watch video Raise $$ for AUtism Speaks
jjcddg
charities. One of these charities is autism speaks. Watch the video
below and click on the ad at the end of the video and 49 cents will be
donated to autism speaks.
http://www.whatkindofworlddoyouwant.com/videos/view/id/227346
After you watch it, cut and paste this message. Email it to everyone
you know, post it on websites, forums etc. Or, make your own video
and upload it to begin raising money for charity.
Let's do it
Caitriona Mac Fhiodhbhuidhe
> The band Five for fighting has launched a website to raise money for 6
> charities. One of these charities is autism speaks.
Uhm.... I'm trying to remember. Is Autism Speaks a curbie group, or a
non-curbie group?
Kitten
HGJ
A curbie group.
MauiJNP
what does that mean? never heard that before
HGJ
A group that wants a cure for autism.
Gareeth
> The band Five for fighting has launched a website to raise money for 6
> charities. One of these charities is autism speaks. Watch the video
> below and click on the ad at the end of the video and 49 cents will be
> donated to autism speaks.
No thanks. They certainly don't speak for me. Now if there was a way to
subtract 49 cents from them that I would be interested in.
Gareeth
The Autist formerly known as
Goebells,
It's called the big lie technique.
--
şT
L'autisme c'est moi
"Space folds, and folded space bends, and bent folded space contracts and
expands unevenly in every way unconcievable except to someone who does not
believe in the laws of mathematics"
"Caitriona Mac Fhiodhbhuidhe" <st_brigids...@yahoo.com> wrote in
message news:1176089368....@q75g2000hsh.googlegroups.com...
Arak
wrote:
> A group of people who seem to have lernt there publicity tactics from Joseph
> Goebells,
>
> It's called the big lie technique.
Further to Larry's post, here is an example of the attitude of "Here's
how much it costs to keep these people up" a la Goebells:
http://www.flickr.com/photos/linnoinen/446350373/
Autism Speaks, however, seems to have cleaned up their act. Getting
the Word Out has gotten rid of the "cost" part of it, but they still
have a very dark and depressing site: http://www.gettingthewordout.org/home.php
It's not looking too good out there
Arak /|\
Laurence Reeves
No thank you.
I'm not even sure - I may have contributed? Does just watching the video
cause me to contribute? I had to watch it twice. I didn't see a
"contribute here" button.
I note that the "Therapy Schedule" allows him just 5 minutes for lunch
on Thursdays, and totals to 35 hours and 25 minutes overall. Whew! Poor kid.
Overall the video seemed quite pleasant. However, he looks rather
terrified at certain points during it - especially throughout the
sequence where someone is pushing a camera into his face when he's in
bed (normally, for most, a "safe" place).
In some shots, Michael appears to be being held in place for the
picture. Maybe I'm over-reacting?
I'm just about totally unable to decipher lyrics (of anything - I listen
to the music, the words become noise. That's just me). What do they say?
Finally, all the comments on the video are gushing praise. Does this
mean that the less than complimentary ones get deleted? I'm tempted to
add this as a comment, but I'm a wimp.
toto
<st_brigids...@yahoo.com> wrote:
>Uhm.... I'm trying to remember. Is Autism Speaks a curbie group, or a
>non-curbie group?
curbie
--
Dorothy
There is no sound, no cry in all the world
that can be heard unless someone listens ..
The Outer Limits
Early Spring
"Arak" <Arak.T...@gmail.com> wrote in message
news:1176125968.1...@y80g2000hsf.googlegroups.com...
> On Apr 9, 3:39 am, "The Autist formerly known as" <o...@ym.andius>
> wrote:
>> A group of people who seem to have lernt there publicity tactics from
>> Joseph
>> Goebells,
>>
>> It's called the big lie technique.
>
>
> Further to Larry's post, here is an example of the attitude of "Here's
> how much it costs to keep these people up" a la Goebells:
> http://www.flickr.com/photos/linnoinen/446350373/
I'm speachless.
>
> Autism Speaks, however, seems to have cleaned up their act. Getting
> the Word Out has gotten rid of the "cost" part of it, but they still
> have a very dark and depressing site:
> http://www.gettingthewordout.org/home.php
Wow, that site is terrible. Nothing like a bit of doom and gloom to boost
donations.
Early Spring
"Laurence Reeves" <l...@bergbland.info> wrote in message
news:fbedne6eucT...@pipex.net...
> jjcddg wrote:
>> The band Five for fighting has launched a website to raise money for 6
>> charities. One of these charities is autism speaks. Watch the video
>> below and click on the ad at the end of the video and 49 cents will be
>> donated to autism speaks.
>>
>> http://www.whatkindofworlddoyouwant.com/videos/view/id/227346
>>
>> After you watch it, cut and paste this message. Email it to everyone
>> you know, post it on websites, forums etc. Or, make your own video
>> and upload it to begin raising money for charity.
>>
>> Let's do it
>
I'm piggy backing on Laurence's post because I didn't get the op.
I don't get videos like this. Are these parents wanting a cure so no other
kid will have to endure all the therapies and needing help to do certain
things? There should be one child at a time on the trampoline and neither
child should have their shoes on. Pet peeve of mine. At least the
trampoline has a net. :)
The Autist formerly known as
Cos it don't mess the natural order of things and you don't have to wade
through what someone said before you get your answer.
--
şT
L'autisme c'est moi
"Space folds, and folded space bends, and bent folded space contracts and
expands unevenly in every way unconcievable except to someone who does not
believe in the laws of mathematics"
"Philip W Lee" <a...@lee-family.me.uk> wrote in message
news:89cl131tlgj34fnbk...@4ax.com...
> "HGJ" <svch...@yahoo.se> considered 8 Apr 2007 20:49:38 -0700 the
> perfect time to write:
>
> A: Because it messes up the order in which people normally read text.
> Q: Why is top-posting such a bad thing?
> A: Top-posting.
> Q: What is the most annoying thing on usenet and in e-mail?
>
> :-)
Caitriona Mac Fhiodhbhuidhe
wrote:
> Why is top posting such a good thing?
>
<shudder> Top-posting is eeeeevil!!
Kitten
Caitriona Mac Fhiodhbhuidhe
Laurence Reeves
Plus quoting someone's signature, when they have carefully prefixed it
with the "dash,dash,blank" line that prevents it becoming quoted.
Plus not using said "dash,dash,blank" line in the first place. :)
Caitriona Mac Fhiodhbhuidhe
I've got my email client set to do that for me. I've not yet figured
out how to get Google to do that. Until I can get back to a *real*
news server and news client...
Kitten
Laurence Reeves
A explanation of just what went on here is in order.
I glanced at the front page of "gettingthewordout" (which I won't bother
to repeat the URL of), and just "turned off". It has small grey text on
a black background, which I find difficult to read. It has "pretty"
banners. It has a depressing image. I tried to read it and just couldn't
get past the first paragraph. Oh... and it seems to be funded by Coca
Cola? I could go on (oooppss... I already have!)
I then followed your <http://www.gettingthetruthout.org> link, to a
similar site, but one that was easier to read the text on. I have
absolutely no idea how I managed to wade through the linear linked pages
- nine of them, before coming to the one with a single image on it. Oh
boy. Something on that image isn't quite right, said my pathetic little
brain.
Again, thank you.
HGJ
> Caitriona Mac Fhiodhbhuidhe wrote:
> > On Apr 9, 8:39 am, "Arak" <Arak.Thayl...@gmail.com> wrote:
> >> On Apr 9, 3:39 am, "The Autist formerly known as" <o...@ym.andius>
> >> wrote:
>
> >>> A group of people who seem to have lernt there publicity tactics from Joseph
> >>> Goebells,
> >>> It's called the big lie technique.
> >> Further to Larry's post, here is an example of the attitude of "Here's
> >> how much it costs to keep these people up" a la Goebells:http://www.flickr.com/photos/linnoinen/446350373/
>
> >> Autism Speaks, however, seems to have cleaned up their act. Getting
> >> the Word Out has gotten rid of the "cost" part of it, but they still
> >> have a very dark and depressing site:http://www.gettingthewordout.org/home.php
>
> >> It's not looking too good out there
>
>
> > Kitten
>
> Wow! Thank you so much for the link.
>
> A explanation of just what went on here is in order.
>
> I glanced at the front page of "gettingthewordout" (which I won't bother
> to repeat the URL of), and just "turned off". It has small grey text on
> a black background, which I find difficult to read. It has "pretty"
> banners. It has a depressing image. I tried to read it and just couldn't
> get past the first paragraph. Oh... and it seems to be funded by Coca
> Cola? I could go on (oooppss... I already have!)
>
> I then followed your <http://www.gettingthetruthout.org> link, to a
> similar site,
It's less similar than it looks at first sight.
> but one that was easier to read the text on. I have
> absolutely no idea how I managed to wade through the linear linked pages
> - nine of them, before coming to the one with a single image on it. Oh
> boy. Something on that image isn't quite right, said my pathetic little
> brain.
