I just said too - but, try living in that family's shoes. I'm thinking about a family in my circle of acquaintances that have just split up and this is a huge loss all around. It's a loss to their children, and a loss to the community as this family gave so much, but now they have to work overtime to support 2 households and they have dropped nearly all of their volunteer committments. The dad in particular seems very bitter, not the person I first met when I came here.So much of this is because people DO hide the issues their children have. There is no meaningful help for

them so there is no point in further "red flagging" the children when all there is in their future is discrimination in the workplace and inappropriate medication. So instead the family deals with it alone until the family breaks, and then we all loose.- HelenAt 09:44 PM 12/21/2007, Shwana wrote:>That’s just sad to me. So now, in order to keep >everyone happy, we’re going to have a bunch of >sad, maladapted children who are going to fall >through the cracks all because people can’t >understand that the ad campaign was geared >towards the undiagnosed? I hate all this >politically correct crap. My family was all the >things that they said – we were kidnapped and >trapped in our own minds, until a diagnosis gave >us the freedom that is associated with >knowledge. This is just sad to me. The ads >were pointing out what happens to these kids if >they AREN’T

diagnosed, and what’s sad is that >too many people with their feelings on their >sleeves are making it harder for innocent kids >to get help. Their kids already are getting >help – so I guess it doesn’t matter if they make >it impossible for everyone else.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I think the reason why a “padded” campaign wouldn’t

work well is because this ad campaign was basically to be a wakeup call to the

parents who are ignoring their child’s problems.  Even in one of the

press releases, they stated that it was not describing an undiagnosed child,

but a child who grows up with the parents choosing to ignore a problem until

the child is no longer able to be helped.  Many of these sad children that you

see shooting up malls and schools were labeled with a “disorder”

AFTER their death – but why were the parents choosing to IGNORE the

problem when it could have been fixed?  Instead, it’s easier to bury your

head in the sand and pretend something isn’t there.  That’s when

these diseases hold these children hostage – and why?  Because the

parents don’t want to hear the message and when someone is brave enough

to say “screw being nice, let’s get real” they get their hand

slapped.  I wonder how many innocent children this campaign could have helped? 

I wonder how many are now going to end up worse off because we were trying to “play

nice.”

-:¦:-

(¯`'•.¸(¯`a Kathleen Simpson´¯)¸.•'´¯)-:¦:-

From:

aspires-relationships

[mailto:aspires-relationships ] On Behalf Of Princess

Sent: Saturday, December 22, 2007 11:17 AM

To: aspires-relationships

Subject: RE: NYU disabled ad campaign halted

and Helen,

There are ways to communicate all of this without offending

any of the people who need help. When I saw the ad, I was really

bewildered that an organization that promotes sensitivity to social issues

would convey something that would be so offensive to so many- as a young adult,

I would have been horribly offended by the ad- not to mention alienated and

hurt. At this point (in large part thanks to this list), I can see the

sides of this that you are presenting. Did I need hlep? I certainly

did nad do, and I am now, well beyond childhood, taking advantage of it and

growing. I would say, we do not have only a choice of black or white

here-- the correct advertisement should be in color.

Why not something that conveys difficulties in

cross-cultural communications-- something to which the average NT adult can

relate- and then a tie-in to autism? After all, imagine that your child

were able to learn Chinese- and spoke that- but not English?

Wouldn't you want to take him or her to classes in English as a Second

Language? As a member of the community, wouldn't you want to vote to provide funding

for these kinds of classes, so that your neighbors could understand you? I

wish that someone offered a class in Neurotypical-ish as a Second

Language-- I am sure that many of us would sign up for NTSL 101.

Helen Foisy wrote:

a,

I thank you for having the courage to say what I

was thinking, too. The folks who created this ad

campaign were very well meaning and the folks who

fought it were also well meaning. However, while

it's all very good and wonderful that many AS

adults in our community are high functioning, it

really bothers me that some of our brethren try

to speak for all autistics. They seem to think

that these kids, left to their own devices, will

turn out just fine. But how??? Many DO NOT have

the rosy prognosis that we did, and without care

givers who jump through hoops of fire to give

them the life skills they need to survive, they

are doomed to a lifetime of abuse, misfortune,

loneliness and possibly incarceration or

institutionalization. Some will die like my

brother did, at age 28, of self-neglect.

What comes to mind is something Newland

posted awhile back - I think it was in a preface

to a newer book edited by Rodman. People

who don't live this have no idea the almost

inhuman toll that is being exacted of ordinary

people who love their children and are trying to

help their children, and are dealing with this alone.

Oh I know, I know, someone will probably be

offended by what I just said too - but, try

living in that family's shoes. I'm thinking about

a family in my circle of acquaintances that have

just split up and this is a huge loss all around.

