Mare Ann wrote:
>>That said; I don't know of any connection between those conditions and
autism-spectrum.
	 [  snip  ]
>
> I just want something that talks about all sides of the situation.  For
instance, why I should AND why I shouldn't be concerned that I have "insert
physical ailment here".  There are things like Scotopic Sensitivity Syndrome
that I only just learned about.  We can't figure out if these things are
*actually* prevelant without the proper information.  Basically, we need sources
that inform us enough to tell us what to look out for, so that we can make out
our choices.

Hmm.  Do you not have access to the Google search engine?

If you do, then enter "Scotopic Sensitivity Syndrome" in the browser's
entry box and hit "search" or whatever your browser requires to start
the search.

When I did that, I was presented a page with 1-10 of nearly 13,000 URL
results, including these _inter_alia_:

http://www.autism.org/irlen.html

http://en.wikipedia.org/wiki/Scotopic_sensitivity_syndrome


*Somewhere* in the first 10-20 URLs you ought to find something close to
what you want.

>
>
>
>>Why?  Simple: There is no *objective* test for autism.  Better Med-Tech
>
> simply isn't an issue.>
>
> But if there isn't an objective test than we can't say anything either way. 
(Not that I think it's that subjective.  I had a fairly objector evaluator.)

What you call an "objective evaluator", in scientific terms would be
called a *subjective* evaluator.  There is no *objective* test, hence no
*objective* evaluator.

An objective test has well-defined end-points which are independent of
observer bias - among other criteria.

E.g.: Some entity in serum always is associated with some disease state.
   If its concentration in serum exceeds some "critical value", the
disease is presumed present.  Otherwise the disease is presumed absent.
   That is an objective test.

NB: An objective test could give wrong results, if its accuracy or
specificity is too low. "False negatives" or "false positives" might be
obtained.  But it's still an objective test; just not a very good one.

There is no objective test yet for anything on the autism-spectrum.
[That *I* know about; someone here will correct me if I'm wrong.]
There are subjective judgments by human evaluators, whose performance
still isn't checked against any credible *objective* standards.

- Bill

They prescribed you Haldol???!!?!?!!!!!

Holy crap, they should be shot.

Mircea Pauca <mpauca@...> said...
>     Greetings from Romania again !
>
>     Finally... I've met a psychiatrist (woman, ~40)
> knowledgeable enough not to mess it all up.
> She was in a public "policlinic" also specialized
> in youth, near a Polytechnic university campus.
>     She listened to my story of childhood,
> school performance, being bullied, pride with
> science, downs, now unease with work etc.
> and diagnosed me with "Asperger's trouble"
> without any prompting from me ;-)
>     She says it's hard to change much, what
> I most need now is some sort of *gentle*
> social "schooling" to reverse the life-long
> bad effect of being "thrown in the water to
> swim" and repeated mini-failures (or my
> exagerated perceptions of them, that keep
> me from trying and improving from mistakes).
> All good common-sense, and I agree.
>     She also prescribed, only as auxiliary
> to reduce anxiety:
> - Fluoxetine 20 mg/day
> - Clonazepam 2x 0.25 mg/day (morning and evening)
> The second one (Rivotril, the French brand) says
> it's only for reducing epileptic seizures ! but some
> Net research says it was good as social disinhibitor.
>
>     She also said the previous doc prescribing
> Haloperidol was "old-school" and inadequate.
>     I would have to tell you more when I'll
> see her again... after I get some papers to get
> the State Insurance to pay. (not very much like
> in the US, but like a normal specialist doctor).
> It seems she's interested in me as a "study case"...
>
>     Best wishes !
>     Mircea
>
>
>
>
>
>
> --
>
> Yahoo! Groups Links
>
>
>
>
>

http://www.drzur.com/dsmcritique.html

Towards the end under "DSM vs. The Village" there is an interesting
section on how people who are 'different' can be successfully integrated
within a society -- as opposed to the modern method of making everyone
fit into prescribed behavioral 'boxes'.

>Wow that's a cool site.  I think some AS people should create a parody
site showing the horrors of NT life.>

Check out: http://isnt.autistics.org/

-Marcie


---------------------------------
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[Non-text portions of this message have been removed]

>Very interesting and important autism site -- do read all the way
through, *don't* stop in the early pages (some of you will want to)!

http://www.gettingthetruthout.org>

I really like that she's encourage of people who have conventional speach to
speak up for others.  I feel weird sometimes talking to parents.  Oh yes, I've
gotten the bit about "You do so well", and while that maybe true, that wasn't
the point of whatever it was that I was talking about at time.

-Marcie


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[Non-text portions of this message have been removed]

>No, but you are probably on the VACTERL Association spectrum, which has
an extremely high rate of autistics.  If you were born with a hole in
your heart, then you're one of us; it means that something went very
strange early in development.>

Can you recommend any sources that talk about this in-depth, but in lay persons
terms.  When I googled this, I found the what the acronym stand for but then it
doesn't really explain anything.  Like what kind of vertebal anomalies and what
kind of limb abnomalities?

-Marcie


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[Non-text portions of this message have been removed]

>That said; I don't know of any connection between
those conditions and autism-spectrum.  Remember that "correlation is
not
the same as causation" (a well-known mantra in statistics textbooks).>

I just want something that talks about all sides of the situation.  For
instance, why I should AND why I shouldn't be concerned that I have "insert
physical ailment here".  There are things like Scotopic Sensitivity Syndrome
that I only just learned about.  We can't figure out if these things are
*actually* prevelant without the proper information.  Basically, we need sources
that inform us enough to tell us what to look out for, so that we can make out
our choices.