To understand what that site is really about, you're supposed to
follow the links even further, at least until you come to this page:
Laurence Reeves
> To understand what that site is really about, you're supposed to
I assure you, I read the entire site, and downloaded the videos. This is
why I was thanking Kitten for the link. I suspect I was trying to be
subtle, which is not one of my strongest suits. :)
Caitriona Mac Fhiodhbhuidhe
I got your point. :-) But then again, I seem to have difficulty
being understood by others as well. Maybe that's why I understood
you. ;-)
Kitten
HGJ
> On Apr 9, 3:39 am, "The Autist formerly known as" <o...@ym.andius>
> wrote:
>
> > A group of people who seem to have lernt there publicity tactics from Joseph
> > Goebells,
>
> > It's called the big lie technique.
>
> Further to Larry's post, here is an example of the attitude of "Here's
> how much it costs to keep these people up" a la Goebells:http://www.flickr.com/photos/linnoinen/446350373/
More about that propaganda poster and the "euthanasia" programme of
the Nazis (in German):
http://www.dhm.de/lemo/html/wk2/holocaust/euthanasie/index.html
John Jones
How can autism 'speak' you dozo. It's a disease isn't it?
Jeremy
> <shudder> Top-posting is eeeeevil!!
I bottom-post on usenet and top-post in emails. What does that make
me? :P
Jeremy
Terry Jones
A "sandwich" poster? :)
--
Terry
MauiJNP
>> > A curbie group.
>>
>> what does that mean?
>
> A group that wants a cure for autism.
>
ok, so what does a non-curbie group want?
Matt MacDonald
news:fPSdnTPQpvrMuoHb...@ptd.net:
Acceptance and understanding, not eugenics.
MauiJNP
>>>> > A curbie group.
>>>>
>>>> what does that mean?
>>>
>>> A group that wants a cure for autism.
>>>
>>
>> ok, so what does a non-curbie group want?
>>
>
> Acceptance and understanding, not eugenics.
ok, I see. what is a group called when they want both acceptance,
understanding AND a cure?
Matt MacDonald
If they are promoting the grieving mentality, they are not
promoting acceptance. Or do you have one in mind that doesn't do
that?
Caitriona Mac Fhiodhbhuidhe
Corn-fused.
Kitten
MauiJNP
no group in mind. I just think you can promote the understanding &
acceptance of the disorder and also want to find a way to help those
individuals in the spectrum ("cure", though I wouldn't use that word).
Terry Jones
>> If they are promoting the grieving mentality, they are not
>> promoting acceptance. Or do you have one in mind that doesn't do
>> that?
>
>no group in mind. I just think you can promote the understanding &
>acceptance of the disorder and also want to find a way to help those
>individuals in the spectrum ("cure", though I wouldn't use that word).
There's a great deal of difference between "help" and "curebie" (not
sure how to spell the latter though :)
Often (though not always) this type of "thinking" is also associated
with simplistic "explanations" and "magic bullet" "treatments".
And likewise the sort of "help" which concentrates on normalisation
(acting like an NT), rather than *function* - So even when "help" is
offered, it tends to ignore the priorities of those whom it is
supposed to be "helping".
It's rather like providing a homeless person with a suit so they will
look OK at job interviews, when their most urgent needs are food and
shelter.
Except that these "suits" aren't even free, but impose a "cost" on the
recipient.
So while it's not a simple "either / or" situation, there is a general
cluster of thinking / mindsets which are on the whole unwanted,
misdirecting of resources, and even harmful.
--
Terry
PromaBoss
but i also see for some its not a dissabiltiy
so do i want a cure
yes
do i want acceptance
yes
so the poster asking if you want both is quite valid and how i feel
same with any dissabiltiy
i dont want people to treat the thalidomide people badly but would i then be
happy to have more ?
no
i think both cureby and non cureby need to worrk togwether in acceptance of
those with and help and support in all areas and that means social beneftis
and support groups as well as employment/housing
but welll i would want to rid most illenesess
i want cancers got rid of and curred ??
yet some people have there cancer and are stronger with it and enjoy it in
some way,so am i wrrong in wanting rid of it?
no i want rrid of all ilneeses and to me aspergers and
adhd/dyspraxia/dyslexia are illnesses
if we said we just want acceptance and treated as others then surely we
shjould not be claiming disabled suport in anyway??
in fact why would we need a support grroup like this and others,as we arre
effctively saying we have problmes with who we are.
so its a bit confusing thise whole issue we want acceptance of any illness
or disability surely but we also want to rid the world of suffering for
those who suffer,but then if we did we would lose out on the determined
athlete with no legs or the aspergerrs scientist discoverrign something new
and wonderful
all disabilites can crreate in some great things but not in all where do we
ddraw the line??
so personally speaking yes i wiuld like not to be apsergers/adhd and so on
on one level,another level then hey its me and i dot want to be like otherrs
anyway
as usual decisions for me are difficult everyone is fraght with is it right
or wrong?
arent you and i matt grieving both of us dont appear to be happy with our
lot in life so whats wrong with seeing it that way,i know its been diffcult
for parents having a kid who cant do the things others do
and yes they too grieve and i see nothing wrong with that.
give me an hundrred negative people over positivity any day i aboslutely
abhor positvie everyone can do everything peopple
regards paul
"Matt MacDonald" <mattma...@freeuk.com> wrote in message
news:Xns990F17BA4EC76ma...@62.253.170.163...
PromaBoss
i do object to that
i am doing a self assertiveness course at moment for LD
and its not really my thing as again its all about
"welll you need to take not of eye /face and body language"
when i say i dont like to its a case of i am supposed to
and i cant be angry about things and have to work through the issues andb no
understsnsding that yes sometimes i can sometimes i am so overloaded i cant
no real idea of how i as an adhd/aspie is
"Terry Jones" <terry...@beeb.net> wrote in message
news:rd2p135e8itt4m8im...@4ax.com...
Kerry
<st_brigids_gate_f...@yahoo.com> wrote:
> On Apr 8, 9:36 pm, "jjcddg" <jjc...@yahoo.com> wrote:
>
> > The band Five for fighting has launched a website to raise money for 6
> > charities. One of these charities is autism speaks.
>
> non-curbie group?
>
> Kitten
I don't know, around here Autism SCREAMS!
Kerry
(hope that did not hurt anyone's ears)
Jeremy
> ok, I see. what is a group called when they want both acceptance,
> understanding AND a cure?
A paradox.
Jeremy
Jeremy
> understanding AND a cure?
A paradox.
Jeremy
Griff
> How can autism 'speak' you dozo. It's a disease isn't it?
>
No, it's a neurological difference in brain wiring.
What's your problem?
Griff
Griff
a disease anyway?
Griff
John Jones
So why is it only the 'autist' has the difference? A difference is
SHARED you dozo.
Terry Jones
wrote:
>Unrealistic, since you can't cure a neurological difference and it isn't
>a disease anyway?
Which is probably why people with this sort of mindset are attracted
either to "causes" like mercury which they "treat" with chelation - or
to interventions like ABA, which are too often presented as
"normalising" behaviour and capabilities to the point where you
"couldn't tell that they [their 'post children'] had been autistic".
--
Terry
MauiJNP
> Which is probably why people with this sort of mindset are attracted
> either to "causes" like mercury which they "treat" with chelation - or
> to interventions like ABA, which are too often presented as
> "normalising" behaviour and capabilities to the point where you
> "couldn't tell that they [their 'post children'] had been autistic".
>
are you against ABA and other behavioral interventions?
Griff
I am absolutely against ABA. All it does is increase stress and anxiety
in the autist. It's also been shown to contribute to post-traumatic
stress disorder in adult autistics who are survivors of ABA.
Get rid of it.
Griff
MauiJNP
I do behavior modification and I am a big fan of it. I don't do strict ABA
though so I can't really speak either way about that but I think behavior
modification is a very good thing.
Griff
When your behavior-modified kids come back to you as adults and tell you
how your behavior modification made them tense, afraid, and unable to
cope, what will you say to them? Will you believe them? Do you have any
proof that behavior mod is a good thing?
Griff
MauiJNP
>>>>> either to "causes" like mercury which they "treat" with chelation - or
>>>>> to interventions like ABA, which are too often presented as
>>>>> "normalising" behaviour and capabilities to the point where you
>>>>> "couldn't tell that they [their 'post children'] had been autistic".
>>>>>
>>>>
>>>> are you against ABA and other behavioral interventions?
>>> I am absolutely against ABA. All it does is increase stress and anxiety
>>> in the autist. It's also been shown to contribute to post-traumatic
>>> stress disorder in adult autistics who are survivors of ABA.
>>>
>>> Get rid of it.
>>>
>>
>> I do behavior modification and I am a big fan of it. I don't do strict
>> ABA though so I can't really speak either way about that but I think
>> behavior modification is a very good thing.
>>
>>
>
> When your behavior-modified kids come back to you as adults and tell you
> how your behavior modification made them tense, afraid, and unable to cope
>
I strongly believe that won't happen because I don't think that's what they
are feeling and it doesn't make them that way. I've work with verbal and
expressive kids (PDD kids, not severe autism) and I've worked with them for
long enough to be able to recognize how they are feeling at different times.
They also are very aware of feelings and able to describe specifics to how
their body feels at different times so even if they couldn't label the
feeling exactly (happy, frustrated, afraid, etc), I'd know what is going on
with them ("my head feels hot and full", "there's a very strange feeling in
my stomach", etc).
Also, the work that I am doing is helping the kids cope better and its easy
to recognize see when you see it first hand.