It's a loss to their children, and a loss to the

community as this family gave so much, but now

they have to work overtime to support 2

households and they have dropped nearly all of

their volunteer committments. The dad in

particular seems very bitter, not the person I first met when I came here.

So much of this is because people DO hide the

issues their children have. There is no

meaningful help for them so there is no point in

further " red flagging " the children when all

there is in their future is discrimination in the

workplace and inappropriate medication. So

instead the family deals with it alone until the

family breaks, and then we all loose.

- Helen

At 09:44 PM 12/21/2007, Shwana wrote:

>That’s just sad to me. So now, in order to keep

>everyone happy, we’re going to have a bunch of

>sad, maladapted children who are going to fall

>through the cracks all because people can’t

>understand that the ad campaign was geared

>towards the undiagnosed? I hate all this

>politically correct crap. My family was all the

>things that they said – we were kidnapped and

>trapped in our own minds, until a diagnosis gave

>us the freedom that is associated with

>knowledge. This is just sad to me. The ads

>were pointing out what happens to these kids if

>they AREN’T diagnosed, and what’s sad is that

>too many people with their feelings on their

>sleeves are making it harder for innocent kids

>to get help. Their kids already are getting

>help – so I guess it doesn’t matter if they make

>it impossible for everyone else.

 

Be a better friend, newshound, and know-it-all with Yahoo!

Mobile. Try

it now.

[Guest guest]

a, I agree that it is ridiculous to fail to help a child when one knows what is wrong. Still, let's use a bit of Theory of Mind --warning- is mine even correct?--I believe that many parents think that AS is socially unacceptable, and do not know how to disclose to get the help that they need, without getting both their child and their family stigmatized. Since the ad was aimed at them, why not educate professionals abnd the community about what is really involved with autism- to make the condition have a human face, so that people are not afraid of it? I believe that the fear actually undermines the need to disclose. As an undiagnosed adult, I had many social questions about what to do in particular

situations, how to interpret a situation, more (everyone here can well imagine). One well-meaning friend told me not to let others even know that I had these questions. I was bound by that for years and years. She meant as well as these parents- she did not want me to be stigmatized. Still, I have had to learn whom to ask, and how. There are ways to ask for help, so that one does not get stigmatized. I am still learning them I am beginning to have a support network (still lacking in a few places, but basically solid). Therefore, I can relate. I remember other ways to get attention that are not demeaning-- for Math Club in college, the poster said, in big letters, SEX! Underneath, it said: "Now that I have your attention..." Also,

is it really true that we cannot be helped beyond a certain developmental point? I am not at all sure that I believe that, and my personal experience does not bear this out at all. Still, I acknowledge that my faith may enable me to forgive where others find this difficult (not too sure why others find this difficult?), and that certain social developments can only occur when one is not afraid of being judged (and forgiveness helped me to overcome that fear). a Simpson wrote: I think the reason why a “padded” campaign wouldn’t work well is because this ad campaign was basically to be a wakeup call to the parents who are ignoring their child’s problems. Even in one of the press releases, they stated that it was not describing an undiagnosed child, but a child who grows up with the parents choosing to ignore a problem until the child is no longer able to be helped. Many of these sad children that you see shooting up malls and schools were labeled with a “disorder” AFTER their death – but why were the parents choosing to IGNORE the problem when it could have been fixed? Instead, it’s easier to bury your head in the sand and pretend something isn’t there. That’s when these diseases hold these children hostage – and why? Because the parents

don’t want to hear the message and when someone is brave enough to say “screw being nice, let’s get real” they get their hand slapped. I wonder how many innocent children this campaign could have helped? I wonder how many are now going to end up worse off because we were trying to “play nice.” -:¦:- (¯`'•.¸(¯`a Kathleen Simpson´¯)¸.•'´¯)-:¦:- From: aspires-relationships [mailto:aspires-relationships ] On Behalf Of Princess Sent: Saturday, December 22, 2007 11:17 AMTo: aspires-relationships Subject: RE: NYU disabled ad campaign halted and Helen, There are ways to communicate all of this without offending any of the people who need help. When I saw the ad, I was really bewildered that an organization that promotes sensitivity to social issues would convey something that would be so offensive to so many- as a young adult, I would have been horribly

offended by the ad- not to mention alienated and hurt. At this point (in large part thanks to this list), I can see the sides of this that you are presenting. Did I need hlep? I certainly did nad do, and I am now, well beyond childhood, taking advantage of it and growing. I would say, we do not have only a choice of black or white here-- the correct advertisement should be in color. Why not something that conveys difficulties in cross-cultural communications-- something to which the average NT adult can relate- and then a tie-in to autism? After all, imagine that your child were able to learn Chinese- and spoke that- but not English? Wouldn't you want to take him or her to classes in English as a Second Language? As a member of the community, wouldn't you want to vote to provide funding for these kinds of classes, so that

