Re: Autism is a World

[Guest guest]

In a message dated 5/23/2005 12:03:12 P.M. Eastern Standard Time,

dan_canale@... writes:

Hi all,

I'm still processing this very interesting documentary (that aired on CNN

last night).

I was at a U2 concert last night, so missed it Dan. What's your assessment?

Donna

[Guest guest]

Thanks Dan...

Autism is a World

>

> Hi all,

>

> I'm still processing this very interesting documentary (that aired on CNN

> last night). I came across this online companion to the documentary that

> you might find interesting:

>

> http://www.cnn.com/CNN/Programs/presents/

>

> Dan

>

> __________________________________________________

>

[Guest guest]

My assessment? I think they were better in the 80s, but U2 is still great :-).

Bad jokes aside, I enjoyed this documentary a lot, although I don't know how

applicable the Sue Rubin's case is to Luca or others with Autism. If you missed

it, Sue is an unbelievably strong and courageous woman with Autism who went from

being almost completely non-verbal, and testing in the 30s in IQ, to being an

highly literate communicator (via keyboard held by an assistant) whose IQ now

tests at an above-average 133. Although she started with facilitated

communication, she now types under her own power.

Although she can now express highly sophisticated thoughts, on the outside she

hasn't really changed -- she still looks and acts like a low-functioning person

with autism. That, for me, was the most remarkable aspect of her story. Were it

not for this communication breakthrough you would never have any idea that she

was so intelligent and articulate. She is 26, but her verbal communication

skills and behaviors are quite similar to our Luca (who is 8) and she still has

all of the self-stim behaviors and obsessions of a person with heavy-duty

Autism. She enjoys repetitive play with water in a sink (she says the Autism

part of her mind takes over when she does these activities and the other part

goes on hold) and she still needs to carry around 3 spoons in one of her hands

to feel comfortable. At the same time, she wrote the documentary, goes to

college and has better written communication skills than most of us.

I think my personal " take away " from the documentary is that there is likely a

lot more going on inside Luca than meets the eye, and that I should always

expect that he understands more than we think and probably has a lot to say. We

just need to figure out how to help him say it.

Here are additional times/dates when CNN is rebroadcasting the documentary:

CNN Presents

Autism Is a World05/28/20053:00 PMCNNCNN Presents

Autism Is a World05/28/20058:00 PMCNNCNN Presents

Autism Is a World05/28/200511:00 PMCNNCNN Presents

Autism Is a World05/29/20052:00 AMCNN25CNN Presents

Autism Is a World05/29/20056:00 AMCNN

duffey48@... wrote:

In a message dated 5/23/2005 12:03:12 P.M. Eastern Standard Time,

dan_canale@... writes:

Hi all,

I'm still processing this very interesting documentary (that aired on CNN

last night).

I was at a U2 concert last night, so missed it Dan. What's your assessment?

Donna

[Guest guest]

In a message dated 5/23/2005 1:58:21 P.M. Eastern Standard Time,

dan_canale@... writes:

My assessment? I think they were better in the 80s, but U2 is still great

:-).

LOL Dan. Yea, that's what my 22 yo says.

<<I think my personal " take away " from the documentary is that there is

likely a lot more going on inside Luca than meets the eye, and that I should

always expect that he understands more than we think and probably has a lot to

say. We just need to figure out how to help him say it.>>

Yes, ditto. That's a good lesson for all parents and educators, and ANYONE

dealing with our kids.

Donna

[Guest guest]

I was chatting on the net about this movie with a low-functioning

autistic woman, and she was upset about how the woman in that movie had

apparently said she wants to be cured of autism and that the autistic

people who don't want a cure are all higher functioning than her, since

this woman I was talking to is actually lower functioning than the

woman in that movie.

>

> Hi all,

>

> I'm still processing this very interesting documentary (that aired on

CNN last night). I came across this online companion to the documentary

that you might find interesting:

>

> http://www.cnn.com/CNN/Programs/presents/

>

> Dan

>

> __________________________________________________

>

[Guest guest]

Here's what she says about " cure vs. acceptance " of autism:

(http://www.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/sue/noteb\

ook.html)

As a low-functioning autistic person who is still really awash in autism, I

actually am aligned with the cure group, although I will not personally benefit

if a cure is found. Low-functioning people are just trying to get through the

day without hurting, tapping, flailing, biting, screaming, etc. The thought of a

gold pot of a potion with a cure really would be wonderful.

