Re: Some thoughts from a self advocate

[Guest guest]

thank you both for sharing. Cindi

[Guest guest]

Okay, not that I need the debate to get going again...... this is

again why I object to advertisements for " Aspie social groups "

or " High functioning social groups " which inply and exclude some

individuals based on a DX. "

To quote Ari:

For instance, we can

> describe someone as a nonspeaking, categorization-focused autistic

> person who has anxiety issues - this is a lot more useful a

> description than saying " he or she has low-functioning or

> high-functioning autism " , which could mean any number of things and

> only really serves to rank people rather than provide useful

guidance

> on how to support them. "

Sorry but I cut and pasted Ari's words

here as just above this sentence.

Keywords " low vs High functioning " and " rank them " .

Now, hopefully some can understand what I said in the past, but was

not able to articulate as well as Ari. (Thanks Ari).

Now we have heard it from someone LIVING WITH IT HIMSELF. Can we at

least in our own community STOP doing this which insults some of us?

Diane S

>

> Hi all:

> I have had some very interesting conversations recently with a young

> man, Ari Ne'eman, who happens to have Aspbergers. I found his

> following comments intriguing and and insightful. He has given me

> permission to share his thoughts. He heads the Autistic Self

Advocacy

> Network, http://www.autisticadvocacy.org

> Ellen

>

> Re: (NOEWAIT) Whose Planet Is It Anyway posts on Change.org

> Survey with Medicaid Waiver Recommendation

>

> I generally don't subscribe to person-first language, actually, in

so

> far as I don't believe in a need to hold my autism and disability

> identity at arms length any more than I feel the need to hold my

> Jewish or male or American identities (I am not a person with

> Maleness, for instance). The label shouldn't be the problem - the

> stigma should be.

>

> I think one thing that is important is to separate between autism

and

> problems autistic people frequently have. When I was younger, I also

> used to self-injure, albeit in a different way (I suffered from a

> common compulsion many of us on the spectrum develop, the need to

> scratch and rip at skin and hair, which caused me a lot of

problems).

> However, that was a response to the stress and anxiety I felt at

> living in a world that didn't understand me and that I didn't

> understand all too often. The problem wasn't that I am on the

spectrum

> - the problem was the environment I found myself in.

>

> I think the best thing to do is to describe people on the basis of

> their behaviors and to ensure that we're not biasing our assessment

of

> whether or not a behavior is problematic. For instance, we can

> describe someone as a nonspeaking, categorization-focused autistic

> person who has anxiety issues - this is a lot more useful a

> description than saying " he or she has low-functioning or

> high-functioning autism " , which could mean any number of things and

> only really serves to rank people rather than provide useful

guidance

> on how to support them. In addition, we should acknowledge that some

> autistic traits are not bad ones and that normalcy should not be our

> focus. Communication is an objective good, yes, but the means that

> people seek for communication can be wide and diverse, if we abandon

> social bias. If someone communicates effectively through AAC, should

> we view them as inferior because they don't use traditional speech?

If

> someone doesn't make eye contact, should we insist that doing so is

an

> objective good despite the fact that the only reason that we

encourage

> it is because other people expect it? Abandoning the focus on cure

> doesn't mean not working to stop self-injury, it doesn't mean not

> working to empower communication (I would argue it means MORE

working

> to empower communication, actually, and in more effective fashions).

> It simply means acknowledging and accepting people for who they are

> and working with our patterns of development instead of against it.

We

> need to separate the means from the ends in so far as how we

approach

> autism education and service-delivery. This is the essence of

> accepting neurological diversity.

>

> Ari

>

>

> --

> Ari Ne'eman

> President

> The Autistic Self Advocacy Network

> 1660 L Street, NW, Suite 700

> Washington, DC 20036

> http://www.autisticadvocacy.org

> 732.763.5530

>

[Guest guest]

I agree, Diane, but then, it is a matter of choice how one views this and so

many other things in life...I have always been careful about people first

language, but now Ari is telling us it is irrelevant to him. I think diversity

and community are all about accepting our various differences AND accepting our

differing perspectives.