your neighbors could understand you? I wish that someone offered a class in Neurotypical-ish as a Second Language-- I am sure that many of us would sign up for NTSL 101. Helen Foisy <hfoisySASKTEL (DOT) NET> wrote: a,I thank you for having the courage to say what I was thinking, too. The folks who created this ad campaign were very well meaning and the folks who fought it were also well meaning. However, while it's all very good and wonderful that many AS adults in our community are high functioning, it really bothers me that some of our brethren try to speak for all autistics. They seem to think that these kids, left to their own devices, will turn

out just fine. But how??? Many DO NOT have the rosy prognosis that we did, and without care givers who jump through hoops of fire to give them the life skills they need to survive, they are doomed to a lifetime of abuse, misfortune, loneliness and possibly incarceration or institutionalization. Some will die like my brother did, at age 28, of self-neglect.What comes to mind is something Newland posted awhile back - I think it was in a preface to a newer book edited by Rodman. People who don't live this have no idea the almost inhuman toll that is being exacted of ordinary people who love their children and are trying to help their children, and are dealing with this alone.Oh I know, I know, someone will probably be offended by what I just said too - but, try living in that family's shoes. I'm thinking about a family in my circle of acquaintances that have just split up and

this is a huge loss all around. It's a loss to their children, and a loss to the community as this family gave so much, but now they have to work overtime to support 2 households and they have dropped nearly all of their volunteer committments. The dad in particular seems very bitter, not the person I first met when I came here.So much of this is because people DO hide the issues their children have. There is no meaningful help for them so there is no point in further "red flagging" the children when all there is in their future is discrimination in the workplace and inappropriate medication. So instead the family deals with it alone until the family breaks, and then we all loose.- HelenAt 09:44 PM 12/21/2007, Shwana wrote:>That’s just sad to me. So now, in order to keep >everyone happy, we’re going to have a bunch of >sad, maladapted children who are going to fall >through

the cracks all because people can’t >understand that the ad campaign was geared >towards the undiagnosed? I hate all this >politically correct crap. My family was all the >things that they said – we were kidnapped and >trapped in our own minds, until a diagnosis gave >us the freedom that is associated with >knowledge. This is just sad to me. The ads >were pointing out what happens to these kids if >they AREN’T diagnosed, and what’s sad is that >too many people with their feelings on their >sleeves are making it harder for innocent kids >to get help. Their kids already are getting >help – so I guess it doesn’t matter if they make >it impossible for everyone else. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Again, I agree with you, a. And I hope

does not take offence here as we do

understand what is saying (and in a

normal, sane, and AWARE world, she would be

correct) but what a is saying (if I

understand correctly) is that sometimes, in order

to " get people's attention " you need a

hard-hitting message, or else people will think

this is not intended for them, and " oh well, MY child is not like that .... "

Then we wind up with yet another news item like

the one Newland just posted about the 18

year old hacker who AS and has just gained

worldwide notoriety. This isn't the sort of

" poster child " for autism we want, but we are

going to be reading more stories like that if

people don't wake up and smell the coffee.

I don't want to slam my beloved parents on a

public list. Like all parents, they wanted what

was best for us. But perhaps because they were

too close to the situation, they did not see that

our brother was in dire need of full scale

intervention, not just a special class in a

regular school and monthly visits to a psychologist.

I damn some of the professionals my parents dealt

with, I damn some of the teachers, I damn some in

the community for supporting my parents in their

denial. My sisters and I saw clearly what he

needed, and we each, in turn tried to get him

help. There was a very good private school, that

while not for AS (who knew about AS back then)

would have been appropriate for him. We even

volunteered our own money to put him there. But

our parents thought we lacked faith in our

brother. They said, " all he needs is a dose of

reality " and " he's going to be an engineer. " He

tumbled through every crack because by the time

we were in a position where we could be his legal

guardians, he was too old for the services, and

those he was eligible for, he was too high

functioning to feel comfortable remaining committed to.

It's no different today. My friends and I see

families who are struggling with children who

have very obvious pervasive developmental

disorders, but they keep making excuses for the

children, and perhaps they are also being misled

by professionals. They probably don't have

awareness of ASDs and it's not something that we,

as casual acquaintances, are in a position to

" enlighten " them about. So it is for families

like that hard-hitting ads like the NYU campaign were intended to reach.

- Helen

At 11:25 AM 12/22/2007, a wrote:

>I think the reason why a “padded” campaign

>wouldn’t work well is because this ad campaign

>was basically to be a wakeup call to the parents

>who are ignoring their child’s problems. Even

>in one of the press releases, they stated that

>it was not describing an undiagnosed child, but

>a child who grows up with the parents choosing

>to ignore a problem until the child is no longer

>able to be helped. Many of these sad children

>that you see shooting up malls and schools were

>labeled with a “disorder” AFTER their death –

>but why were the parents choosing to IGNORE the

>problem when it could have been fixed? Instead,

>it’s easier to bury your head in the sand and

>pretend something isn’t there. That’s when

>these diseases hold these children hostage – and

>why? Because the parents don’t want to hear the

>message and when someone is brave enough to say

>“screw being nice, let’s get real” they get

>their hand slapped. I wonder how many innocent

>children this campaign could have helped? I

>wonder how many are now going to end up worse

>off because we were trying to “play nice.”