Since this is not going to happen, I am resigned to living my life as it is -- a

constant struggle. When I have to mask autism in class it takes a tremendous

amount of effort. When I see the other students sitting calmly or chatting or

answering questions so easily, I'm really jealous. When I had to stop awful

autistic behaviors like head-banging, it took a tremendous amount of effort over

years. When I see people living normal lives, I am jealous. When I am really

lost in autism and can't inhibit behaviors that annoy staff, I deflect anger

from myself to them and create bad feelings. When I see how normal people

interact with their friends I am jealous.

As a person who lives with autism daily and will not live a normal life, I find

people who are high functioning and saying society should not look for a cure

offensive. They have no idea what our lives are like. Killing autism lets me

enjoy a life with great friends and allows me to go to college, but I must never

let down my guard or autism will take over. I don't want any more children to

live, as I must, in this constant state of war.

ettinashee wrote:

I was chatting on the net about this movie with a low-functioning

autistic woman, and she was upset about how the woman in that movie had

apparently said she wants to be cured of autism and that the autistic

people who don't want a cure are all higher functioning than her, since

this woman I was talking to is actually lower functioning than the

woman in that movie.

>

> Hi all,

>

> I'm still processing this very interesting documentary (that aired on

CNN last night). I came across this online companion to the documentary

that you might find interesting:

>

> http://www.cnn.com/CNN/Programs/presents/

>

> Dan

>

> __________________________________________________

>

[Guest guest]

Here is a response by Rita Rubin(Sue's mom) to an editorial that

raised questions about the documentary. She posted this on another

list that I am on.

I'm forwarding as is because it does give more detailed information

about Sue, her diagnosis, and her experiences that weren't covered in

the documentary--as she says, " Forty minutes was definitely not

enough time to address all the issues raised... "

Jerusalem Post Response

Ms. Brown raised some very good questions in her article " CNN

presents flawed look at autism " . Forty minutes was definitely not

enough time to address all the issues raised, so I will attempt to

answer some of those questions here.

First of all, regarding Sue's I.Q. shooting up from 29 to 133, why

assume that the original I.Q. test was accurate? Psychologists and

neurologists in our area no longer give them to people with autism

because the tests can't measure their I.Q. Our children not only

have problems with speech, but also with focus, perserveration,

impulse control, motor control, auditory and visual processing, and a

host of other things that interfere with obtaining an accurate I.Q.

Ms. Brown refers to Sue as an anomaly. It is true that the cause of

Sue's autism is unusual. She has an omission at chromosome 2q37,

which accounts for her small stature and some of her physical

characteristics. As for her diagnosis of autism, according to the

definition in the DSM IV, she is very typical of people with autism.

The difference is the opportunities she has

had. Throughout her life Sue was exposed to the same therapies as

many other autistic children - speech therapy, occupational therapy,

dance therapy, music therapy, equestrian therapy, vision therapy,

sensory integration therapy, cranial-sacral therapy, Feldenkrais, B-

12/magnesium vitamins, DMG, gluten free/casein free diet, assorted

vitamins and minerals based on extensive testing, SSRIs and

Anafrinil. Some things helped more than others, but nothing

significantly changed her behavior or cognitive abilities until she

was introduced to Facilitated Communication by the educational

psychologist when she was 13. Sue's education was typical too. She

attended Severely Handicapped special day classes on regular public

school campuses until she started high school. She was the first

student in the special education district who was introduced to

Facilitated Communication, a method of AAC, but far from the last.

Today, on any given day, there are about 250 children using this

method in some form in our school district to access toys,

participate in class activities and do grade level work. The

district and the adult agency that supports Sue " assume competence "

and try to furnish the supports so the students can be successful.

We have gotten away from blaming everything on " autistic behavior "

and looking more at movement dysfunction and sensory differences as

the cause of a lot of behavior.

Ms. Brown seems to have a problem with the fact that Sue doesn't

speak, has autistic behaviors, and still can do college work. She

concludes that Sue must be a savant. Sue is not a savant. She is a

hard worker and the product of a school system that helped her

succeed. Sue recognizes her limitations and is taking only one class

each semester because her communication is so slow an participate in

regular classes. Many people are using FC in the United States, but

it is usually isolated cases, not whole districts. In the future we

will be seeing many more success stories as children are introduced

to Facilitated Communication at an earlier age. Many of our

elementary school students are taking multiple choice tests without

physical support and essay assignments and exams with limited support.