>
>Will you believe them?
unless they give me a reason not to, I would but I don't think that will
happen
>
>Do you have any proof that behavior mod is a good thing?
>
yes, do you have any proof its not. If so, please provide it as it would be
of interest to me.
Gareeth
>> >
>
> are you against ABA and other behavioral interventions?
I am not totally against either of those although traditional ABA yes I am
against. I think behavioural interventions do get results and not just for
people with autism but for almost anything but nothing jusitifes putting a
child through the equivalent of a work week to do it.
Gareeth
Terry Jones
>>Do you have any proof that behavior mod is a good thing?
>>
>
>yes, do you have any proof its not. If so, please provide it as it would be
>of interest to me.
What do you think happed to the older, often undiagnosed autistics? It
wasn't ABA, but it was certainly an attempt to modify our behaviours
based on positive and negative reinforcements.
It may be anecdotal evidence, but it is sufficient to raise
"reasonable doubt" - And it wouldn't be just anecdotal if the
proponents of these techniques had the scientific integrity to study
the results of these "natural experiments".
Criticisms of current bmod (including ABA);
It's commonly based on "outsider's" priorities, not the priorities of
the individuals it claims to "help".
It's often "oversold" in terms of the claims made for it - both in
terms of scope, and in terms of outcomes (i.e. the lack of credible
long term follow-up).
And overused / inappropriately used, for instance to "address"
behaviours which result from other causes (e.g. sensory issues).
It totally fails to address question of the "cost" to the person
trained in this way - That is children are taught *to do*, but they
are not taught *how* to do in a manner which is "affordable" /
sustainable given their different neurology.
This appears to be an intrinsic problem with "black box" behavioural
approaches, since it is an area which the technique is basically not
designed to consider.
You wouldn't use a behavioural approach to try and make a
(neurologically) blind person see, or to make a (neurologically) deaf
person hear - so why use it with autism? So what is the *technical*
basis for believing that it is appropriate for people with
neurological differences?
--
Terry
MauiJNP
>but nothing jusitifes putting a child through the equivalent of a work week
>to do it.
>
I do agree that some people overdo it with hours, especially when the kid is
in several different programs, like Speech, OT, PT, ABA, and "this that and
the other thing". I agree having so much is not good too
MauiJNP
>>>Do you have any proof that behavior mod is a good thing?
>>>
>>
>>yes, do you have any proof its not. If so, please provide it as it would
>>be
>>of interest to me.
>
> What do you think happed to the older, often undiagnosed autistics?
I have a 32 year old relative who is exactly that, an adult undiagnosis
autistic individual so I know exactly where they can end up. And its not
what I would want for my children or the one's I work with.
> Criticisms of current bmod (including ABA);
>
> It's commonly based on "outsider's" priorities, not the priorities of
> the individuals it claims to "help".
>
is a parent an outsider?
>
> And overused / inappropriately used, for instance to "address"
> behaviours which result from other causes (e.g. sensory issues).
>
what exactly are you saying here? what is an inappropriate way to address
these issues? what is appropriate?
> It totally fails to address question of the "cost" to the person
> trained in this way - That is children are taught *to do*, but they
> are not taught *how* to do in a manner which is "affordable" /
> sustainable given their different neurology.
>
why exactly would you say that? what are you getting at here
> This appears to be an intrinsic problem with "black box" behavioural
> approaches, since it is an area which the technique is basically not
> designed to consider.
>
huh?
>
> You wouldn't use a behavioural approach to try and make a
> (neurologically) blind person see, or to make a (neurologically) deaf
> person hear - so why use it with autism? So what is the *technical*
> basis for believing that it is appropriate for people with
> neurological differences?
>
Blind and deaf people are taught to communicate and interact with their
world, even though they are blind/deaf. Don't autistic individuals
deserve the same chance to learn how to communicate and interect with their
world? You seem to suggest they don't and that they should just be left
without any tools/skills and in a world of their own. I don't see how that
will benefit anyone.
Caitriona Mac Fhiodhbhuidhe
According to some folks in another group, where this sort of thing is
being discussed, if it's in the DSM, it's a disease. Oi!
Kitten
Caitriona Mac Fhiodhbhuidhe
Griff, it's a troll.
Kitten
Griff
> I strongly believe that won't happen because I don't think that's what they
> are feeling and it doesn't make them that way. I've work with verbal and
> expressive kids (PDD kids, not severe autism) and I've worked with them for
> long enough to be able to recognize how they are feeling at different times.
> They also are very aware of feelings and able to describe specifics to how
> their body feels at different times so even if they couldn't label the
> feeling exactly (happy, frustrated, afraid, etc), I'd know what is going on
> with them ("my head feels hot and full", "there's a very strange feeling in
> my stomach", etc).
>
> Also, the work that I am doing is helping the kids cope better and its easy
> to recognize see when you see it first hand.
You "strongly believe." You "don't think." How do you know? I want to
know how you KNOW. If you only "believe" and "think," that's not
knowing, and it's not good enough, and you're risking these kids' future
mental stability based on your unsupported hunches.
>> Do you have any proof that behavior mod is a good thing?
>>
>
> yes, do you have any proof its not. If so, please provide it as it would be
> of interest to me.
My proof: http://users.1st.net/cibra/index.htm
That's one proof. When you've read the entire site, let me know.
Griff
Griff
>> Criticisms of current bmod (including ABA);
>>
>> It's commonly based on "outsider's" priorities, not the priorities of
>> the individuals it claims to "help".
>>
>
> is a parent an outsider?
Yes.
>
>
>> And overused / inappropriately used, for instance to "address"
>> behaviours which result from other causes (e.g. sensory issues).
>>
>
> what exactly are you saying here? what is an inappropriate way to address
> these issues? what is appropriate?
What is appropriate is allowing us to be autistic, instead of demanding
that we become fake NT's. Behaviorism is abuse, plain and simple. Stop
demanding that we look you in the eyes, that we stop rocking and
spinning, that we stop being ourselves.
>
>
>> It totally fails to address question of the "cost" to the person
>> trained in this way - That is children are taught *to do*, but they
>> are not taught *how* to do in a manner which is "affordable" /
>> sustainable given their different neurology.
>>
>
> why exactly would you say that? what are you getting at here
Ever hear of post-traumatic stress disorder? It's extremely common among
autistics who have been put through behaviorist training such as ABA and
behavior modification "techniques."
>> This appears to be an intrinsic problem with "black box" behavioural
>> approaches, since it is an area which the technique is basically not
>> designed to consider.
>>
>
> huh?
Behaviorism assumes that the motivations or feelings a person has are
not important, only the behavior and the results - that the reasons why
a person does something are meaningless and inside a "black box" in the
mind, and therefore irrelevant. By the way, behaviorism has been
debunked, back in the 1960s, by a man named Garcia.
http://www.massagetherapy.com/articles/index.php/article_id/429 has a
description of his experiment. Behaviorism DOES NOT WORK.
It does not make the autistic "not autistic." It only makes him or her
ACT "not autistic," at a huge emotional and psychological cost, and
leads to breakdowns when the facade can no longer be maintained. Not
maintaining the facade often leads to aversives (punishment), so the
autistic, like anyone being punished for things that come naturally to
them and are not harmful to themselves or others, lives in fear - more
so than abused NTs who can at least see the warning signs of raised
voices and angry faces!
>> You wouldn't use a behavioural approach to try and make a
>> (neurologically) blind person see, or to make a (neurologically) deaf
>> person hear - so why use it with autism? So what is the *technical*
>> basis for believing that it is appropriate for people with
>> neurological differences?
>>
>
> Blind and deaf people are taught to communicate and interact with their
> world, even though they are blind/deaf. Don't autistic individuals
> deserve the same chance to learn how to communicate and interect with their
> world? You seem to suggest they don't and that they should just be left
> without any tools/skills and in a world of their own. I don't see how that
> will benefit anyone.
Go read
http://griffs-grumbles.blogspot.com/2007/01/fundamental-disconnect.html
and gain understanding as to why it is not a binary, black-and-white
setup such as you are claiming it is.
Griff
Griff
Ah. I hadn't been around in a while - thanks for letting me know that I
need to add to my killfile. *adds the idiot to the killfile*
Griff
John Jones
Did I frighten the little girl with the nasty question?
John Jones
That's it Griff, run boy, avoid the question.
Jeremy
> I am not totally against either of those although traditional ABA yes I am
> against. I think behavioural interventions do get results and not just for
> people with autism but for almost anything but nothing jusitifes putting a
> child through the equivalent of a work week to do it.
I agree, 110%. Also, nothing justifies aversives, punishments, etc.,
in ABA (et al) type situations.
Jeremy
Arak
I am utterly against it, since autism is not a behavioural disorder.
"Dog training", as I refer to ABA as because that is just what it is
really (behaviour modifcation), may help your child "act normal" for
the time being, but in the long run, it is not helping your child with
the other problems he/she may be having.
It does not address any underlying causes for the bahviour, it does
not help a child in the adult world, and it does not help a child cope
or accept his neurological differences.
Plus, it does not do any good for a child's self esteem.
I agree with Griff: Get rid of it as a therapy. It's a teaching tool,
nothing more.