If one is respectful, it probably doesn't matter much if you say, person with

autism or autistic person...We probably spend too much time on semantics

debates.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: (NOEWAIT) Whose Planet Is It Anyway posts on Change.org

> Survey with Medicaid Waiver Recommendation

>

> I generally don't subscribe to person-first language, actually, in

so

> far as I don't believe in a need to hold my autism and disability

> identity at arms length any more than I feel the need to hold my

> Jewish or male or American identities (I am not a person with

> Maleness, for instance). The label shouldn't be the problem - the

> stigma should be.

>

> I think one thing that is important is to separate between autism

and

> problems autistic people frequently have. When I was younger, I also

> used to self-injure, albeit in a different way (I suffered from a

> common compulsion many of us on the spectrum develop, the need to

> scratch and rip at skin and hair, which caused me a lot of

problems).

> However, that was a response to the stress and anxiety I felt at

> living in a world that didn't understand me and that I didn't

> understand all too often. The problem wasn't that I am on the

spectrum

> - the problem was the environment I found myself in.

>

> I think the best thing to do is to describe people on the basis of

> their behaviors and to ensure that we're not biasing our assessment

of

> whether or not a behavior is problematic. For instance, we can

> describe someone as a nonspeaking, categorization-focused autistic

> person who has anxiety issues - this is a lot more useful a

> description than saying " he or she has low-functioning or

> high-functioning autism " , which could mean any number of things and

> only really serves to rank people rather than provide useful

guidance

> on how to support them. In addition, we should acknowledge that some

> autistic traits are not bad ones and that normalcy should not be our

> focus. Communication is an objective good, yes, but the means that

> people seek for communication can be wide and diverse, if we abandon

> social bias. If someone communicates effectively through AAC, should

> we view them as inferior because they don't use traditional speech?

If

> someone doesn't make eye contact, should we insist that doing so is

an

> objective good despite the fact that the only reason that we

encourage

> it is because other people expect it? Abandoning the focus on cure

> doesn't mean not working to stop self-injury, it doesn't mean not

> working to empower communication (I would argue it means MORE

working

> to empower communication, actually, and in more effective fashions).

> It simply means acknowledging and accepting people for who they are

> and working with our patterns of development instead of against it.

We

> need to separate the means from the ends in so far as how we

approach

> autism education and service-delivery. This is the essence of

> accepting neurological diversity.

>

> Ari

>

>

> --

> Ari Ne'eman

> President

> The Autistic Self Advocacy Network

> 1660 L Street, NW, Suite 700

> Washington, DC 20036

> http://www.autisticadvocacy.org

> 732.763.5530

>

[Guest guest]

I think the point is that we, as a community, should make efforts to avoid

furthering discrimination amongst our own. 

There have been myriad activities that my son Josh has been considered " too

disabled " to participate. I refer to activities created or organized

specifically for people with special needs. In the past, I would get so upset.

 In fact, it still bugs me today when it happens. 

(He relies on augmentative and alternative communication, has sensory issues and

battles ugly anxiety. He is difficult to motivate and finds it hard to focus for

more than a few minutes.) 

Pam

Western Springs

[Guest guest]

I did not feel Ari?is saying " People First " language is irrelevant.? I think he

is saying that in a world that is accepting of people's differences, we will

have no need for " People First " language.? And, to precede a label with the

words,? " person with ..., " does not make the label less negative or particularly

helpful or descriptive of the person.

Ari is quite an insightful person.

Christensen

Re: Re: Some thoughts from a self advocate

I agree, Diane, but then, it is a matter of choice how one views this and so

many other things in life...I have always been careful about people first

language, but now Ari is telling us it is irrelevant to him. I think diversity

and community are all about accepting our various differences AND accepting our

differing perspectives.

If one is respectful, it probably doesn't matter much if you say, person with

autism or autistic person...We probably spend too much time on semantics

debates.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: (NOEWAIT) Whose Planet Is It Anyway posts on Change.org

> Survey with Medicaid Waiver Recommendation

>

> I generally don't subscribe to person-first language, actually, in

so

> far as I don't believe in a need to hold my autism and disability

> identity at arms length any more than I feel the need to hold my

> Jewish or male or American identities (I am not a person with

> Maleness, for instance). The label shouldn't be the problem - the

> stigma should be.