>Why?  Simple: There is no *objective* test for autism.  Better Med-Tech
simply isn't an issue.>

But if there isn't an objective test than we can't say anything either way. 
(Not that I think it's that subjective.  I had a fairly objector evaluator.)


>That would have been a *societal* mis-judgement (sterilize the
cretins).>

That wouldn't have happened, I don't stick out that much.  People just think I'm
quite and eccentric.

>Biologically, you'd have been as capable of child-bearing as (you may
be) now.>

I don't think so.  I would have been sick my entire life if I hadn't had
surgery, and my guess is that something like pregnancy would have killed me.

-Marcie


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[Non-text portions of this message have been removed]

Congratulations! :-)

--- Mircea Pauca <mpauca@...> wrote:

>     Greetings from Romania again !
>
>     Finally... I've met a psychiatrist (woman, ~40)
> knowledgeable enough not to mess it all up.
> She was in a public "policlinic" also specialized
> in youth, near a Polytechnic university campus.
>     She listened to my story of childhood,
> school performance, being bullied, pride with
> science, downs, now unease with work etc.
> and diagnosed me with "Asperger's trouble"
> without any prompting from me ;-)
>     She says it's hard to change much, what
> I most need now is some sort of *gentle*
> social "schooling" to reverse the life-long
> bad effect of being "thrown in the water to
> swim" and repeated mini-failures (or my
> exagerated perceptions of them, that keep
> me from trying and improving from mistakes).
> All good common-sense, and I agree.
>     She also prescribed, only as auxiliary
> to reduce anxiety:
> - Fluoxetine 20 mg/day
> - Clonazepam 2x 0.25 mg/day (morning and evening)
> The second one (Rivotril, the French brand) says
> it's only for reducing epileptic seizures ! but some
> Net research says it was good as social disinhibitor.
>
>     She also said the previous doc prescribing
> Haloperidol was "old-school" and inadequate.
>     I would have to tell you more when I'll
> see her again... after I get some papers to get
> the State Insurance to pay. (not very much like
> in the US, but like a normal specialist doctor).
> It seems she's interested in me as a "study case"...
>
>     Best wishes !
>     Mircea
>
>
>
>
>
> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
> Dying to be thin? Anorexia. Narrated by Julianne Moore.
> http://us.click.yahoo.com/pL1caD/sbOLAA/xGEGAA/cPItlB/TM
>
--------------------------------------------------------------------~->
>
>
> --
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

On Fri, 2005-09-30 at 03:00 +0000, manwithnoname37 wrote:

> It would go on about the boring people whose lives are full of the same
> things everyone else life is full of and the only way they can
> differentiate themselves from the rest of the world is by driving
> ridiculously oversized SUVs.

Driving rediculously oversized SUVs, like everybody else?

This phenomenon is quite prevalent where I live, though.

The latest trend seems to be fancy things to do with the wheels in one's
rediculously oversized SUV.  I guess that way I could have fancier
wheels on large SUV that otherwise looks like everybody elses.

Dave

>For some reason, the better-informed a patient one is, the more
>"pooh-pooh" the doctors like to be, and I think it is
>counter-productive and disrespectful.

I think doctors are used to hearing "I have a headache, I think it must be
an aneurysm" from patients who heard something about it on the news or from
a friend, and make a stupid assumption from generic symptoms.  The fact that
doctors have thick skin about it is unfortunate but not really surprising.
They're not used to aspie nerds who will spend hours researching something
online, then tell the doctor what they know they have so it can be
confirmed.

Greetings from Romania again !

     Finally... I've met a psychiatrist (woman, ~40)
knowledgeable enough not to mess it all up.
She was in a public "policlinic" also specialized
in youth, near a Polytechnic university campus.
     She listened to my story of childhood,
school performance, being bullied, pride with
science, downs, now unease with work etc.
and diagnosed me with "Asperger's trouble"
without any prompting from me ;-)
     She says it's hard to change much, what
I most need now is some sort of *gentle*
social "schooling" to reverse the life-long
bad effect of being "thrown in the water to
swim" and repeated mini-failures (or my
exagerated perceptions of them, that keep
me from trying and improving from mistakes).
All good common-sense, and I agree.
     She also prescribed, only as auxiliary
to reduce anxiety:
- Fluoxetine 20 mg/day
- Clonazepam 2x 0.25 mg/day (morning and evening)
The second one (Rivotril, the French brand) says
it's only for reducing epileptic seizures ! but some
Net research says it was good as social disinhibitor.

     She also said the previous doc prescribing
Haloperidol was "old-school" and inadequate.
     I would have to tell you more when I'll
see her again... after I get some papers to get
the State Insurance to pay. (not very much like
in the US, but like a normal specialist doctor).
It seems she's interested in me as a "study case"...

     Best wishes !
     Mircea

Wow that's a cool site.  I think some AS people should create a parody
site showing the horrors of NT life.

It would go on about the boring people whose lives are full of the same
things everyone else life is full of and the only way they can
differentiate themselves from the rest of the world is by driving
ridiculously oversized SUVs.

All I can say after reading this is WOW, OH MY GOD  and You go girl.
If this is true and seeing and being on each side I can see the facts
in her voice. That was lost for so long and now found.