I went through it myself as a child and it did nothing for the
problems that were underlying, I grew up wanting to kill myself
because "pretending to be normal" really is hard and wears one down
after awhile, it did not prepare me for adulthood and it certainly did
nothing to help the digestive problems and thyroid problems I've had
my whole life. It took me almost dying at the age of 24 before I
finally got treated for these things.
At the age of 26, I almost ended my life. My suicide note said "I
cannot pretend anymore".
Is this what people want for their children's future??
Yeah...I'm against ABA and other behavioural intervention. A reaction
to stress is not a behaviour problem, it's a sign that something else
is wrong and ABA does nothing to address what is really wrong.
Just my opinion, of course.
grr
Arak /|\
Arak
>
> > When your behavior-modified kids come back to you as adults and tell you
> > how your behavior modification made them tense, afraid, and unable to cope.
>
> I strongly believe that won't happen because I don't think that's what they
> are feeling and it doesn't make them that way.
Hmmm. I was considered high functioning. I've grown up to be quite
successful: married, homeowner, career, etc. However, I'll be the
first one to tell you, now that I am almost 32, that behaviour
modification made me feel tense, afraid and unable to cope. It would
be at the age of 24 that I would teach myself relaxation skills, how
to respect my limits, etc.
I underwent what is called traditional ABA, in an institutional
setting, back in 1978.
I may not be your child, but I am an adult who went through it as a
child and I can tell you it didn't amount to a hill of beans when it
came to my well being.
>
> Also, the work that I am doing is helping the kids cope better and its easy
> to recognize see when you see it first hand.
Really? Then you must be doing something different. It looked like I
had progressed astronomically as well when was 3, but it all came back
and bit me on the ass when was 23. One can only pretend to be normal
for so long.
>
> yes, do you have any proof its not. If so, please provide it as it would be
> of interest to me.-
See my last post. It did me no good. I'm only one person, of course,
but I've got ample proof from my own experience on how much it did not
benefit me.
ABA therapists thought I was afraid of certain objects and ignored the
fact that astygmatism in both eyes caused my depth perception to bve
totally off. They sat me down and threw balls at me because they
thought the fact that my depth perception was off was because of my
"behaviour problem". Glasses fixed the problem in the end and I am
still afraid of people throwing anything near me 30 years later!
ABA/IBI did *not* medically treat the GERD and bowel problems I've had
my whole life. They did *not* prevent those problems from almost
killing me at the age of 23. (My esophagus was nearly burned out
completely, and I could not eat or drink anything for three months
because of it) They thought I was picky about food because if my
"behaviour problem"...no thought was given that I might actually have
a digestive disorder!
ABA/IBI did *not* help me find a diet that would work with my ever
changing dietary needs due to above stated digestive problems, which I
still struggle with to this day.
ABA/IBI did *not* treat the astygmatism I have in both eyes, causing
me to have poor depth perception and thus be afraid of certain things
because they appeared to be too close or something
ABA/IBI did *not* treat the thyroid problems I am having and have been
having since I was a child.
ABA/IBI did *not* give me the coping tools I needed to help me deal
with my very different way of perceiving stimulus, thus forcing me to
grow up in an environment that was not only harmful to me, but
frightening as well.
ABA/IBI did *not* help me learn to relax, create coping strategies
that are not only effective for me, but appropriate to others around
me (i.e.: social niceties).
ABA/IBI did *not* operate on the principle (nor does it still) that
when I am not stressed out, I learn things such as social skills much
easier. I've learned more in Toastmasters as an adult than I ever did
in ABA!
ABA/IBI did *not* teach me the skills I needed to live independently
as an adult: budgeting, dealing with stress, job interviews, training
for my career, dealing with other people such as romanitic
relationships, working relationships or business relationships.
ABA/IBI did *not* provide me with the self confidence I needed to
overcome my difficulties. It only told me that I was defective, my
problems meant nothing and that I just had to "act normal". It did not
empower me.
ABA/IBI did *not* make feel like I was worth being a member of
society. It also gave me the message that the people in this world are
mean-spirited, not compassionate and interested in me only if I
conformed. It did not make me feel like I wanted to be a contributing
member of such a hateful world.
I got empowerment and the tools I needed from places and people such
as:
* Alternative High School who had the right focus: empowering us to
take charge of our own lives and situations
* Toastmasters where people learn social, leadership and communication
skills in apositive environment
* Doctors who actually took the effort to look at my physical problems
and treat them so I could start feeling better. (I never told any of
them that I am autistic - amazing how that little omission of
information got me the care I really needed!)
* The many people in my life who actually took the time to get to know
me, took the time to mentor me and took the time to help me discover
the great things I have to offer as well as the strength to handle my
differences and still be productive.
ABA/IBI did *not* do any of that for me and I believe that it is a
terrible waste of money both now and in the future to encourage this
as the only treatment! It is an educational tool, not a medical
treatment.
Being treated like a defective behaviour problem is a horrible way for
any child to grow up.
Yes, I'm a little passionate about this subject, but I do have a right
to my opinion, and people have the right to disagree with it or not
read my posts too.
Arak /|\
Arak
>
> My proof:http://users.1st.net/cibra/index.htm
>
> That's one proof. When you've read the entire site, let me know.
That is an excellent site and some parents have written some detailed
accounts.
Thanks for providing it!
Arak /|\
toto
wrote:
I agree. Also, I am totally against the aversives used in the reports
on the website just given. My grandson has never had any restraints
applied and we would not allow this. He has been told *no* on
occasion, but that's something that all parents do with children
whether NT or autistic when their behavior is unacceptable to those
around them. He is not told *no* very much as we believe in positive
parenting and don't generally punish either dgs or his sister.
>Gareeth
>
--
Dorothy
There is no sound, no cry in all the world
that can be heard unless someone listens ..
The Outer Limits
toto
You know, I don't think autistic children are different from NT
children in how they should be treated. My parenting philosophy is
that the best way to teach is to model good behavior rather than to
try to get a child to do things when you are doing the opposite.
There are a few things that might change for autistic children in this
post, but not that many.
Positive Parenting Methods
First and foremost, model the behavior you want your child to emulate.
Children learn what they live. Teach by example, not words.
Second, assume your child is good even when he misbehaves. Understand
that his actions have an underlying developmental reason.
Third, state your rules and requests in positive ways, not negative
ones. Redirect her to things she can do rather than trying to keep
her away from things without alternatives. Keep "nos" to a minimum.
Fourth, explain. Make sure you have his attention. You may need to
go closer to him, to touch his shoulder.
Fifth, always try to look for the underlying cause of the behavior and
address that so that the need is actually met in acceptable ways. Give
her choices between many things that are acceptable to you
Sixth, give him warnings of transitions so that they become easier to
manage. Children, like adults, need to complete activities they are
absorbed in. A timer helps with this.
Seventh, allow for time-outs when your emotions or hers are out of
control. Time-outs can be used non-punitively to allow both the adult
and child to regain control of their emotions. Teach her to count
to 10, to breathe, to walk away by modelling the techniques you use to
manage your anger.
Eighth, say what you mean and mean what you say. Don't give a lot of
warnings, give one and then act. Give him time to comply, but follow
through.
Ninth, plan for situations before they arise. Try to stay calm
yourself. Allow her to vent her feelings and accept them.
Tenth, as your child grows, involve him in making the rules and
choosing the consequences for breaking them Brainstorm and problem
solve with him.
Eleventh, make amends when you make a mistake. Apologize to your child
when you have made a mistake. Accept his apologies gracefully as
well.
Twelfth, give your child responsibility for real tasks that help make
your family work, keeping the chores within her developmental stage
and allowing her input into what the chores should be and when
to do them.
>Jeremy
Arak
>
> You know, I don't think autistic children are different from NT
> children in how they should be treated. My parenting philosophy is
> that the best way to teach is to model good behavior rather than to
> try to get a child to do things when you are doing the opposite.
> There are a few things that might change for autistic children in this
> post, but not that many.
My parents used that philosophy as well: raise me like any other kid.
More explaining had to be done for certain things, but simple
parenting worked wonders for me.
Thank you for providing the positive parenting methods. I agree with
you on those.
Arak /|\
Gareeth
>
>> You know, I don't think autistic children are different from NT
> children in how they should be treated.
Taking a behavioural approach though works for everyone. Everyone does it to
themself to some degree. Adults do it for themself. We give ourself
something after an unpleasant task. With children we reward the behaviours
we want to see increased so whether we think of it or not that way people do
behavioural interventions with all their kids constantly.
I used to hate behavioural psychology. I was quite obnoxious about it in my
lower level behavioural classes. Over time between seeing that it already
really was everywhere and that it actually did deliver results when much of
psychology doesn't I had to change my mind.
Gareeth
Early Spring
"Arak" <Arak.T...@gmail.com> wrote in message
news:1176475150.5...@o5g2000hsb.googlegroups.com...
The site has a lot of good things to say but it's horribly illegible.
Early Spring
Fabulous post, Arak. Thank you for taking the time to post.
I've never used treats or rewards for my son. As a consequence he does
things because he wants to. Also, he has empathy for others maybe because
I've always shown empathy for his feeling and not use ABA. There are some
situations we've had to struggle with like he wouldn't get his hair cut for
years. It was gorgeous, curly and golden. Everyone thought he was a girl
but he didn't mind, he was 2.5-4.5 years old during his long hair phase.