>

> I think one thing that is important is to separate between autism

and

> problems autistic people frequently have. When I was younger, I also

> used to self-injure, albeit in a different way (I suffered from a

> common compulsion many of us on the spectrum develop, the need to

> scratch and rip at skin and hair, which caused me a lot of

problems).

> However, that was a response to the stress and anxiety I felt at

> living in a world that didn't understand me and that I didn't

> understand all too often. The problem wasn't that I am on the

spectrum

> - the problem was the environment I found myself in.

>

> I think the best thing to do is to describe people on the basis of

> their behaviors and to ensure that we're not biasing our assessment

of

> whether or not a behavior is problematic. For instance, we can

> describe someone as a nonspeaking, categorization-focused autistic

> person who has anxiety issues - this is a lot more useful a

> description than saying " he or she has low-functioning or

> high-functioning autism " , which could mean any number of things and

> only really serves to rank people rather than provide useful

guidance

> on how to support them. In addition, we should acknowledge that some

> autistic traits are not bad ones and that normalcy should not be our

> focus. Communication is an objective good, yes, but the means that

> people seek for communication can be wide and diverse, if we abandon

> social bias. If someone communicates effectively through AAC, should

> we view them as inferior because they don't use traditional speech?

If

> someone doesn't make eye contact, should we insist that doing so is

an

> objective good despite the fact that the only reason that we

encourage

> it is because other people expect it? Abandoning the focus on cure

> doesn't mean not working to stop self-injury, it doesn't mean not

> working to empower communication (I would argue it means MORE

working

> to empower communication, actually, and in more effective fashions).

> It simply means acknowledging and accepting people for who they are

> and working with our patterns of development instead of against it.

We

> need to separate the means from the ends in so far as how we

approach

> autism education and service-delivery. This is the essence of

> accepting neurological diversity.

>

> Ari

>

>

> --

> Ari Ne'eman

> President

> The Autistic Self Advocacy Network

> 1660 L Street, NW, Suite 700

> Washington, DC 20036

> http://www.autisticadvocacy.org

> 732.763.5530

>

[Guest guest]

Hi :

Suffice to say, I agree completely, that Ari is a remarkable thinker...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: (NOEWAIT) Whose Planet Is It Anyway posts on Change.org

> Survey with Medicaid Waiver Recommendation

>

> I generally don't subscribe to person-first language, actually, in

so

> far as I don't believe in a need to hold my autism and disability

> identity at arms length any more than I feel the need to hold my

> Jewish or male or American identities (I am not a person with

> Maleness, for instance). The label shouldn't be the problem - the

> stigma should be.

>

> I think one thing that is important is to separate between autism

and

> problems autistic people frequently have. When I was younger, I also

> used to self-injure, albeit in a different way (I suffered from a

> common compulsion many of us on the spectrum develop, the need to

> scratch and rip at skin and hair, which caused me a lot of

problems).

> However, that was a response to the stress and anxiety I felt at

> living in a world that didn't understand me and that I didn't

> understand all too often. The problem wasn't that I am on the

spectrum

> - the problem was the environment I found myself in.

>

> I think the best thing to do is to describe people on the basis of

> their behaviors and to ensure that we're not biasing our assessment

of

> whether or not a behavior is problematic. For instance, we can

> describe someone as a nonspeaking, categorization-focused autistic

> person who has anxiety issues - this is a lot more useful a

> description than saying " he or she has low-functioning or

> high-functioning autism " , which could mean any number of things and

> only really serves to rank people rather than provide useful

guidance

> on how to support them. In addition, we should acknowledge that some

> autistic traits are not bad ones and that normalcy should not be our

> focus. Communication is an objective good, yes, but the means that

> people seek for communication can be wide and diverse, if we abandon

> social bias. If someone communicates effectively through AAC, should

> we view them as inferior because they don't use traditional speech?

If

> someone doesn't make eye contact, should we insist that doing so is

an

> objective good despite the fact that the only reason that we

encourage

> it is because other people expect it? Abandoning the focus on cure

> doesn't mean not working to stop self-injury, it doesn't mean not

> working to empower communication (I would argue it means MORE

working

> to empower communication, actually, and in more effective fashions).

> It simply means acknowledging and accepting people for who they are

> and working with our patterns of development instead of against it.