I find this thread interesting from the perspective of being an
accurate patient. In 2003 I came down with a sudden, very debilitating
set of symptoms, which I catalogued and researched. When I went to the
doctor, I had a sheet printed out on which I listed them all, and
suggested what I thought was most likely, based on my research: Lupus
or Human Parvovirus B19, and I was leaning toward the latter.

She was "amused" by my efforts, and I basically had to BEG her to do
the Parvo blood test. She was SO CERTAIN that I must be making it up,
you see. However, four days later I got a call on my voicemail saying,
"Well, Miss Self-Diagnoser, it appears you DO have Parvo after all. I
am calling in your prescription".

Hah.

Next one is about girly bits, although not terribly graphic. Just a
warning.

In January of this year, I went to my OB-GYN, telling her that I was
STILL having abdominal discomfort (since the prior June) and that
things still "felt different" when I was having sex (with the same
partner I'd been with since 2001). I told her I was tired of knowing
something "wasn't right" and I insisted she do an ovarian cancer test
and an ultrasound, even though she didn't feel anything when palpating.


She was doing the ultrasound and said, "My, my. You really do know your
body well, don't you?" Turns out my Polycystic Ovarian Syndrome was
acting up, and I had 4-centimeter and a 6-centimeter cysts on my
ovaries, one on each side.

So, the thing that pissed me off is that I had been complaining of the
"discomfort" since the prior June, and she had just suggested I "try
new positions", which made no sense since it was the same man, and why
would a position that used be comfortable SUDDENLY start being painful.
It was illogical. And I hate it that being well-informed is somehow
tantamount to being a hypochondriac. I have NEVER gone in with a
complaint that turned out to be nothing. Why would I waste the time &
money?

For some reason, the better-informed a patient one is, the more
"pooh-pooh" the doctors like to be, and I think it is
counter-productive and disrespectful.

Shannon :-)


--- Scott Nordlund <gsn10@...> wrote:

> > >And if you say "I know my body better than anyone else, I can read
> up
> >and diagnose myself", you run the very real risk of becoming a
> >hypochondriac>
> >
> >..Only if the person is looking for attention, I'm looking for
> information,
> >but doctor's are too busy for that, no matter how much money we dole
> out.
>
> What I actually meant by this was something rooted in paranoia rather
> than
> malingering to get sympathy.  Though I think a lot of times I think
> people
> have a bit of both (thinking of an aunt I had who claimed she "might
> not be
> here much longer" for at least some 40 years before she finally died
> in her
> seventies)
>
>
>
>
> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
> Dying to be thin? Anorexia. Narrated by Julianne Moore.
> http://us.click.yahoo.com/pL1caD/sbOLAA/xGEGAA/cPItlB/TM
>
--------------------------------------------------------------------~->
>
>
> --
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Denise DeGraf wrote:
> WD Loughman wrote:
>
>>I was born with a
>>hole in my heart.  I had less oxygen flowing through me for the first
>>2 and 1/2 years of my life.  Did this cause an anomoly in my brain,
>>exagerating a latent tendency toward AS???
>
> No, but you are probably on the VACTERL Association spectrum, which has
> an extremely high rate of autistics.  If you were born with a hole in
> your heart, then you're one of us; it means that something went very
> strange early in development.
>
>>I don't know of any connection
>>between those conditions and autism-spectrum.

Hoo-boy!  And oh-gawd!  I blew it.

>
> Yes, there is a very strong connection.  There's a very strong tendency
> for people born with conditions like VACTERL Association and CHARGE

THANK YOU for reminding me!  AND bringing me up-to-date.  My direct
knowledge of VACTERL and CHARGE in fact was years out of date, and I
relied on memory without further checking.

As you'll have seen from my CV, my specialty is more centered on the
physical bits of clinical genotype (cells, chromosomes).  I'm less "up"
on some bits of the clinical phenotypes.

My Bad, and I apologize to all.

As I've remarked elsewhen in this forum and elsewhere:
   Always question the source of any info found on the Internet;
   always apply your very best critical thinking to it.
In other words (from the 60s): "Question Authority".

Repeating myself, I'm on this forum to learn, like everyone else.
Thanks again!

> Syndrome to also turn out autistic.  So high, in fact, that autism often
> isn't separately diagnosed in us, but is seen as a case of "V/C people
> are hypersensitive to sensory input, tend to speak later..." etc.
> VACTERL and CHARGE are both sets of rare abnormalities known as "neural
> tube" defects; they are the result of something going odd in the
> earliest stage of fetal development, and result in one or more major
> organs (brain, kidneys, heart, stomach, etc.) developing strangely.
>

Once more, Thanks!

>>What is it then?  Closer attention by "the profession" is
>>*subjectively* giving autism diagnoses to children (and now also
>>adults) who never would have been considered 15-30 years ago.
>
>
> There's also that the definition of autism itself has been expanded
> (correctly imho)

I agree - completely - and I did know that.

>             -- so people that would formerly have been misdiagnosed
> as mentally retarded, attention-deficit, or other things as kids are now
> being diagnosed autistic.

Yes; that happened to a first cousin.  Identified non-specifically as
"retarded"; a few years later she was re-diagnosed as autistic.

>
>>I'm on your side. Ah, so long as we remember: there'll always remain
>>some fraction of autists who *aren't* so fortunate as you and I.
>>*They* do need all the help/intervention/etc they can get. *We*
>>should make sure they get it!  *We* should not leave it to the
>>dubious kindness of NT strangers.