The only thing was it was total hell to brush because it was curly, every
morning it would be in mats and he wanted it brushed because he liked to run
his hands throw it but it hurt him so badly. It was torture for all of us.
I told him that if his hair was shorter it wouldn't be so hard to look after
but didn't force him to get his hair cut or offer him something really
fabulous in exchange for him getting his hair cut. I did none of this
because there is no value in forcing a child to do anything nor is there
value in bribery/trickery. So, one day he decided to get his hair cut, out
of the blue and he's had his hair short ever since he's now 6. He came to
the decision himself and there is value in that above all. He is autistic
and that is no reason not to respect his personal wants and needs. That
last statement seems obvious but not when I see or hear of the terror some
ABA/IBI programs cause.
MauiJNP
> Hmmm. I was considered high functioning. I've grown up to be quite
> successful: married, homeowner, career, etc. However, I'll be the
> first one to tell you, now that I am almost 32, that behaviour
> modification made me feel tense, afraid and unable to cope. It would
> be at the age of 24 that I would teach myself relaxation skills, how
> to respect my limits, etc.
>
I work with young kids (age 4-6) and one of the first things we teach them
is to ask for a break (in any way they are able). We also pay close
attention to signs they need a break and don't push them. But, like I said,
I am not an ABA person, I do behavioral interventions not ABA.
One of the other firsts we do with them is relaxation techniques and calming
down.
As for the rest of your post, I didn't read it but will comment when I do,
as I intend to read it later.
Jeremy
> Really? Then you must be doing something different. It looked like I
> had progressed astronomically as well when was 3, but it all came back
> and bit me on the ass when was 23. One can only pretend to be normal
> for so long.
Exactly. That was a point I was trying to make in another thread
somewhere else. The Normal Dance costs and hurts. It may look like a
wonderful step forward for someone's 10yo to start making eye-contact
and playing nicely with the other children but ABA can breed fake
results - trained eye-contact not comfortable eye-contact. Learned
play "methodologies" not natural interaction. And that's the Normal
Dance and it's not sustainable. The more pressure to perform that is
piled on, the more likely and spectacular the fall will be. I did it
at 22, quite publicly, on ASA fwiw.
> > yes, do you have any proof its not. If so, please provide it as it would be
> > of interest to me.-
>
> See my last post. It did me no good. I'm only one person, of course,
> but I've got ample proof from my own experience on how much it did not
> benefit me.
And Arak's story is one amongst many. ASA is fully searchable on
Google right back to the very first post <http://groups.google.com/
group/alt.support.autism/> and it's littered with stories of people
who collapse under the weight of expectation to conform to NT
practices.
> Being treated like a defective behaviour problem is a horrible way for
> any child to grow up.
And therein lies the fundamental failure - it treats the children as
simplistic beings with simplistic defects to be simplistically
fixed.
The fact is that every single autistic child is smart. Maybe not in
terms of maths and chess and science but I have yet to meet or hear of
an autistic kid who's every 'inappropriate' or 'undesirable' action is
not arrived at through a sometimes complex set of often highly logical
decisions. ABA doesn't look deeply enough for the *root* causes of a
behaviour. The questions must not start with 'How do we stop (x)' but
with 'Why does he do (x)?' followed immediately by 'Why might that
trigger be upsetting/uncomfortable/painful/etc?'
> Yes, I'm a little passionate about this subject, but I do have a right
> to my opinion, and people have the right to disagree with it or not
> read my posts too.
I think as people who have been on the receiving end of programmes and
systems that were supposedly "for the best" (note the quote marks on
that one), we have the greatest right of any group to have our
feelings heard.
Jeremy
Jeremy
> I am not an ABA person, I do behavioral interventions not ABA.
TomAto, tomaRto... (phonetic spelling)
Jeremy
Griff
>> Hmmm. I was considered high functioning. I've grown up to be quite
>> successful: married, homeowner, career, etc. However, I'll be the
>> first one to tell you, now that I am almost 32, that behaviour
>> modification made me feel tense, afraid and unable to cope. It would
>> be at the age of 24 that I would teach myself relaxation skills, how
>> to respect my limits, etc.
>>
>
> I work with young kids (age 4-6) and one of the first things we teach them
> is to ask for a break (in any way they are able). We also pay close
> attention to signs they need a break and don't push them. But, like I said,
> I am not an ABA person, I do behavioral interventions not ABA.
ABA = behavioral intervention. There is NO DIFFERENCE BETWEEN THEM.
Griff
Gareeth
> > ABA = behavioral intervention. There is NO DIFFERENCE BETWEEN THEM.
Don't shout when you are saying things that are not even true. ABA is a
specific brand of behavioural therapy. Anything you do to alter behviour
could be called a behavioural intervention. When I gave myself money for
every 20 minute interval of studying and subtracted money for skipping class
that was a behvioural intervention.
Gareeth
MauiJNP
>
> TomAto, tomaRto... (phonetic spelling)
>
You are wrong.
ABA is a specifically trained and ultra intensive from of interventions. I
am not an ABA trained person and I don't do ABA trained interventions.
MauiJNP
> ABA = behavioral intervention. There is NO DIFFERENCE BETWEEN THEM.
>
yes there is, you must be specially trained to do ABA
Griff
>> ABA = behavioral intervention. There is NO DIFFERENCE BETWEEN THEM.
>>
>
>
> yes there is, you must be specially trained to do ABA
>
>
They're still behaviorist and they're still abusive.
Show me how they're not abusive.
Griff
Terry Jones
>> What do you think happed to the older, often undiagnosed autistics?
>
>I have a 32 year old relative who is exactly that, an adult undiagnosis
>autistic individual so I know exactly where they can end up. And its not
>what I would want for my children or the one's I work with.
The rest of the paragraph [which you snipped] read "It
wasn't ABA, but it was certainly an attempt to modify our behaviours
based on positive and negative reinforcements."
IOW I was asking *specifically* about the effects of "traditional"
attempts to modify their / our autistic (even though unrecognised)
behaviours, by means of behavioural approaches "reward and
punishment", "praise and disapproval" - A question which you have not
answered.
I am not asking what you *want* or wish for, I am asking you to look
at the consequences of what was actually *done* to many (quite
possibly to your relative too?).
>> It's commonly based on "outsider's" priorities, not the priorities of
>> the individuals it claims to "help".
>
>is a parent an outsider?
To the extent that they are not autistic, yes. There's a fair amount
of the "conventional wisdom" and instincts which doesn't apply at all
well to autistics.
[Of course not all autistics are alike - that's where a multiplicity
of experiences & insights, as you find in groups like this, is
valuable, even to "insiders"]
>> And overused / inappropriately used, for instance to "address"
>> behaviours which result from other causes (e.g. sensory issues).
>
>what exactly are you saying here? what is an inappropriate way to address
>these issues? what is appropriate?
What is appropriate is identifying and addressing the causes of the
behaviours, not dogmatically assuming that the behaviours themselves
*must* be *the* problem.
So for example instead of "training out" stims (and ignoring the
functional needs which they were meeting), appropriate is to (a)
reduce unnecessary stressors; and (b) to find equally effective but
less obtrusive / less problematic stims.
>> It totally fails to address question of the "cost" to the person
>> trained in this way - That is children are taught *to do*, but they
>> are not taught *how* to do in a manner which is "affordable" /
>> sustainable given their different neurology.
>
>why exactly would you say that? what are you getting at here
Unless you are misreading this metaphor as meaning *monetary* cost,
then I say it because I believe it to be true. And I believe it to be
true based on personal experience, the experience of others in the
group, and based on the fMRI evidence.
It's quite simple - the fMRI shows that autistics are using the less
efficient "general purpose" regions of the brain when performing tasks
for which NTs are able to employ "special purpose" structures.
This is highly consistent with our own experiences that trying to
emulate many NT functions is both slower and quite "draining".
So because of structural differences in the brain, it's not reasonable
to expect us to do as well as NTs *if* we're only being taught to try
and do these tasks in the same way as NTs are able to do them.
>> This appears to be an intrinsic problem with "black box" behavioural
>> approaches, since it is an area which the technique is basically not
>> designed to consider.
>
>huh?
I think another poster has replied to this question - If that isn't
enough then I suggest you read up on the background & origins of
behaviourism.
>> You wouldn't use a behavioural approach to try and make a
>> (neurologically) blind person see, or to make a (neurologically) deaf
>> person hear - so why use it with autism? So what is the *technical*
>> basis for believing that it is appropriate for people with
>> neurological differences?
>
>Blind and deaf people are taught to communicate and interact with their
>world, even though they are blind/deaf. Don't autistic individuals
>deserve the same chance to learn how to communicate and interect with their
>world?
Again you seem to be talking about emotional / moral issues like
"ought", rather than practical issues like *how*?
> You seem to suggest they don't and that they should just be left
>without any tools/skills and in a world of their own.
I'm not suggesting that *at all* - what I'm asking is that the tools
and skills they're taught are *viable* for them as *autistics*. Deaf
people may be taught sign and lip-reading, the blind taught Braille.
Where are the autistic equivalents of these? - Yes, I know there are
things like PECS - but for many areas affected by autism there isn't
anything on offer except for trying to imitate the way NTs do things.