[Guest guest]

Helen, I feel so badly for you that your brother died- what was he like? Helen Foisy wrote: Again, I agree with you, a. And I hope does not take offence here as we do understand what is saying (and in a normal, sane, and AWARE world, she would be correct) but what a is saying (if I understand correctly) is that sometimes, in order to "get people's attention" you need a hard-hitting message,

or else people will think this is not intended for them, and "oh well, MY child is not like that ...."Then we wind up with yet another news item like the one Newland just posted about the 18 year old hacker who AS and has just gained worldwide notoriety. This isn't the sort of "poster child" for autism we want, but we are going to be reading more stories like that if people don't wake up and smell the coffee.I don't want to slam my beloved parents on a public list. Like all parents, they wanted what was best for us. But perhaps because they were too close to the situation, they did not see that our brother was in dire need of full scale intervention, not just a special class in a regular school and monthly visits to a psychologist.I damn some of the professionals my parents dealt with, I damn some of the teachers, I damn some in the community for supporting my parents in their

denial. My sisters and I saw clearly what he needed, and we each, in turn tried to get him help. There was a very good private school, that while not for AS (who knew about AS back then) would have been appropriate for him. We even volunteered our own money to put him there. But our parents thought we lacked faith in our brother. They said, "all he needs is a dose of reality" and "he's going to be an engineer." He tumbled through every crack because by the time we were in a position where we could be his legal guardians, he was too old for the services, and those he was eligible for, he was too high functioning to feel comfortable remaining committed to.It's no different today. My friends and I see families who are struggling with children who have very obvious pervasive developmental disorders, but they keep making excuses for the children, and perhaps they are also being misled by

professionals. They probably don't have awareness of ASDs and it's not something that we, as casual acquaintances, are in a position to "enlighten" them about. So it is for families like that hard-hitting ads like the NYU campaign were intended to reach.- HelenAt 11:25 AM 12/22/2007, a wrote:>I think the reason why a “padded” campaign >wouldn’t work well is because this ad campaign >was basically to be a wakeup call to the parents >who are ignoring their child’s problems. Even >in one of the press releases, they stated that >it was not describing an undiagnosed child, but >a child who grows up with the parents choosing >to ignore a problem until the child is no longer >able to be helped. Many of these sad children >that you see shooting up malls and schools were >labeled with a “disorder” AFTER their death – >but why were the parents choosing to IGNORE the

>problem when it could have been fixed? Instead, >it’s easier to bury your head in the sand and >pretend something isn’t there. That’s when >these diseases hold these children hostage – and >why? Because the parents don’t want to hear the >message and when someone is brave enough to say >“screw being nice, let’s get real” they get >their hand slapped. I wonder how many innocent >children this campaign could have helped? I >wonder how many are now going to end up worse >off because we were trying to “play nice.”

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi ,

I'm also retaining the text of your post because you make excellent

points too. It's so true that parents ARE fearful of disclosing if it

(and often it will) further stigmatize their child.

It is very true that often a label such as ADD actually takes the

onus OFF the schools to accommodate the child, and puts it all on the

child because he/she has the disorder. Whereas if they didn't know

about the label the ball would be in THEIR courts to teach to EVERY

child. This is why I often caution parents AGAINST disclosing unless

there are meaningful services in their area.

I just wish I knew HOW to " get their attention " when it comes to

spreading awareness of issues that can thwart a child's ability to

meet their full potential. You are very intuitive, positive, and

pro-active. Maybe you have some ideas <smile!>

I don't disagree with you and I hope you understand that, but I did

think the ad, as " in your face " as it was, DID serve a purpose, even

as short lived as it was. I appreciate we do not want to demean a

whole population but without awareness whole populations (such as my

late brother) continue to live out out very sad, very demeaning, and

possibly very short lives. We have to remember that there are many

that are less fortunate than us, and they don't have wherewithal to

parlay their intelligence into a livelihood, and they are invisible,

and without a voice.

- Helen

At 11:58 AM 12/22/2007, wrote:

>a,

>

>I agree that it is ridiculous to fail to help a child when one knows

>what is wrong. Still, let's use a bit of Theory of Mind --warning-

>is mine even correct?--I believe that many parents think that AS is

>socially unacceptable, and do not know how to disclose to get the

>help that they need, without getting both their child and their

>family stigmatized. Since the ad was aimed at them, why not educate

>professionals abnd the community about what is really involved with

>autism- to make the condition have a human face, so that people are

>not afraid of it? I believe that the fear actually undermines the

>need to disclose.