The thrust of that remark was meant to bend some of the militant
attitudes expressed in some Asperger/"autism" forums.  Too often I sense
a "we autists" flavor to remarks on the Internet which - IMO - seem to
leave physically impaired autists out of the "we" loop.

I'd *love* to hear of autistic shrinks and psychologists caring for
autistic patients.  ...Autistic hospital aides, nurses, etc.  Doubtless
some exist; but they're not getting much press??

Maybe for obvious reasons.  Had *my* condition been known to my
employers (a major metropolitan childrens hospital), I wonder if my
position would have been so secure.

>
>
> Speaking as one of the "fraction" of autistics that you probably
> wouldn't consider "fortunate" (I'm not toilet trained, I usually lack
> speech, I am on SSI, I have meltdowns easily, etc.) -- we do want help

That's true - I *don't* consider those attributes "fortunate" - and I
bet you don't either.  *Irrelevant* maybe; but not *fortunate* surely?

> going about our daily lives in our own way, but the "interventions" like
> ABA, drugging, and all of that is no more appealing for us than it is
> for you.  :-)

Of *course* I don't approve of mindless "interventions" - "standard of
practice" or not.  But standards change, thank God, and sometimes for
the better.  Heark back to my comments about having autists in charge.
Maybe thereby arriving at "interventions" of which we might all approve?

>               Not sure if you're aware, but the person (Amanda Baggs)
> that has written the majority of articles at Autistics.org isn't "high
> functioning" either, and it's pretty clear she's not in favor of
> "interventions".

I was not aware of her situation.  More power to her, and to you.

Thanks again for your reminders to me, and the pleasingly temperate tone
with which they were delivered.


- Bill   (Berkeley, California)

My son was born with Coarctation of the aorta and a hole in his heart.  He
had surgery at 2 1/2 yrs old and they replaced part of his aorta with an
artery from his left arm.  He has been doing fine ever since..... well
except all of his social problems (AS) .  But wow - I never knew there was a
connection.

Thanks for sharing!

Melissa mom to Josh 14- AS


-------Original Message-------

From: Denise DeGraf
Date: 09/29/05 12:14:30
To: AS-and-Proud-of-it@yahoogroups.com
Subject: Re: [AS-and-Proud-of-it] Re: Re: Re: Just thinking out loud.

WD Loughman wrote:
> I was born with a
> hole in my heart.  I had less oxygen flowing through me for the first
> 2 and 1/2 years of my life.  Did this cause an anomoly in my brain,
> exagerating a latent tendency toward AS???

No, but you are probably on the VACTERL Association spectrum, which has
an extremely high rate of autistics.  If you were born with a hole in
your heart, then you're one of us; it means that something went very
strange early in development.


> I don't know of any connection
> between those conditions and autism-spectrum.

Yes, there is a very strong connection.  There's a very strong tendency
for people born with conditions like VACTERL Association and CHARGE
Syndrome to also turn out autistic.  So high, in fact, that autism often
isn't separately diagnosed in us, but is seen as a case of "V/C people
are hypersensitive to sensory input, tend to speak later..." etc.
VACTERL and CHARGE are both sets of rare abnormalities known as "neural
tube" defects; they are the result of something going odd in the
earliest stage of fetal development, and result in one or more major
organs (brain, kidneys, heart, stomach, etc.) developing strangely.


> What is it then?  Closer attention by "the profession" is
> *subjectively* giving autism diagnoses to children (and now also
> adults) who never would have been considered 15-30 years ago.

There's also that the definition of autism itself has been expanded
(correctly imho) -- so people that would formerly have been misdiagnosed
as mentally retarded, attention-deficit, or other things as kids are now
being diagnosed autistic.


> I'm on your side. Ah, so long as we remember: there'll always remain
> some fraction of autists who *aren't* so fortunate as you and I.
> *They* do need all the help/intervention/etc they can get. *We*
> should make sure they get it!  *We* should not leave it to the
> dubious kindness of NT strangers.

Speaking as one of the "fraction" of autistics that you probably
wouldn't consider "fortunate" (I'm not toilet trained, I usually lack
speech, I am on SSI, I have meltdowns easily, etc.) -- we do want help
going about our daily lives in our own way, but the "interventions" like
ABA, drugging, and all of that is no more appealing for us than it is
for you.  :-)  Not sure if you're aware, but the person (Amanda Baggs)
that has written the majority of articles at Autistics.org isn't "high
functioning" either, and it's pretty clear she's not in favor of
"interventions".


--




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[Non-text portions of this message have been removed]

Can you give more details on VACTERL Association
syndrome and CHARGE syndrome?

And how, btw, would you define "high functioning"? If
you hadn't made the remarks you did in your post, I
would have never associated you with anything but
"high functioning".  (which to me means, essentially,
able to function more-or-less independently).