--
Terry
Terry Jones
>I work with young kids (age 4-6) and one of the first things we teach them
>is to ask for a break (in any way they are able). We also pay close
>attention to signs they need a break and don't push them.
Two problems here - Firstly autistic "body language" is non-standard.
It's a reasonably common experience for people to think we're angry or
distressed, when we're just concentrating, or are even "in neutral",
yet to completely miss when we genuinely *are* becoming angry or
frustrated.
Secondly "sensory issues" includes *self* monitoring, including basics
like need for food or water, the ability to locate or identify the
source of pain, etc. - One reason why "burn out" is of such concern is
exactly that we're often not *aware* of exceeding our limits.
>But, like I said,
>I am not an ABA person, I do behavioral interventions not ABA.
And that's exactly the problem - trying to change behaviours without
providing the appropriately adapted "tools" to perform the function or
meet the need.
The way people *teach* may be adapted, but often *what* they're
teaching doesn't appear to be.
--
Terry
mrde...@yahoo.com
compared to Joseph Goebells in this group? come on aren't we being
extreme? Is autism speaks showing a bunch of rats running out a
building like Goebells did? Some of you regulars here need to try and
understand the difficulties and hardships that parents endure raising
a child with autism. Go ahead flame away if you wish, really this post
is sickening so I had to speak up.
On Apr 9, 3:39 am, "The Autist formerly known as" <o...@ym.andius>
wrote:
> A group of people who seem to have lernt there publicity tactics from Joseph
> Goebells,
>
> It's called the big lie technique.
>
> --
> þT
>
> L'autisme c'est moi
>
> "Space folds, and folded space bends, and bent folded space contracts and
> expands unevenly in every way unconcievable except to someone who does not
> believe in the laws of mathematics"
>
> "Caitriona Mac Fhiodhbhuidhe" <st_brigids_gate_f...@yahoo.com> wrote in
> messagenews:1176089368....@q75g2000hsh.googlegroups.com...
>
>
>
> > On Apr 8, 9:36 pm, "jjcddg" <jjc...@yahoo.com> wrote:
>
> > Uhm.... I'm trying to remember. Is Autism Speaks a curbie group, or a
> > non-curbie group?
>
> > Kitten- Hide quoted text -
>
> - Show quoted text -
Gareeth
> Not trolling here, but why am I not suprised to see Autism Speaks
> compared to Joseph Goebells in this group? come on aren't we being
> extreme? Is autism speaks showing a bunch of rats running out a
> building like Goebells did? Some of you regulars here need to try and
> understand the difficulties and hardships that parents endure raising
> a child with autism.
I agree that although there have been similarites with the propaganda it is
wrong to compare it to Goebells. I don't agree with that sort of cheapening
of history.
I do understand the sort of difficulites raising a child with autism
entails. That still doesn't mean Autism Speaks speaks for me.
Gareeth
mrde...@yahoo.com
an organization that is proactively trying to help compared to a sick
nazi fuck. There is no propaganda with autism speaks. I know many of
you are against the word cure, but I have heard of some autistics
openly talk about their childhood being a blur of stimming and they
are glad that they no longer have that symptom. So my point is that
some people with autism actually DO want to be "cured" (I know you
hate that word sorry) while others I know don't. So please lighten up
on Autism Speaks.
On Apr 14, 1:39 am, "Gareeth" <gareethn...@hotmail.com> wrote:
Terry Jones
>There is no propaganda with autism speaks.
Of course there is - they are trying to "sell" a particular message,
just like many other organisations and political groups. What is in
question is the *accuracy* and "spin" of their message.
Historically most autism societies were set up by parents, and are
still dominated by the parental and "professional" mindsets. It wasn't
until internet access became common that autistics themselves were
able to "get together" to any significant extent.
Unfortunately most of us being weak in social / political skills,
these organisations remain dominated by the concerns and priorities of
the Ps & Ps, not those of autistics themselves.
Simple question - what percentage of Autism Speaks are [adult i.e.
joined of their own accord] autistics? And what percentage of their
decision making bodies are autistic?
So how can they possibly claim to "speak" *for* Autism & Autistics?
>I know many of you are against the word cure,
In the current and reasonably foreseeable "state of the art", this is
a deception - to "cure" an autistic would require a major "rewiring"
of their brain.
At the moment what are being promoted as "cures" seem to fall into
three categories;
Pure "snake oil" (like chelation), which is at *best* a waste of time
and resources, and at worst can be fatal.
Grossly "oversold" interventions like the GFCF diet - Which only has
any benefit to those who actually *have* a problem with gluten and /
or casein - And which don't affect *autism* in any way, but whose
effective treatment frees up more resources / energy for "acting
normal".
Then there's the various types of "how to act like an NT" training
(for instance ABA).
Yet how many of these take into account that with a differently
structured brain, trying to do things in the same way as an NT is
often slow, demanding on resources, and unsustainable? How many of
these provide adapted, "autistic friendly" ways of doing things?
[I don't mean in how they're taught, but the way the behaviour / skill
is expected to be performed.]
> but I have heard of some autistics
>openly talk about their childhood being a blur of stimming and they
>are glad that they no longer have that symptom.
But *how* were they "cured"? - I don't think that most people here
would have any problem with controlling the "inputs" and demands which
lead to stimming, or providing less obtrusive or less risky (but
equally effective) *substitutes*.
The issue people have is with *just* "training out" stims, without
doing anything to address the problems to which these behaviours were
a response.
[For instance, if you read back through the archive, you'll find that
we regularly suggest trying to establish effective communication
(where this is lacking) as an important component in addressing
problem / risky behaviours.]
>So my point is that
>some people with autism actually DO want to be "cured" (I know you
>hate that word sorry) while others I know don't.
It's not a question of "hating" the word - it's the actions (and
inactions) which often seem to go with it (see above).
Most people here don't have any problem with *appropriate* help. What
they do take objection to is "help" which doesn't reflect their
priorities or needs, tries to "treat" autism by ignoring the
underlying fact that we are autistic, overworks and even endangers
autistics (especially children).
"The road to hell is paved with [other peoples'] good intentions".
Why is it so "unreasonable" to expect people to "look [or in this case
*listen*] before they leap [on us]"?
>So please lighten up on Autism Speaks.
"lighten up" - It's a common mistake to see our responses and beliefs
as being predominantly emotionally based - even though one of the
traits the professionals identify is "concrete thinking" - I.e. based
on *functional* consequences, "actions speak louder than words", etc..
So please explain in functional rather than emotional terms, exactly
*why* you would expect us to "lighten up" until organisations like
"Autism Speaks" actually start to *listen* and act on the concerns and
priorities of those they claim to speak for?
--
Terry
mrde...@yahoo.com
Thank you for your thoughtful comments, see mine below.
> >There is no propaganda with autism speaks.
>
> Of course there is - they are trying to "sell" a particular message,
> just like many other organisations and political groups. What is in
> question is the *accuracy* and "spin" of their message.
They are trying to raise awareness and get research funded.
>
> Historically most autism societies were set up by parents, and are
> still dominated by the parental and "professional" mindsets. It wasn't
> until internet access became common that autistics themselves were
> able to "get together" to any significant extent.
This is true, maybe you need to get more websites out to the public.
Maybe you need to contact autism speaks and request a section for "our
view" on their website. Maybe you need to contact Harpo and get on her
show. I certainly have learned a lot from you all reading the group,
and I've made some therapy decisions based on your view points since
my son can't yet say: "I hate this, I like this", "I don't need this,
I do need this".
>
> Unfortunately most of us being weak in social / political skills,
> these organisations remain dominated by the concerns and priorities of
> the Ps & Ps, not those of autistics themselves.
>
> Simple question - what percentage of Autism Speaks are [adult i.e.
> joined of their own accord] autistics? And what percentage of their
> decision making bodies are autistic?
>
> So how can they possibly claim to "speak" *for* Autism & Autistics?
They cannot, face it, they are speaking for babies, toddlers and
school kids. Not adults.
> >I know many of you are against the word cure,
>
> In the current and reasonably foreseeable "state of the art", this is
> a deception - to "cure" an autistic would require a major "rewiring"
> of their brain.
>
> At the moment what are being promoted as "cures" seem to fall into
> three categories;
>
> Pure "snake oil" (like chelation), which is at *best* a waste of time
> and resources, and at worst can be fatal.
>
> Grossly "oversold" interventions like the GFCF diet - Which only has
> any benefit to those who actually *have* a problem with gluten and /
> or casein - And which don't affect *autism* in any way, but whose
> effective treatment frees up more resources / energy for "acting
> normal".
>
> Then there's the various types of "how to act like an NT" training
> (for instance ABA).
>
> Yet how many of these take into account that with a differently
> structured brain, trying to do things in the same way as an NT is
> often slow, demanding on resources, and unsustainable? How many of
> these provide adapted, "autistic friendly" ways of doing things?
>
> [I don't mean in how they're taught, but the way the behaviour / skill
> is expected to be performed.]
Probably none...
Like I stated above you're points are all valid and I respect them and
hope that something can get done to get you're views out more. Terry I
am glad to finally talk with someone here that does not respond with
sarcasm and anger. I think you could be the person to raise more
awareness of the adult with autism perspective. Parents like me are
just glad to see something bigger is happening attention wise and
research wise.