>

>As an undiagnosed adult, I had many social questions about

>what situations, how to interpret a situation, more (everyone here

>can well imagine). One well-meaning friend told me not to let

>others even know that I had these questions. I was bound by that

>for years and years. She meant as well as these parents- she did

>not want me to be stigmatized. Still, I have had to learn whom to

>ask, and how. There are ways to ask for help, so that one does not

>get stigmatized. I am still learning them I am beginning to have a

>support network (still lacking in a few places, but basically

>solid). Therefore, I can relate.

>

>I remember other ways to get attention that are not demeaning-- for

>Math Club in college, the poster said, in big letters,

>SEX! Underneath, it said: " Now that I have your attention... "

>

>

[Guest guest]

At 12:14 PM 12/22/2007, you wrote:

>Helen,

>I feel so badly for you that your brother died- what was he like?

>

I have been in and out all morning but have appreciated this

discussion and you and a are such articulate and thoughtful

writers. I can not possibly do justice to my brother in one, short

post. If diagnosed today he would be " textbook " AS - the doctors

would not even question it - if not in fact " textbook " high

functioning autism.

It was my youngest sister (a very generous NT soul) who, at age 13

volunteered with autistic children, and first raised the possibility

that our brother might be autistic. But this was in the early 70's

and who knew that autistics could be verbal back then? Not in our

part of the world!

My brother had multiple challenges, visibly developmentally delayed,

medically fragile, gross motor impairments, learning disabled, and

very, very in his own world. And yet, he was a very kind, gentle

dignified soul. He spoke ill of no one, blamed no one. He was far

more intelligent than his outward appearance would suggest. He died

20 years ago and I still miss him. Not to end this on a sad note,

though, it is for him that I continue to speak out - sometimes not

what folks want to hear, but I grew up watching this and in my real

life and not just my cyber life, I try to make people understand

everything that you DON'T read in those government pamphlets about

the human face of high functioning autism.

- Helen

[Guest guest]

Helen, I would share your frustration and anger and powerlessness to help, and I take your reaction to the ad as based on that- I do not feel any disagreement in that sense. Your words seem prefectly right to me. I have an idea or three. here is one that comes from having a computer that I would often describe as autistic: BAD PERIPHERALS? HUMAN COMPUTER REPAIR NEEDED? Help! My CPU works fine, but my interfaces do not! COMPUTER REPAIR: DOES YOUR (PRE-INSTALLED) HUMAN HARDWARE NEED TWEAKING? ADJUSTMENT? DO YOU OR YOUR CHILD FEEL AS IF YOU HAVE WINDOWS HARDWRE IN A MAC ENVIRONMENT? We work with the following problems: * Inadequate virtual memory You or your child cannot remember more than three instructions at

once. You or your child cannot understand when two people are talking at the same time. You or your child cannot do two unrelated taskas at once *Speaker Problems You or your child does not talk, or has difficulty processing spoken language *INTERNET difficulties You or your child has difficulty processing written language CLOCK not running properly You or your child has timing issues CHAT difficulties You or your child has social issues MOVIE DOWNLOAD too slow/ too inaccurate You or your child have visual processing issues CRASHES FREQUENTLY Trying to do too many things at once results in crashing your system SPYWARE You are too trusting, and you have

been led to believe things that hve made your life hard to operate! INADEQUATE SURGE PROTECTORS You or your child have sensory overload issues- taste, topuch, smell, sound, crowds, more-- LOW LEVEL LANGUAGE Were certain things never installed properly- such as instinctive knowledge of emotions? Coordination? There are patches that can be downloaded, but the computer has to be willing to accept them carefully andslowly, step by step. COME TO OUR COMPUTER REPAIR SHOP! Bring yourself or your child in for an evaluation of your internal hard drive and peripherals, and we can help! Learn to use that computer more effectively! Confidential-- pass code protected! helen Foisy wrote: Hi ,I'm also retaining the text of your post because you make excellent points too. It's so true that parents ARE fearful of disclosing if it (and often it will) further stigmatize their child.It is very true that often a label such as ADD actually takes the onus OFF the schools to accommodate the child, and puts it all on the child because he/she has the disorder. Whereas if they

didn't know about the label the ball would be in THEIR courts to teach to EVERY child. This is why I often caution parents AGAINST disclosing unless there are meaningful services in their area.I just wish I knew HOW to "get their attention" when it comes to spreading awareness of issues that can thwart a child's ability to meet their full potential. You are very intuitive, positive, and pro-active. Maybe you have some ideas <smile!>I don't disagree with you and I hope you understand that, but I did think the ad, as "in your face" as it was, DID serve a purpose, even as short lived as it was. I appreciate we do not want to demean a whole population but without awareness whole populations (such as my late brother) continue to live out out very sad, very demeaning, and possibly very short lives. We have to remember that there are many that are less fortunate than us, and they don't have wherewithal to