Jeffrey Smith

--- Denise DeGraf <moggymania@...> wrote:

> WD Loughman wrote:
> > I was born with a
> > hole in my heart.  I had less oxygen flowing
> through me for the first
> > 2 and 1/2 years of my life.  Did this cause an
> anomoly in my brain,
> > exagerating a latent tendency toward AS???
>
> No, but you are probably on the VACTERL Association
> spectrum, which has
> an extremely high rate of autistics.  If you were
> born with a hole in
> your heart, then you're one of us; it means that
> something went very
> strange early in development.
>
>
> > I don't know of any connection
> > between those conditions and autism-spectrum.
>
> Yes, there is a very strong connection.  There's a
> very strong tendency
> for people born with conditions like VACTERL
> Association and CHARGE
> Syndrome to also turn out autistic.  So high, in
> fact, that autism often
> isn't separately diagnosed in us, but is seen as a
> case of "V/C people
> are hypersensitive to sensory input, tend to speak
> later..." etc.
> VACTERL and CHARGE are both sets of rare
> abnormalities known as "neural
> tube" defects; they are the result of something
> going odd in the
> earliest stage of fetal development, and result in
> one or more major
> organs (brain, kidneys, heart, stomach, etc.)
> developing strangely.
>
>
> > What is it then?  Closer attention by "the
> profession" is
> > *subjectively* giving autism diagnoses to children
> (and now also
> > adults) who never would have been considered 15-30
> years ago.
>
> There's also that the definition of autism itself
> has been expanded
> (correctly imho) -- so people that would formerly
> have been misdiagnosed
> as mentally retarded, attention-deficit, or other
> things as kids are now
> being diagnosed autistic.
>
>
> > I'm on your side. Ah, so long as we remember:
> there'll always remain
> > some fraction of autists who *aren't* so fortunate
> as you and I.
> > *They* do need all the help/intervention/etc they
> can get. *We*
> > should make sure they get it!  *We* should not
> leave it to the
> > dubious kindness of NT strangers.
>
> Speaking as one of the "fraction" of autistics that
> you probably
> wouldn't consider "fortunate" (I'm not toilet
> trained, I usually lack
> speech, I am on SSI, I have meltdowns easily, etc.)
> -- we do want help
> going about our daily lives in our own way, but the
> "interventions" like
> ABA, drugging, and all of that is no more appealing
> for us than it is
> for you.  :-)  Not sure if you're aware, but the
> person (Amanda Baggs)
> that has written the majority of articles at
> Autistics.org isn't "high
> functioning" either, and it's pretty clear she's not
> in favor of
> "interventions".
>


Blessed be He Who created me according to His will



__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com

Very interesting and important autism site -- do read all the way
through, *don't* stop in the early pages (some of you will want to)!

http://www.gettingthetruthout.org


(Yes, I do have commentary I could add, but I don't want to bias
anybody.  :)

WD Loughman wrote:
> I was born with a
> hole in my heart.  I had less oxygen flowing through me for the first
> 2 and 1/2 years of my life.  Did this cause an anomoly in my brain,
> exagerating a latent tendency toward AS???

No, but you are probably on the VACTERL Association spectrum, which has
an extremely high rate of autistics.  If you were born with a hole in
your heart, then you're one of us; it means that something went very
strange early in development.


> I don't know of any connection
> between those conditions and autism-spectrum.

Yes, there is a very strong connection.  There's a very strong tendency
for people born with conditions like VACTERL Association and CHARGE
Syndrome to also turn out autistic.  So high, in fact, that autism often
isn't separately diagnosed in us, but is seen as a case of "V/C people
are hypersensitive to sensory input, tend to speak later..." etc.
VACTERL and CHARGE are both sets of rare abnormalities known as "neural
tube" defects; they are the result of something going odd in the
earliest stage of fetal development, and result in one or more major
organs (brain, kidneys, heart, stomach, etc.) developing strangely.


> What is it then?  Closer attention by "the profession" is
> *subjectively* giving autism diagnoses to children (and now also
> adults) who never would have been considered 15-30 years ago.

There's also that the definition of autism itself has been expanded
(correctly imho) -- so people that would formerly have been misdiagnosed
as mentally retarded, attention-deficit, or other things as kids are now
being diagnosed autistic.


> I'm on your side. Ah, so long as we remember: there'll always remain
> some fraction of autists who *aren't* so fortunate as you and I.
> *They* do need all the help/intervention/etc they can get. *We*
> should make sure they get it!  *We* should not leave it to the
> dubious kindness of NT strangers.

Speaking as one of the "fraction" of autistics that you probably
wouldn't consider "fortunate" (I'm not toilet trained, I usually lack
speech, I am on SSI, I have meltdowns easily, etc.) -- we do want help
going about our daily lives in our own way, but the "interventions" like
ABA, drugging, and all of that is no more appealing for us than it is
for you.  :-)  Not sure if you're aware, but the person (Amanda Baggs)
that has written the majority of articles at Autistics.org isn't "high
functioning" either, and it's pretty clear she's not in favor of
"interventions".

maurice frank wrote:
> AS by definition is at the high end of
> the spectrum. If indeed there is a linear spectrum at all: for its
> connection to Kanner autism is entirely speculative resting on some
> shared themes.

It's not speculative -- people like me have been diagnosed alternately
with both depending on the situation.  It's also not "by definition" at
an "end" of the spectrum; the official definitions themselves are
self-contradictory, in fact.  (The "official" definition in the DSM-IV
states that there must both be delays and no delays, plus that there
must be language delays *and* no language delays.  The DSM committee is
dropping the AS/Autism distinction because of this.)


> In classical serious autism the majority were mentally
> disabled.  "Low functioning".

No, they weren't.  The "majority" in autism were institutionalized in
the past -- I was supposed to be -- and because of *that* were far more
disabled/delayed than they actually had to be.  Many of us also have
apraxia (can't speak) under various conditions, and rely primarily on
typing or picture communication systems -- but nobody knew that until
autistics started being given the chance to use them.  In cases where
non-speaking autistics weren't given them, they were scored extremely
low on IQ tests; as soon as the *same people* were given the ability to
express themselves verbally through images or text, it turned out that
they had extremely high IQs.