We

> need to separate the means from the ends in so far as how we

approach

> autism education and service-delivery. This is the essence of

> accepting neurological diversity.

>

> Ari

>

>

> --

> Ari Ne'eman

> President

> The Autistic Self Advocacy Network

> 1660 L Street, NW, Suite 700

> Washington, DC 20036

> http://www.autisticadvocacy.org

> 732.763.5530

>

[Guest guest]

Mr. Ne'eman's remarks were intriguing.  I do have a different take on a few

points:

--------

I think the best thing to do is to describe people on the basis of

their behaviors and to ensure that we're not biasing our assessment of

whether or not a behavior is problematic. For instance, we can

describe someone as a nonspeaking, categorization- focused autistic

person who has anxiety issues - this is a lot more useful a

description than saying " he or she has low-functioning or

high-functioning autism " , which could mean any number of things and

only really serves to rank people rather than provide useful guidance

on how to support them.

----------I agree that descriptive language is more useful than labels, and I

certainly used descriptions a lot when Neal was little.  Nowadays, I often use a

hybrid when people ask what kind of disability he has.  " You haven't heard of

it, " I begin (because most of them have not heard of PDD), " but it's like

high-functioning autism. " My reasoning behind that is to indicate to NTs that

Neal is somewhat like whatever their image of autism is, but that he is not

totally like that image.  It's like saying, " Don't expect typical social skills,

but expect more than what you'd otherwise think. "   It's faster than asking them

what they think autism is and giving a tutorial.I'm not sure that high- or

low-functioning autism is a ranking in the eyes of NTs.  First, I doubt if very

many of those with low-functioning autism would be described that way by

parents.  Teachers and professionals, maybe, but not parents, who want to see

the best in their abilities and

potential.  But I think that giving a fuller description of what someone who is

low functioning does (or doesn't do) to an NT is going to sound different than

to those of us who are better versed.  It's likely to get a response from that

NT person, " Oh, well then, he's very limited in what he can do, isn't he? " I'm

mostly talking about giving information to the general public, because that's

where we'll get progress for those with disabilities, provided we are able to

change attitudes.  And in individual conversations about ourselves or loved

ones, the information we give is not so likely to cause the general public to

give individual support as it is likely to cause them to know how to relate. 

IMHO, before there is true support, there needs to be a

relationship.---------------

In addition, we should acknowledge that some

autistic traits are not bad ones and that normalcy should not be our

focus. Communication is an objective good, yes, but the means that

people seek for communication can be wide and diverse, if we abandon

social bias. If someone communicates effectively through AAC, should

we view them as inferior because they don't use traditional speech?

------------I totally agree on the example.  For some folks, it may take

practice to get used to communicating in this style.  And it's possible that a

few may find it frustrating to communicate with someone using AAC because of the

time lag in communication, but that doesn't mean that they view the person as

inferior.

------

If someone doesn't make eye contact, should we insist that doing so is an

objective good despite the fact that the only reason that we encourage

it is because other people expect it?

-----------Others expect it because it is common to all cultures that eye

contact indicates paying attention.  I have a relative who is somewhat visually

impaired and who taught blind students.  Even blind kids are taught to point

their noses at someone talking to them, because it's considered good manners to

indicate they are paying attention.  Do they hear better by pointing their nose

and eyes at the speaker?  No, but this lets the speaker feel that they are

listening. 

--------------------------------

Abandoning the focus on cure

doesn't mean not working to stop self-injury, it doesn't mean not

working to empower communication (I would argue it means MORE working

to empower communication, actually, and in more effective fashions).

It simply means acknowledging and accepting people for who they are

and working with our patterns of development instead of against it. We

need to separate the means from the ends in so far as how we approach

autism education and service-delivery. This is the essence of

accepting neurological diversity.