Regards
HGJ
HGJ
> On 13 Apr, 23:01, "Jeremy" <jre...@gmail.com> wrote:
>
> > On Apr 13, 4:29 pm, "MauiJNP" <jmh1...@ptd.net> wrote:
>
> > > I am not an ABA person, I do behavioral interventions not ABA.
>
> > TomAto, tomaRto... (phonetic spelling)
>
> In ASCII IPA:
>
> /t@'mA:t@U/
> /t@'meItoU/
I put those in the wrong order. Jeremy's "TomAto" corresponds to /
t@'meItoU/, and "tomaRto" corresponds to /t@'mA:t@U/.
Terry Jones
>> Simple question - what percentage of Autism Speaks are [adult i.e.
>> joined of their own accord] autistics? And what percentage of their
>> decision making bodies are autistic?
>>
>> So how can they possibly claim to "speak" *for* Autism & Autistics?
>
>They cannot, face it, they are speaking for babies, toddlers and
>school kids. Not adults.
Not strictly true - they are speaking for what they *believe* and
*assume* about younger autistics. Yet somehow they manage to convince
themselves that they can do this while ignoring the experiences of
those who've "been there, done that", those who *were* those infants
and children.
I suspect that this is in part a holdover from the old "mental health"
models, where (in practice) it's just assumed that the "patient" can't
*possibly* have useful insights into their own condition.
Based on a mixture of desperation (on the part of parents), and
complacency and arrogance (on the part of too many "professionals").
Plus demarcation / "not invented here" syndrome - so that (for
example) fMRI work is not used to inform "front line" understanding
and practice.
(This also happens with psychology in general, where therapeutic
practice often appears to be a generation or two behind current
insights.)
>I think you could be the person to raise more
>awareness of the adult with autism perspective.
Unfortunately (like many of us) I lack the social / political skills
(and the stamina) to do this effectively - Plus, as experience has
shown us, there can be considerable resistance when we try to set foot
on "turf" which others have claimed as their own.
>Parents like me are
>just glad to see something bigger is happening attention wise and
>research wise.
Unfortunately "any publicity is good publicity" doesn't hold true
here. For example films like "Rainman" may have done more harm than
good - Yes they can raise "awareness", but much of that awareness is
simply *wrong*, or not applicable to most autistics.
At the "professional" level, there's a "celebrity autistic" named
Temple Grandin - And while she was one of the first to stand out from
the crowd, this also lead to many making the assumption that *all*
autistics (at least the higher functioning ones) possessed the same
visual thinking and videotape memory as she did.
An analogy I sometimes use is with (the UK) Parliament. Many MPs work
very hard to address their constituents' problems at the individual or
group level.
*But* quite a lot of these problems arise from the way that laws were
written in the first place (the "law of unintended consequences" /
"well we *meant" well" thinking) - and from the actions and inactions
of government and government authorised agencies.
IOW they may be working *hard*, but they're not working *smart*. This
sort of approach helps hundreds while harming (or neglecting) tens of
thousands. ("Prevention is better than cure", " a stitch in time saves
nine", etc.).
[Personally I suspect that it's more emotionally rewarding for a
"people person" to help someone in need, than it is to do the "boring"
detail work which would help to prevent that person (and many others)
from needing help in the first place.]
--
Terry
toto
wrote:
>How many of
>these provide adapted, "autistic friendly" ways of doing things?
I would be interested in what kinds of *autistic friendly* ways of
doing things might be taught, Terry. I love your perspective on these
things.
For example, let's take potty training for a 3, 4 or 5 year old (my
impression is that autistic children train later than most NTs, so
waiting certainly would be part of that). How would you make teaching
the task more *autistic friendly?*
What about self-feeding with a spoon or fork or drinking from a
regular cup?
These are things we are working on with my dgs. We will not be potty
training for a while since we are moving and don't want to add any
more stress to that, but certainly by 3 most kids are eating with a
spoon and fork. He doesn't do that.
Griff
> On Sat, 14 Apr 2007 10:33:56 +0100, Terry Jones <terry...@beeb.net>
> wrote:
>
>> How many of
>> these provide adapted, "autistic friendly" ways of doing things?
>
> I would be interested in what kinds of *autistic friendly* ways of
> doing things might be taught, Terry. I love your perspective on these
> things.
>
> For example, let's take potty training for a 3, 4 or 5 year old (my
> impression is that autistic children train later than most NTs, so
> waiting certainly would be part of that). How would you make teaching
> the task more *autistic friendly?*
Speaking from my own experiences, potty training is dicey at best for
autistics, often because we aren't aware enough of our bodies to notice
or understand the signals that say "it's time to go." I'm in my 30s and
I'm still really not aware of when I need to go until, suddenly, WHOOPS!
- I have to drop whatever I'm doing and RUN for the bathroom. So I think
the autistic-friendly way of doing it might be to understand going in
that you're not working with a typical neurology and that it's probably
not willful resistance on the part of the child.
> What about self-feeding with a spoon or fork or drinking from a
> regular cup?
>
> These are things we are working on with my dgs. We will not be potty
> training for a while since we are moving and don't want to add any
> more stress to that, but certainly by 3 most kids are eating with a
> spoon and fork. He doesn't do that.
I think this has more to do with fine motor skills than anything, in
terms of handling the spoon or fork, and with motor control of the mouth
- and, now that I think about it, general body awareness as well. It's
easier to aim food into your mouth if you don't need to also figure out
where the end of the spoon (never mind the tines of the fork!) is in
relation to your teeth, tongue, and lips.
Helping with overall body awareness is probably key to both issues
you're asking about in this post. The foundation for the expected
behaviors may not be there yet - it's like asking someone to write with
a pencil when he still hasn't got the hang of grasping and manipulating
an object with his fingers yet. The game of "where's your nose?" is one
that I loved when I was a kid, and it unconsciously taught me body
awareness along with it... but like I say, it's still probably not as
good as NT body awareness is, and at this point I think I can safely say
it never will be.
Griff
Early Spring
"toto" <scar...@wicked.witch> wrote in message
news:jqv123t3u2p05580m...@4ax.com...
> On Sat, 14 Apr 2007 10:33:56 +0100, Terry Jones <terry...@beeb.net>
> wrote:
>
>>How many of
>>these provide adapted, "autistic friendly" ways of doing things?
>
> I would be interested in what kinds of *autistic friendly* ways of
> doing things might be taught, Terry. I love your perspective on these
> things.
>
> For example, let's take potty training for a 3, 4 or 5 year old (my
> impression is that autistic children train later than most NTs, so
> waiting certainly would be part of that). How would you make teaching
> the task more *autistic friendly?*
>
> What about self-feeding with a spoon or fork or drinking from a
> regular cup?
>
> These are things we are working on with my dgs. We will not be potty
> training for a while since we are moving and don't want to add any
> more stress to that, but certainly by 3 most kids are eating with a
> spoon and fork. He doesn't do that.
Not Terry here, obviously, but I want to add my verbal and 'high
functioning' son at three was still mainly only consuming breast milk, some
solids but not much, at 3. He would use utensils but I would have rather,
at 3 and 4, my son was eating 100% solids and wouldn't have cared if he used
his fingers or toes. Your grandson is eating just let him use his fingers
until he's ready, he's probably doing what works best for him. It could be
possible he will develop the skill with time. An OT would do all sorts of
fine motor exercises with him to build the skill more quickly but that might
also really stress him out. Is it really that important?
My son was also not potty trained until he was over 4, well #2 anyway. He
was peeing in the toilet before he was 2 years old and didn't need a diaper
at night. He refused a diaper one night when he was almost two, fought and
cried so I put a dozen towels under him to sleep. He peed was mortified, he
screamed. I'm assuming it was the wetness which he's never experienced with
diapers and he hated the sensation. He's never peed the bed since nor
needed a diaper during the day for urinating in.
He would tell us when he needed to poop and request a diaper, he would do
his business and not need another diaper until the next poop. We always
asked him he would like to use the toilet instead of the diaper, one day he
said 'sure' and the rest is history. It sounds in retrospect quite easy but
in reality I was pretty darn tired of cleaning his butt and frustrated with
diapers/pull ups and at the end it was a huge relief to have him use the
toilet instead. I'm sure it will come for your dgs. It does need to be
encouraged and modelled for him though, I know with my son he wouldn't just
decide to the use the toilet, we needed to make it an option every time he
wanted diaper. We would just say something like, 'Would you like to try the
toilet today?'. Or even, "I want you to use the toilet today!" which he
didn't do for years but at least he knew where I stood on the issue. :)
MauiJNP
It would be pointless to try and convince you otherwise so I won't. I
disagree with you and I really don't care. I think you are wrong but you
are entitled to your own opinions, as I am too. You think it is abusive to
provide therapy to autistic individuals and I think it is neglectful/abusive
not to. End of story.
Griff
were dogs, ignoring their ability to think and reason, which is what
behaviorism does - regardless of what acronym-of-the-month is attached
to it. You think that dog training is perfectly okay to apply to people.
That's reprehensible.
Therapy is a totally different thing. Dog training is not therapy; don't
try to frame it as if it is.
Griff
Early Spring
"MauiJNP" <jmh...@ptd.net> wrote in message
news:WoCdnTRX0uNaiLzb...@ptd.net...