>  LFA is the opposite of HFA, see?

No, it's not at all.  An autistic can be diagnosed all over the spectrum
at different moments of time or different locations.  Also, the
definition for what constitutes "functioning" is amazingly random.  Some
say it's whether one speaks -- but you can have an autistic that's
unable to do most self-care and is obviously autistic (looks "low
functioning") yet speaks.  Some claim it's IQ -- but then there are high
numbers of autistics that can't speak, can't do self-care on their own,
look extremely autistic, yet have an extremely high IQ.  Others say it's
how we appear -- but there are autistics (especially females) that can
sham NT really well for periods of time, or don't draw attention to
themselves, yet can't speak, can't do self care.

In other words, there's no "opposite" in a spectrum that is so
multi-dimensional.


> Developmental disorder is a dodgy term, and I think insulting. The
> obvious reason: it gets applied to intelligent people, yet it sounds
> similar to developmental delay. Any agenda of talking about
> intelligent unconventional people in the same language as the learning
> disabled, is deeply sinister. It implies aconspiracy of social
> invalidation.

I'm developmentally delayed, yet extremely intelligent and certainly
unconventional.


>   (Developmental delay is not a euphemism for
>  > retardation,
>
> I worry that it is. I know (through a church,not through anything to
> do with AS) a retarded girl whose condition is offically called
> "global developmental delay". Any shrinks' language use that risks
> confusing functional intelligent people with that is immeasurably
> offenisve.

Only if you're a bigot and too insecure to consider that she is as human
as you are, and probably a much nicer person.  Personally, I would
rather be associated with somebody that has "global developmental delay"
than somebody that is a bigoted jerk.

--- In AS-and-Proud-of-it@yahoogroups.com, Adnan Rafiq
<adnan_rafiq@y...> wrote:
> One keeps reading the strong correlation between
> Asperger/HFA/PDD-NOS (take your pick) and mental
> retardation.
Where do you keep reading that? AS by definition is at the high end of
the spectrum. If indeed there is a linear spectrum at all: for its
connection to Kanner autism is entirely speculative resting on some
shared themes.

Basically, the literature will have you
> believe that a vast majority of people on the spectrum
> are mentally retarded (they may use euphemisms as
> developmental delay). How true is that?

You have to remember that the term "the spectrum" is supposed to refer
(questionably) to the whole of what is perceived to have anything to
do with autism. In classical serious autism the majority were mentally
disabled. "Low functioning". LFA is the opposite of HFA, see?

--- In AS-and-Proud-of-it@yahoogroups.com, Shannon Terra
<shannon_terra@y...> wrote:
> I do not believe "developmental delay" always == "retarded". Although
> perhaps "retarded" might always == "developmental delay".

Developmental disorder is a dodgy term, and I think insulting. The
obvious reason: it gets applied to intelligent people, yet it sounds
similar to developmental delay. Any agenda of talking about
intelligent unconventional people in the same language as the learning
disabled, is deeply sinister. It implies aconspiracy of social
invalidation.

--- In AS-and-Proud-of-it@yahoogroups.com, Denise DeGraf
<moggymania@g...> wrote:
   (Developmental delay is not a euphemism for
> retardation,

I worry that it is. I know (through a church,not through anything to
do with AS) a retarded girl whose condition is offically called
"global developmental delay". Any shrinks' language use that risks
confusing functional intelligent people with that is immeasurably
offenisve.

On Thu, 2005-09-29 at 01:03 -0700, WD Loughman wrote:

> Better MT *is* known responsible for an apparent increased incidence of
> some conditions.  Earlier detection of ever smaller cancers, for
> example, *doesn't* indicate "cancer is on the rise".  It's not more
> cancers; it's the *same* cancers seen earlier in their development.

My favorite quote from a very obviously fradulent "alternative" medicine
newsletter:

         "despite all the medical breakthroughs, the rate of cancer,
         Alzheimer's diabetes and many other diseases is steadily on the
         rise, apart from heart attacks and strokes..."

Well, um, duh.  We've made great strides in prevent both heart attack
and stroke.  People are living longer, and having more opportunity to
get other diseases.

I just love it when people say something to make a point, when their
statement actually ends up being a good argument for the opposite point.

Dave

> >And if you say "I know my body better than anyone else, I can read up
>and diagnose myself", you run the very real risk of becoming a
>hypochondriac>
>
>..Only if the person is looking for attention, I'm looking for information,
>but doctor's are too busy for that, no matter how much money we dole out.

What I actually meant by this was something rooted in paranoia rather than
malingering to get sympathy.  Though I think a lot of times I think people
have a bit of both (thinking of an aunt I had who claimed she "might not be
here much longer" for at least some 40 years before she finally died in her
seventies)

Adnan Rafiq wrote:
> One keeps reading the strong correlation between
> Asperger/HFA/PDD-NOS (take your pick) and mental
> retardation. Basically, the literature will have you
> believe that a vast majority of people on the spectrum
> are mentally retarded (they may use euphemisms as
> developmental delay). How true is that?

Not very.  Some on the autism-spectrum indeed are mentally and
neurologically impaired.  The "vast majority" are not.  Though for other
reasons sometimes they appear so to "NT" people.