parlay their intelligence into a livelihood, and they are invisible, and without a voice.- HelenAt 11:58 AM 12/22/2007, wrote:>a,>>I agree that it is ridiculous to fail to help a child when one knows >what is wrong. Still, let's use a bit of Theory of Mind --warning- >is mine even correct?--I believe that many parents think that AS is >socially unacceptable, and do not know how to disclose to get the >help that they need, without getting both their child and their >family stigmatized. Since the ad was aimed at them, why not educate >professionals abnd the community about what is really involved with >autism- to make the condition have a human face, so that people are >not afraid of it? I believe that the fear actually undermines the >need to disclose.>>As an undiagnosed adult, I had many social questions about >what situations, how to

interpret a situation, more (everyone here >can well imagine). One well-meaning friend told me not to let >others even know that I had these questions. I was bound by that >for years and years. She meant as well as these parents- she did >not want me to be stigmatized. Still, I have had to learn whom to >ask, and how. There are ways to ask for help, so that one does not >get stigmatized. I am still learning them I am beginning to have a >support network (still lacking in a few places, but basically >solid). Therefore, I can relate.>>I remember other ways to get attention that are not demeaning-- for >Math Club in college, the poster said, in big letters, >SEX! Underneath, it said: "Now that I have your attention...">>

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hi ,

What you wrote is SO AMAZING! I hope maybe you have time to re-work this

and allow Newland to post your " ad campaign " as an

article in the files section of this list or even in the articles section

of her web-site. It's SO INSPIRED. Or maybe perhaps write a letter to the

folks who initiated this ad campaign - with your suggestion. Maybe you

should copywrite it first! <smile!> Really, this deserves wide

attention. This is very pro-active, in much the same way Lianne Holiday

Wiley and Carol Grey posted " the discovery of Aspie criteria "

which has inspired a generation of autism pioneers. , this is

great. I hope you have the time to do something further with this. Good

things could come out of it!

- Helen

At 12:45 PM 12/22/2007, Princess wrote:

Helen,

I would share your frustration and anger and powerlessness to help, and I

take your reaction to the ad as based on that- I do not feel any

disagreement in that sense. Your words seem prefectly right to

me. I have an idea or three. here is one that comes from

having a computer that I would often describe as autistic:

BAD PERIPHERALS? HUMAN COMPUTER REPAIR NEEDED?

Help! My CPU works fine, but my interfaces do not!

COMPUTER REPAIR: DOES YOUR (PRE-INSTALLED) HUMAN HARDWARE NEED

TWEAKING? ADJUSTMENT? DO YOU OR YOUR CHILD FEEL AS IF YOU

HAVE WINDOWS HARDWRE IN A MAC ENVIRONMENT?

We work with the following problems:

* Inadequate virtual memory

You or your child cannot remember more than three instructions at

once.

You or your child cannot understand when two people are talking at the

same time.

You or your child cannot do two unrelated taskas at once

*Speaker Problems

You or your child does not talk, or has difficulty processing spoken

language

*INTERNET difficulties

You or your child has difficulty processing written language

CLOCK not running properly

You or your child has timing issues

CHAT difficulties

You or your child has social issues

MOVIE DOWNLOAD too slow/ too inaccurate

You or your child have visual processing issues

CRASHES FREQUENTLY

Trying to do too many things at once results in crashing your system

SPYWARE

You are too trusting, and you have been led to believe things that hve

made your life hard to operate!

INADEQUATE SURGE PROTECTORS

You or your child have sensory overload issues- taste, topuch, smell,

sound, crowds, more--

LOW LEVEL LANGUAGE

Were certain things never installed properly- such as instinctive

knowledge of emotions? Coordination? There are patches that

can be downloaded, but the computer has to be willing to accept them

carefully andslowly, step by step.

COME TO OUR COMPUTER REPAIR SHOP!

Bring yourself or your child in for an evaluation of your internal hard

drive and peripherals, and we can help! Learn to use that computer

more effectively!

Confidential-- pass code protected!

[Guest guest]

Wow – I go put a 2 year old down for a nap and I miss one

heck of a conversation!

, I completely understand what you’re saying, and I

think we’re still looking at a completely different set of groups.  I’m

going to try to brainstorm a few groups and see if this makes sense.  Bare with

me :  There are those who have been formally diagnosed and getting treatment/learning/understanding

and accept the dx.  There are those who have been diagnosed formally who ignore

the dx and continue on.  There are those who, similar to you, are not formally

diagnosed, but have a pretty darn good idea what is going on who continue to

learn.  There are those who are not formally diagnosed who know something “just

isn’t right” but don’t have a clue where to start (so AS may

not even be on the radar screen).  And finally, there are those who think

everything is just fine and their (or their children’s) behavior is just

a phase that they’ll grow out of or that will go away or is normal.    I

think my assumption was that the ad campaign was geared only to that last group

– the ones who completely deny there is a problem. 