My son currently is not in therapy of any kind, has only had therapy for 6
weeks at the beginning of this year, gross and fine motor OT and he is six.
I take huge offense with your assertion that as a parent of an autistic
child not in therapy I am abusive/neglectful. I see why you would say that
though, it is your bread and butter after all. A lot of bread and butter in
fact, it's very expensive to provide therapy. In this area it starts at $30
an hour. You see, as far as I'm concerned, anyone who is not autistic and
is making their living because of autism, really can't speak without bias
about autism.
Early Spring
"Griff" <gryph...@netzero.net> wrote in message
news:58cjpfF...@mid.individual.net...
I agree, Griff. It is just like dog training. I even tell other parents of
autistic parents as much. I'm not too popular in the support group here
because of it but oh well. After 30+ years I'm used to not being popular.
:)
Gareeth
> Of course no organization can speak for you nor me. I just hate to see
> an organization that is proactively trying to help compared to a sick
> nazi fuck. There is no propaganda with autism speaks. I know many of
> you are against the word cure, but I have heard of some autistics
> openly talk about their childhood being a blur of stimming and they
> are glad that they no longer have that symptom. So my point is that
> some people with autism actually DO want to be "cured" (I know you
> hate that word sorry) while others I know don't. So please lighten up
> on Autism Speaks.
>
the things that is probabaly the most misunderstood and a focal point of why
autistic people distrust behavioural interventions. Any autistic person who
can express it will tell you that stimming is a coping mechnaism for them.
It does something useful. It is nevertheless mindlessly targetted for
elimination because it looks autistic without anyone really evaluating it's
purpose or replacing it with something equally useful.
I am actually one of the autistic people around here who is somewhat pro
treatement but the sort of thing you just mentioned is a great example of
what happens when people decide to Speak for autism without ever having
listened. I won't be lightening up about them until there is proof they are
listening.
Gareeth
Terry Jones
>I would be interested in what kinds of *autistic friendly* ways of
>doing things might be taught, Terry. I love your perspective on these
>things.
>
>For example, let's take potty training for a 3, 4 or 5 year old (my
>impression is that autistic children train later than most NTs, so
>waiting certainly would be part of that). How would you make teaching
>the task more *autistic friendly?*
It wasn't the *teaching* I was thinking of, but how you (the autistic)
are actually supposed to *do* the task.
To use an example I've used before (I've just had a very draining day,
and I'm not really capable of much original thought ATM :)
Well intentioned people want to "help" us to lean to read peoples'
expressions - So what do they do? They come up with some system which
uses pictures or stylised images (sort of sophisticated smiley faces),
they prepare videos or computer programs to display and test, they may
even provide expression games.
And sure enough, at the end of all this - yes, people may well have
improved their ability to identify these images in the lab or the
classroom or at home, where this is the *only* task we're doing.
But what happens when you try to use this skill in real life - where
you have to recognise peoples' expressions *and* use them to modulate
your responses *and* listen to what they're saying *and* work out your
own reply ... all at the same time, and fast enough to *keep up* with
the conversation?
It all falls apart, because they've concentrated on *teaching* and
neglected the key issue of how you (with an autistic brain) are
supposed to manage a functions which NT brains can automatically "hand
off" to specialised parts of their brain.
Essentially they're assuming that all that's needed is education and
practice, and ignoring the reason *why* you need help in the first
place, the fact that you're autistic.
It's about teaching "autistic friendly" ways of *doing*, rather than
about "autistic friendly" ways of teaching (though these are
important too). How we (autistics) are actually supposed to *perform*
these tasks (and be able to sustain this functionality without falling
behind or collapsing from exhaustion).
Hope this clarifies what I was talking about (even though it doesn't
answer your question about potty training :)
--
Terry
The Autist formerly known as
obviously working in a less sensitive time, but the techniques of media
manipulation are the same. Maybe it is rather un PC to compare autism speaks
to a certain totalitarian party, maybe I should take that back and compare
them to $cient0logy instead.
Go ahead and despise me, deny me, decry me, I won't lay down die for you.
--
şT
L'autisme c'est moi
"Space folds, and folded space bends, and bent folded space contracts and
expands unevenly in every way unconcievable except to someone who does not
believe in the laws of mathematics"
<mrde...@yahoo.com> wrote in message
news:1176537570.6...@d57g2000hsg.googlegroups.com...
Terry Jones
<o...@ym.andius> wrote:
>Goebells was
>obviously working in a less sensitive time, but the techniques of media
>manipulation are the same. Maybe it is rather un PC to compare autism speaks
>to a certain totalitarian party, maybe I should take that back and compare
>them to $cient0logy instead.
The difference between "propaganda" and "advertising" (if there *is*
any real difference) seems to be that it attempts to achieve and
sustain broad memic change, rather than relatively narrow ones ("buy
this", "use our services", "feel good about our company").
But then again you have political "advertising", and as you mention
there are religious and cult organisations which also "advertise", so
it's not at all clear where advertising transitions into propaganda.
There's the "big lie" of course - but is that any different from the
attempts of the tobacco companies to discredit the smoking / lung
cancer link?
Advertising is though of as being commercially directed, and
propaganda politically directed - but there are efforts by commercial
groups to change public opinion to supporting (or at least not
opposing) legislation and action which favours them. Car companies and
global warming, agribusiness and subsidies and tariffs, etc..
Governments want uncritical "loyalty", businesses want uncritical
consumers, neither want people to think for themselves.
--
Terry
MauiJNP
>It is nevertheless mindlessly targetted for elimination
not by everyone
>
> replacing it with something equally useful.
>
not true for the kids I work with
MauiJNP
>>> am
>>> against. I think behavioural interventions do get results and not just
>>> for
>>> people with autism but for almost anything but nothing jusitifes putting
>>> a
>>> child through the equivalent of a work week to do it.
>>
>>I agree, 110%. Also, nothing justifies aversives, punishments, etc.,
>>in ABA (et al) type situations.
>>
> You know, I don't think autistic children are different from NT
> children in how they should be treated. My parenting philosophy is
> that the best way to teach is to model good behavior rather than to
> try to get a child to do things when you are doing the opposite.
> There are a few things that might change for autistic children in this
> post, but not that many.
>
> Positive Parenting Methods
>
> First and foremost, model the behavior you want your child to emulate.
> Children learn what they live. Teach by example, not words.
>
> Second, assume your child is good even when he misbehaves. Understand
> that his actions have an underlying developmental reason.
>
> Third, state your rules and requests in positive ways, not negative
> ones. Redirect her to things she can do rather than trying to keep
> her away from things without alternatives. Keep "nos" to a minimum.
>
> Fourth, explain. Make sure you have his attention. You may need to
> go closer to him, to touch his shoulder.
>
> Fifth, always try to look for the underlying cause of the behavior and
> address that so that the need is actually met in acceptable ways. Give
> her choices between many things that are acceptable to you
>
> Sixth, give him warnings of transitions so that they become easier to
> manage. Children, like adults, need to complete activities they are
> absorbed in. A timer helps with this.
>
> Seventh, allow for time-outs when your emotions or hers are out of
> control. Time-outs can be used non-punitively to allow both the adult
> and child to regain control of their emotions. Teach her to count
> to 10, to breathe, to walk away by modelling the techniques you use to
> manage your anger.
>
> Eighth, say what you mean and mean what you say. Don't give a lot of
> warnings, give one and then act. Give him time to comply, but follow
> through.
>
> Ninth, plan for situations before they arise. Try to stay calm
> yourself. Allow her to vent her feelings and accept them.
>
> Tenth, as your child grows, involve him in making the rules and
> choosing the consequences for breaking them Brainstorm and problem
> solve with him.
>
> Eleventh, make amends when you make a mistake. Apologize to your child
> when you have made a mistake. Accept his apologies gracefully as
> well.
>
> Twelfth, give your child responsibility for real tasks that help make
> your family work, keeping the chores within her developmental stage
> and allowing her input into what the chores should be and when
> to do them.
>
This is a lot of what I tell parents of the kids I work with. This is a
good post.
MauiJNP
>>
>> It would be pointless to try and convince you otherwise so I won't. I
>> disagree with you and I really don't care. I think you are wrong but you
>> are entitled to your own opinions, as I am too. You think it is abusive
>> to provide therapy to autistic individuals and I think it is
>> neglectful/abusive not to. End of story.
>>
>
> My son currently is not in therapy of any kind, has only had therapy for 6
> weeks at the beginning of this year, gross and fine motor OT and he is
> six. I take huge offense with your assertion that as a parent of an
> autistic child not in therapy I am abusive/neglectful. I see why you
> would say that though, it is your bread and butter after all. A lot of
> bread and butter in fact, it's very expensive to provide therapy. In this
> area it starts at $30 an hour. You see, as far as I'm concerned, anyone
> who is not autistic and is making their living because of autism, really
> can't speak without bias about autism.
Just because you can't afford to pay for therapy or don't want to pay for
therapy doesn't mean you can't or aren't already doing therapy for your son
yourself. I am not saying you have to pay someone else for the therapy to
count, it just has to be given. And I don't think this just of autistic
children/parents. Any parents that don't teach their children things (like
communication, social skills, etc) are being neglectful/abusive.
BTW, where did you live? what state? In the state I live, PA, therapy is
paid for by the state and I am not making anywhere near $30 an hour.