>
> Based on groups and forums such as these, I find that
> there are a lot of people with ASD who hold good jobs,
> went to college and lead (or have learned to live)
> fairly normal lives.
>
> My son has several speech delay and I think he is
> definitely immature for his age (cognitive and
> social). He is four now and speech is definitely
> picking up but I can see how someone would label him
> "slow". He also has anxiety issues. He was labeled as

My daughter developed *very* similarly.  She's now a programmer-analyst
at a good university, and married with two grown children.

> PDD-NOS recently.

That's too often a euphemism for "damned if we know..."
I *don't* mean that as a joke (though I wish it were).

>
> I am just trying to get a sense of what the future
> holds for him. The medical community pretty much
> paints a picture as bleak as possible. Are there any
	 [  snip  ]

The medical community largely is "behind the curve" in this new-ish
developing field, which is changing rapidly.

You'll have read many letters in this forum from autists with the same
kinds of success you want for your son.  Those writers are living proof
that your son has a chance.  Further, there other non-forum individuals
who've done well indeed; some have published their stories.

Google is your friend.  Try "high functioning autism", and chase down
the dozens of promising links.  ...And all the subsidiary links.  You
may be pleasantly surpised at what you find.

Continue to ask probing questions _re_ everything your son's doctors
tell you.  Don't be shy about getting second and third opinions.
Continue your own research, and think very critically about all
information you get.  There's a *lot* of mis-information out there.

Finally:
I'm a professional geneticist with advanced degrees from UC Berkeley and
AMA Board certification in a clinical specialty. Over many decades I
held responsible positions in well-known research laboratories,
hospitals and medical schools.

I'm also AS/HFA.  Be heartened.

- Bill

Mare Ann wrote:
>>>thoracic outlet syndrome,
>
>
>>"Pain in the neck"?  ;)
>>Exercise, injury, congenital anomaly, pregnancy, ...
>
>
> Not unless I've been pregnant for the last couple of years ;-)
	 [  snip  ]


> Generally, what I was trying to get at (and I'm sure you're already aware) is
that if we assume that AS is genetic, then perhaps the same genes are linked to
certain physical parts that may or may not cause problems, depending exactly how
it is expressed.  But then there are other things to take into account. For
example, I was born with a hole in my heart.  I had less oxygen flowing through
me for the first 2 and 1/2 years of my life.  Did this cause an anomoly in my
brain, exagerating a latent tendency toward AS???

Certainly it's one possibility among many.  It shouldn't be ruled out on
anyone's mere whim.  That said; I don't know of any connection between
those conditions and autism-spectrum.  Remember that "correlation is not
the same as causation" (a well-known mantra in statistics textbooks).

>
> I wonder, if there is a connect between AS and health, if better medical
technology is in part of the reason for the apperant rise in austim.

Better MT *is* known responsible for an apparent increased incidence of
some conditions.  Earlier detection of ever smaller cancers, for
example, *doesn't* indicate "cancer is on the rise".  It's not more
cancers; it's the *same* cancers seen earlier in their development.

On the numbers alone, autism-spectrum *is* "on the rise".  BUT, that
can't be new and better MT.

Why?  Simple: There is no *objective* test for autism.  Better Med-Tech
simply isn't an issue.

What is it then?  Closer attention by "the profession" is *subjectively*
giving autism diagnoses to children (and now also adults) who never
would have been considered 15-30 years ago.

Are there other possibilities?  Of course; but none to survive critical
scrutiny.

> I know if I was born a century ago, even if I had managed to make it to
adulthood, I would never had been able to have children (I'm not having them
anyway, but that's by choice).

That would have been a *societal* mis-judgement (sterilize the cretins).
   Biologically, you'd have been as capable of child-bearing as (you may
be) now.

> When I went looking for info on leaky gut syndrome, I ran across a bunch of
stuff hoping that this was a way to "cure" AS.  Screw the cure, I just want to
be healthy.  In Austin, TX, some people have bumperstickers that say "Keep
Austin Weird".  Maybe we should have some that say "Keep Autism Weird".  Hey, it
could work.

I'm on your side.
Ah, so long as we remember: there'll always remain some fraction of
autists who *aren't* so fortunate as you and I.  *They* do need all the
help/intervention/etc they can get.
    *We* should make sure they get it!  *We* should not leave it to the
dubious kindness of NT strangers.

- Bill   (Berkeley, California)

Retardation is a correct word, but mental retardation
is not a correct phrase in talking about autism.
The basic meaning of retarded is, after all, delayed
or slowed down.  And compared to NT, autistic people
are retarded.  But not mentally.  Our brains are as
good as or better than the average NTs when it comes
to cognition--thinking.
We are socially and sometimes emotionally retarded;
the parts of our brain that process person to person
interaction, and that let us process our emotions, are
different from normal, and that means we are
"retarded" in those areas. (Sensory issues are
important, but ancillary.) But because our cognitive
abilities are good, we can learn, and make up most, if
not all, of the differences.  It may, however, mean
that we don't get to the point an NT would be at (for
instance) 20 until we're 30.  And the more help we get
from others, the quicker we can catch up.
You'll probably find that educational and later
employment issues are easier to solve than social
issues.  Your son will probably find self sufficient
employment about the same time as others his age.
Where he may have a problem is finding a romantic
partner--if he even wants one.  Lots of us are very
introverted.  A lot of NTs don't seem to understand
that we can exist on our own, with few or no emotional
attachments.  They assume that we are terribly lonely
even though we are far from feeling lonely.  Your son
may or may not turn out to be introverted; if he is,
please don't try to force him to be something other
than that.
(I did find that participating in an acting group in
my early school years, and again in college, was an
excellent help in learning how to deal with other
people; and having a sales job has also helped.  These
may not seem logical things to do when you're
autistic, but I think you should consider it for your
son down the road.  They are structured things
(important when you're autistic) and therefore safe
ways of learning how to deal with people.  And I
wasn't much older than your son when my mother put me
in a kid's acting class--I was either 5 or 6.