I guess also where I come from is being the mother of an AS

toddler, when I go to the DHS office or any other public medical facility, I

see these posters about this disease and that disease, some of them VERY

graphic with the same concept – “early detection.”  So for

me, this shock advertising is all around me – by the time your toddler is

5, you’ve been scared into believing that your child must have every

disease from asthma to RSV, but yet you don’t see parents getting up in

arms about some of the harsh and graphic posters about things like cerebral

palsy and the such. 

I also wonder how much of this has to do with the parents own

sense of shame.  Maybe that’s part of it.  I don’t feel bad for

Keelin for having AS because my husband I both have AS.  To me, Keelin (my son)

is not a different child because in our family, we’re all the same.  As

my husband says, he wears his AS “badge” proudly because it is a

facet of who he is, it doesn’t define him.  I think Helen is right in

that maybe some of the parents are just too close to the situation.  A friend

of mine put it in terms for me, that shocked me.  Her son has Down’s. 

She said that she used to get all upset when someone would say something bad

about having Down’s until her son told her to stop being ashamed of her –

that he’s not ashamed of himself, so she shouldn’t feel sorry for

him.  But he told her that when she gets upset and angry, it makes him think

that he SHOULD be ashamed.  And it also goes into the idea of if the message is

true.  If the message is false, that’s one thing.  But if the message is

true and we just don’t like that it’s being said, maybe we’re

too close to the situation and are carrying some emotional shame baggage?  My

mom used to say to me, “sometimes the truth hurts.”

Finally, I wonder if this is one of those “ouch”

moments.  Sometimes to grow, you feel growing pains.  I thought it was

interesting how MUCH of a reaction this got from the AS community, both NT and AS

alike.   And I wonder how the community will grow with this in mind.  Anita, I

agree that this controversy could have been used as a HUGE tool.  I think that’s

why I think it’s so unfortunate that it was taken away.  They say that

the number of cases in public mental health/medical services of teenagers goes

up dramatically when a large-scale act of violence occurs (Columbine, Omaha

Mall).  I think it sometimes takes a major wakeup call to get people to say “okay,

there’s a problem.”  And instead of using that tool on our side, we

just seem to be waiting for it to happen in a worse way. 

This is a great conversation!  Thank you all!

-:¦:-

(¯`'•.¸(¯`a Kathleen Simpson´¯)¸.•'´¯)-:¦:-

[Guest guest]

a, I knew there was something wrong with myself deep down, but I did not want to even admit to myself that I could not fix it and then just be normal. As a mother, I was terrified of my children's being discriminated against in school, and ultimately, having a psych record that would impact their rights -- I would never even have agreed to any testing, unless forced to do it. We need to make it clear to parents that they can get help without having to make this choice. If one of my children had been severely autistic, I might have gotten help anyway, but if one of my children had just been AS, I might not have been willing- a scary thought. This Ramson Notes campaign would have made it even harder for me to seek help. I finally checked it out when I could do so without fear of discrimination. I still worry about going public too quickly, before I am ready to deal with the discrimination I

expect to face. Nevertheless, you have a point. Many of my fears could have been from an inadequate theory of mind, and if an AS child has an NT parent, then an ad like this could be just the thing to get the parent's attention. a Simpson wrote: Wow – I go put a 2 year old down for a nap and I miss one heck of a conversation! , I completely understand what you’re saying, and I think we’re still looking at a completely different set of groups. I’m going to try to brainstorm a few groups and see if this makes sense. Bare with me : There are those who have been formally diagnosed and getting treatment/learning/understanding and accept the dx. There are those who have been diagnosed formally who ignore the dx and continue on. There are those who, similar to you, are not formally diagnosed, but have a pretty darn good idea what is going on who continue to learn. There are those who are not formally diagnosed who know something “just isn’t right” but don’t have a clue where to start (so AS may not even be on the radar screen). And finally, there are those who think everything is just fine and their (or their children’s)

behavior is just a phase that they’ll grow out of or that will go away or is normal. I think my assumption was that the ad campaign was geared only to that last group – the ones who completely deny there is a problem. I guess also where I come from is being the mother of an AS toddler, when I go to the DHS office or any other public medical facility, I see these posters about this disease and that disease, some of them VERY graphic with the same concept – “early detection.” So for me, this shock advertising is all around me – by the time your toddler is 5, you’ve been scared into believing that your child must have every disease from asthma to RSV, but yet you don’t see parents getting up in arms about some of the harsh and graphic posters about things like cerebral