Ms. Brown is under the impression that Sue sat up one day and started

writing brilliantly. If you remember in the film I showed her trying

to type " spinach " four months into her FC training and she did so

with great difficulty after many mistakes. Sue was so enmeshed in

autism her body, mind, and thoughts were very unorganized. It took

typing everyday in school and at home for her to organize her

thoughts. She first typed occasionally correct letters, then

words, then phrases, then sentences, and finally paragraphs. That

process took about six months. When she started high school the

following year, she typed all day in school, and about 3-4 hours

every night on homework and one day each weekend. Her ability to

focus on working increased from a few seconds to about an hour before

she needed a break. Even today, if she is stressed, she can only

focus for a few minutes before she runs off yelling.

The article says that it seems as if any attempt to help her overcome

her verbal and social difficulties ended when she began typing. Sue

still has speech therapy once a week, then has her staff reinforce

the therapy throughout the week. She also continues with Feldenkrais

once a week, which she feels helps organize her body. I don't know

what Ms. Brown means by " social difficulties " . Sue has very close

relationships with several people and often meets and greets

strangers. Why should her interactions have to look like ours?

The danger is not that the film will give false hope to parents and

make them complacent. The danger is the parents will realize that

school districts and adult agencies have not been serving their

children well and they will demand changes in " accepted knowledge "

and services, such as facilitated communication training for non- and

limited-verbal students and supported living for adults. It is true

that it is a triumph that Rubin can speak for herself and it is a

shame that others like her have not been given the opportunity so

they too could speak for themselves.

Rita Rubin

Sue's mom

brubin698@...

8620 Portafino Place

Whittier, CA 90603

USA

Christy Ashby

Inclusive Education and Disability Studies

Syracuse University

370 Huntington Hall

Syracuse, NY 13244

[Guest guest]

" I find people who are high functioning and saying society should not

look for a cure offensive. They have no idea what our lives are like. "

I think that's what that woman I was talking to found offensive. She

does know what the lives of low functioning autistics are like just

as well as Sue Robin does, since she is low functioning. Oh, and by

the way, she co-runs the http://www.autistics.org site, and her name

is Baggs. She's described some of her functioning problems

there, such as her extreme difficulty speaking. Also, I think she was

bothered by Sue Robin's idea that she must hide some harmless

autistic behaviours:

" When I have to mask autism in class it takes a tremendous amount of

effort ... When I am really lost in autism and can't inhibit

behaviors that annoy staff, I deflect anger from myself to them and

create bad feelings. "

Also, was saying that it's possible to treat some of the

problems like self-injury without curing autism, and that a great

deal of the unhappiness people like her and Sue Robin experience is

due to prejudice, such as the psychological effects of being

institutionalised(which describes in detail on her site) or

the pressure to hide harmless autistic behaviours, etc.

Since I am high functioning, I can't really say what it's like for

Baggs, Sue Robin and other low functioning autistics except by

reffering to their own writings. And you can't really tell from just

one person, either, you have to look at a bunch of people, and how

they feel about it. I know that Baggs has met other low

functioning autistics who oppose cures for similar reasons as she

does, including some of the other people who run her website.

> >

> > Hi all,

> >

> > I'm still processing this very interesting documentary (that

aired on

> CNN last night). I came across this online companion to the

documentary

> that you might find interesting:

> >

> > http://www.cnn.com/CNN/Programs/presents/

> >

> > Dan

> >

> > __________________________________________________

> >

[Guest guest]

I agree with a lot of what she says. For example, in hyperlexia,

there is a typical pattern of increase in IQ scores as they integrate

their speech skills with their more advanced reading skills.

Hyperlexic preschoolers typically score around 50-70, but older

hyperlexic kids usually score in the high average to gifted range

(gifted is above 130, high average is around 120-130). The fact that

she has 2q37 deletion piqued my interest, because I've researched

that deletion and thought people with 2q37 deletion were

developmentally delayed. She is an anomaly. I especially agree with

the statement " Why should her interactions have to look like ours? " .

> Here is a response by Rita Rubin(Sue's mom) to an editorial that

> raised questions about the documentary. She posted this on another

> list that I am on.

> I'm forwarding as is because it does give more detailed information

> about Sue, her diagnosis, and her experiences that weren't covered

in

> the documentary--as she says, " Forty minutes was definitely not

> enough time to address all the issues raised... "

>

> Jerusalem Post Response

>

> Ms. Brown raised some very good questions in her article " CNN

> presents flawed look at autism " . Forty minutes was definitely not

> enough time to address all the issues raised, so I will attempt to

> answer some of those questions here.