------------------------I like a lot of his points, because I do not think

autism has a " cure " .  But I think that working to improve skills and reduce

negatives is different than a " cure " .  With ordinary kids, teachers and parents

work to teach them reading, writing, math, and manners.  It is not fair to avoid

teaching these things to kids with disabilities, even if it's modified or takes

longer,Working to stop self-injury is essential.  Working to empower whatever

kind of communication someone can achieve is very, very, very important.  I'd

also say that working to help someone achieve a level of social skills is

crucial.  Without knowing how to converse, how to be appropriate (by a

comfortable standard), how to listen, etc., is going to help someone be less

lonely and have a chance at employment and self-determination.   -Gail 

[Guest guest]

Some very good points, Gail.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Some thoughts from a self advocate

Mr. Ne'eman's remarks were intriguing. I do have a different take on a few

points:

--------

I think the best thing to do is to describe people on the basis of

their behaviors and to ensure that we're not biasing our assessment of

whether or not a behavior is problematic. For instance, we can

describe someone as a nonspeaking, categorization- focused autistic

person who has anxiety issues - this is a lot more useful a

description than saying " he or she has low-functioning or

high-functioning autism " , which could mean any number of things and

only really serves to rank people rather than provide useful guidance

on how to support them.

----------I agree that descriptive language is more useful than labels, and I

certainly used descriptions a lot when Neal was little. Nowadays, I often use a

hybrid when people ask what kind of disability he has. " You haven't heard of

it, " I begin (because most of them have not heard of PDD), " but it's like

high-functioning autism. " My reasoning behind that is to indicate to NTs that

Neal is somewhat like whatever their image of autism is, but that he is not

totally like that image. It's like saying, " Don't expect typical social skills,

but expect more than what you'd otherwise think. " It's faster than asking them

what they think autism is and giving a tutorial.I'm not sure that high- or

low-functioning autism is a ranking in the eyes of NTs. First, I doubt if very

many of those with low-functioning autism would be described that way by

parents. Teachers and professionals, maybe, but not parents, who want to see

the best in their abilities and

potential. But I think that giving a fuller description of what someone who

is low functioning does (or doesn't do) to an NT is going to sound different

than to those of us who are better versed. It's likely to get a response from

that NT person, " Oh, well then, he's very limited in what he can do, isn't

he? " I'm mostly talking about giving information to the general public, because

that's where we'll get progress for those with disabilities, provided we are

able to change attitudes. And in individual conversations about ourselves or

loved ones, the information we give is not so likely to cause the general public

to give individual support as it is likely to cause them to know how to relate.

IMHO, before there is true support, there needs to be a

relationship.---------------

In addition, we should acknowledge that some

autistic traits are not bad ones and that normalcy should not be our

focus. Communication is an objective good, yes, but the means that

people seek for communication can be wide and diverse, if we abandon

social bias. If someone communicates effectively through AAC, should

we view them as inferior because they don't use traditional speech?

------------I totally agree on the example. For some folks, it may take

practice to get used to communicating in this style. And it's possible that a

few may find it frustrating to communicate with someone using AAC because of the

time lag in communication, but that doesn't mean that they view the person as

inferior.

------

If someone doesn't make eye contact, should we insist that doing so is an

objective good despite the fact that the only reason that we encourage

it is because other people expect it?

-----------Others expect it because it is common to all cultures that eye

contact indicates paying attention. I have a relative who is somewhat visually

impaired and who taught blind students. Even blind kids are taught to point

their noses at someone talking to them, because it's considered good manners to

indicate they are paying attention. Do they hear better by pointing their nose

and eyes at the speaker? No, but this lets the speaker feel that they are

listening.

--------------------------------

Abandoning the focus on cure

doesn't mean not working to stop self-injury, it doesn't mean not

working to empower communication (I would argue it means MORE working

to empower communication, actually, and in more effective fashions).

It simply means acknowledging and accepting people for who they are

and working with our patterns of development instead of against it. We

need to separate the means from the ends in so far as how we approach

autism education and service-delivery. This is the essence of

accepting neurological diversity.

------------------------I like a lot of his points, because I do not think

autism has a " cure " . But I think that working to improve skills and reduce

negatives is different than a " cure " . With ordinary kids, teachers and parents

work to teach them reading, writing, math, and manners. It is not fair to avoid

teaching these things to kids with disabilities, even if it's modified or takes

longer,Working to stop self-injury is essential. Working to empower whatever

kind of communication someone can achieve is very, very, very important. I'd

also say that working to help someone achieve a level of social skills is

crucial. Without knowing how to converse, how to be appropriate (by a

comfortable standard), how to listen, etc., is going to help someone be less

lonely and have a chance at employment and self-determination. -Gail