palsy and the such. I also wonder how much of this has to do with the parents own sense of shame. Maybe that’s part of it. I don’t feel bad for Keelin for having AS because my husband I both have AS. To me, Keelin (my son) is not a different child because in our family, we’re all the same. As my husband says, he wears his AS “badge” proudly because it is a facet of who he is, it doesn’t define him. I think Helen is right in that maybe some of the parents are just too close to the situation. A friend of mine put it in terms for me, that shocked me. Her son has Down’s. She said that she used to get all upset when someone would say something bad about having Down’s until her son told her to stop being ashamed of her – that he’s not ashamed of

himself, so she shouldn’t feel sorry for him. But he told her that when she gets upset and angry, it makes him think that he SHOULD be ashamed. And it also goes into the idea of if the message is true. If the message is false, that’s one thing. But if the message is true and we just don’t like that it’s being said, maybe we’re too close to the situation and are carrying some emotional shame baggage? My mom used to say to me, “sometimes the truth hurts.” Finally, I wonder if this is one of those “ouch” moments. Sometimes to grow, you feel growing pains. I thought it was interesting how MUCH of a reaction this got from the AS community, both NT and AS alike. And I wonder how the community will grow with this in mind. Anita, I agree that this

controversy could have been used as a HUGE tool. I think that’s why I think it’s so unfortunate that it was taken away. They say that the number of cases in public mental health/medical services of teenagers goes up dramatically when a large-scale act of violence occurs (Columbine, Omaha Mall). I think it sometimes takes a major wakeup call to get people to say “okay, there’s a problem.” And instead of using that tool on our side, we just seem to be waiting for it to happen in a worse way. This is a great conversation! Thank you all! -:¦:- (¯`'•.¸(¯`a Kathleen

Simpson´¯)¸.•'´¯)-:¦:-

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi , Perhaps this response to your interesting remark is not entirely relevant, but having written it, I feel like posting it because it contains other good stuff. Any responses would teach me something. I know that this is true. But, remember that AS folk cannot learn social rules quickly without theory of mind. There is no framework for them, and then, it is excruciatingly hard to learn them. So, we must be willing to explain to our AS kids the theory of mind that sourrounds each rule that we want them to learn. I found many an NT friend unwilling or unable to do this- and I have come to understand that while most NTs have this theory of mind, they cannot readily translate it into words that are organized logically in such a way that an ASpie can understand them. We, for our part, do not even ask the right questions to get at the meaning. What helped me

act right the most, recently, was just getting the understanding that NTs really do read facial emotions and read eyes- that it is not just a metaphor- that there is a scientific basis. Also, I realized just how badly I read nonverbal cues relative to NTs. So, I deduced that I not only had to trust them but that i had to ask for help. I am only now getting to that level where I realize that in just making a joke about something, I can offend because the person is insecure about another aspect, and thinks I mean what he or she fears the most-- that I am hinting that something important is less than perfect. At least I can feel for the person I might have hurt, rather than fearing a negative reaction. I have just found this great software at AANE headquarters (actually, one of the staff located it at my reqesst), developed by Simon baron-Cohen, for reading emotion from faces. This is my new "work-out routine", as

it were- I have already learned much in one setting- the different looks of confusion and anger and fear- and I will keep practicing- a bit every week, if I can- till I get fairly proficient. I used to just ask everyone I knew, at intervals, if I had offended them. They asked me if it was anything specific. Of course, it wasn't- I just assumed that given an interval of time, I probably had. I wanted to apologize, and make amends- but of course, did not have a clue of what social errors I had made- just a statistical sense that I had made quite a few. this last summer, someone asked me why- and I told him about specific things he did that made me wonder- and then, explained, without mentioning AS, that I could not discern complex emotion from a face-- and that his words would mean everything to me. He has been happy to encourage me ever sinse in verbal ways, and in very clear non-vergal ways, and never acts funny at all (at least that I

can discern). To summarize, I believe that NTs need to realize that we are truly doing the best that we can, that we can truly learn, but that it has to be taken slowly. If I am on the phone, nobody minds stating exactly how he or she feels in detail (and also stating to whom I am speaking!). I can pass for NT on the phone. (Or, at least, I can fool myself- LOL!) I certainly get in far less trouble. People know that I cannot see their faces. I believe that NTs should begin by giving us, for free, what their true feelings are- but try to be encouraging at the same time- they need not be "blunt" or mean-spirited, but just clear. Since they can, they should be glad to see the little changes that signify the great effort we are putting in. Believe me, we will grow the fastest in an encouraging environment, and we are willing- at least I am.

Newland wrote: Me again: I believe that many parents think that AS is socially unacceptable... This is just me talking. I don't think that parents reject Autism, they reject BAD behavior that if they don't change wall bring BAD things for their kids in the future to them and society. Many folks LOVE others that see the world differently,

but reject bad behavior from anyone. Others??? Just me

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.