> First of all, regarding Sue's I.Q. shooting up from 29 to 133, why

> assume that the original I.Q. test was accurate? Psychologists and

> neurologists in our area no longer give them to people with autism

> because the tests can't measure their I.Q. Our children not only

> have problems with speech, but also with focus, perserveration,

> impulse control, motor control, auditory and visual processing, and

a

> host of other things that interfere with obtaining an accurate I.Q.

>

> Ms. Brown refers to Sue as an anomaly. It is true that the cause

of

> Sue's autism is unusual. She has an omission at chromosome 2q37,

> which accounts for her small stature and some of her physical

> characteristics. As for her diagnosis of autism, according to the

> definition in the DSM IV, she is very typical of people with

autism.

> The difference is the opportunities she has

> had. Throughout her life Sue was exposed to the same therapies as

> many other autistic children - speech therapy, occupational

therapy,

> dance therapy, music therapy, equestrian therapy, vision therapy,

> sensory integration therapy, cranial-sacral therapy, Feldenkrais, B-

> 12/magnesium vitamins, DMG, gluten free/casein free diet, assorted

> vitamins and minerals based on extensive testing, SSRIs and

> Anafrinil. Some things helped more than others, but nothing

> significantly changed her behavior or cognitive abilities until she

> was introduced to Facilitated Communication by the educational

> psychologist when she was 13. Sue's education was typical too.

She

> attended Severely Handicapped special day classes on regular public

> school campuses until she started high school. She was the first

> student in the special education district who was introduced to

> Facilitated Communication, a method of AAC, but far from the last.

> Today, on any given day, there are about 250 children using this

> method in some form in our school district to access toys,

> participate in class activities and do grade level work. The

> district and the adult agency that supports Sue " assume competence "

> and try to furnish the supports so the students can be successful.

> We have gotten away from blaming everything on " autistic behavior "

> and looking more at movement dysfunction and sensory differences as

> the cause of a lot of behavior.

>

> Ms. Brown seems to have a problem with the fact that Sue doesn't

> speak, has autistic behaviors, and still can do college work. She

> concludes that Sue must be a savant. Sue is not a savant. She is

a

> hard worker and the product of a school system that helped her

> succeed. Sue recognizes her limitations and is taking only one

class

> each semester because her communication is so slow an participate

in

> regular classes. Many people are using FC in the United States,

but

> it is usually isolated cases, not whole districts. In the future we

> will be seeing many more success stories as children are introduced

> to Facilitated Communication at an earlier age. Many of our

> elementary school students are taking multiple choice tests without

> physical support and essay assignments and exams with limited

support.

>

> Ms. Brown is under the impression that Sue sat up one day and

started

> writing brilliantly. If you remember in the film I showed her

trying

> to type " spinach " four months into her FC training and she did so

> with great difficulty after many mistakes. Sue was so enmeshed in

> autism her body, mind, and thoughts were very unorganized. It took

> typing everyday in school and at home for her to organize her

> thoughts. She first typed occasionally correct letters, then

> words, then phrases, then sentences, and finally paragraphs. That

> process took about six months. When she started high school the

> following year, she typed all day in school, and about 3-4 hours

> every night on homework and one day each weekend. Her ability to

> focus on working increased from a few seconds to about an hour

before

> she needed a break. Even today, if she is stressed, she can only

> focus for a few minutes before she runs off yelling.

>

> The article says that it seems as if any attempt to help her

overcome

> her verbal and social difficulties ended when she began typing.

Sue

> still has speech therapy once a week, then has her staff reinforce

> the therapy throughout the week. She also continues with

Feldenkrais

> once a week, which she feels helps organize her body. I don't know

> what Ms. Brown means by " social difficulties " . Sue has very close

> relationships with several people and often meets and greets

> strangers. Why should her interactions have to look like ours?

>

> The danger is not that the film will give false hope to parents and

> make them complacent. The danger is the parents will realize that

> school districts and adult agencies have not been serving their

> children well and they will demand changes in " accepted knowledge "

> and services, such as facilitated communication training for non-

and

> limited-verbal students and supported living for adults. It is

true

> that it is a triumph that Rubin can speak for herself and it is a

> shame that others like her have not been given the opportunity so

> they too could speak for themselves.

>

> Rita Rubin

> Sue's mom

>

> brubin698@e...

> 8620 Portafino Place

> Whittier, CA 90603

> USA

> Christy Ashby

> Inclusive Education and Disability Studies

> Syracuse University

> 370 Huntington Hall

> Syracuse, NY 13244

>