Jeffrey Smith


Blessed be He Who created me according to His will



__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com

Adnan Rafiq wrote:
> One keeps reading the strong correlation between Asperger/HFA/PDD-NOS
> (take your pick) and mental retardation. Basically, the literature
> will have you believe that a vast majority of people on the spectrum
> are mentally retarded (they may use euphemisms as developmental
> delay). How true is that?

It's not the case; autism (*and* developmental delay) don't imply
retardation at all.  (Developmental delay is not a euphemism for
retardation, it means that the person is taking a different
developmental path and is ahead in some things while behind in others.)
   There has been some misunderstanding where because we do things
differently (and therefore don't fare well on tests that rely primarily
on NT-type knowledge/cognition) we're mislabeled inappropriately as
retarded, but in terms of intelligence, we have the same spread as NTs.


> Based on groups and forums such as these, I find that there are a lot
> of people with ASD who hold good jobs, went to college and lead (or
> have learned to live) fairly normal lives.

Leading a "normal" life doesn't imply absence/presence of retardation,
however.  Nor are those all indicators of long-term ability, as much as
where the person lives and how autism-friendly their life has been.  If
they've wasted most of their energy trying to fit in, lack support for
doing things their way, and live in an autism-unfriendly environment,
they aren't going to go as far (or last as long) as if they hadn't.

I have a degree in English from UC Berkeley, primarily because I did
have support both in my education and my day-to-day life.  I'm also
openly, obviously autistic; I make no effort to hide it.  My partner
wastes vast amounts of energy hiding his autism, was punished for
showing he is different, lacks everyday support/acceptance, and had to
drop out of college.


> I am just trying to get a sense of what the future holds for him. The
> medical community pretty much paints a picture as bleak as possible.

Yes, because they have a lot of money invested in the "cures" or
attempts to normalize us... For whatever reason, they also don't
consider the idea of giving accommodation/acceptance to autistics as
they do to those with other physical disabilities.  (That's a huge shock
for me to deal with, as I was just in the "physical disability"
community until I was 24, and was horrified when I discovered the "hide
it" attitude towards disability in the autism community!)


> Are there any people here who had developmental delays (immaturity,
> cognitive issues, etc.) who eventually grew out of it? I know that
> there is no "cure", but by "growing out" I mean if they are able to
> take care of themselves and goto college and hold a good (if not
> great) job?

It's not "growing out of it" for us to do any of those things; in fact,
those things are far more likely to happen if the person is taught to
embrace and accommodate their differences as an autistic than if they're
taught to act like it went away.  Same as if you were spending most of
your energy focusing on your education or daily life goals, versus using
most of it trying to convince everybody that you're a different gender
than the one you are.

There is also the idea of "taking care of themselves" -- NTs are highly
interdependent as well, it's just that because the way you rely on one
another is what you're used to seeing everywhere, and therefore you only
notice when it's an autistic or disabled person's way of relying on
others.  We're also independent in different ways, but unfortunately
those are also often assumed to be pathological rather than just different.

I hope you don't take it the wrong way, but is it
anyway if you can find out if your boyfriend was
immature/developmentally delayed at an early age?
Again, my purpose is not to get his personal details
but just to see what the future might hold for my son.

Your boyfriend's example is certainly very
encouraging. Thank you for answering.

--- BreezingIt@... wrote:

> My boyfriend is ASD, he went to college.  He has a
> job, and he is very
> smart.  The only thing holding him back is himself.
>
> I haven't figured out if he is just so
> "non-assertive" that he won't  speak
> up for himself.  Or, if he is so afraid of "change"
> that he won't  speak up for
> himself.
>
> He COULD have a good job, but he chooses a mediocre
> one instead, because
> it's what he is "used to".  And, although he works
> very hard, often 10-hour
> days, and is very dedicated.....he is afraid to ask
> for a raise.
>
> And, the employers take advantage, I think.
> Because, they don't  offer it
> either.
>
> Judy
>
>
> [Non-text portions of this message have been
> removed]
>
>




__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
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On Wed, 2005-09-28 at 16:57 -0700, Shannon Terra wrote:
> I do not believe "developmental delay" always == "retarded". Although

Developmental delay is quite orthogonal to mental retardation.  A
developmental delay is a failure to meet certain "milestones" in regards
to certain aspects of development.  These are usually things having to
do with various aspects of social development.

For example, someone with William's Syndrome may meet the developmental
milestones even earlier than typical, but have a very low "IQ".

Dave

>>thoracic outlet syndrome,

>"Pain in the neck"?  ;)
>Exercise, injury, congenital anomaly, pregnancy, ...

Not unless I've been pregnant for the last couple of years ;-)

I'm talking about things that are less than obvious but also have a possible
connection.  For instance, when one part of the body is inflammed, it greatly
increases the chance that another spot along the same pathway will get
inflammed. Thus TOS and CTS (as well as cubital tunnel syndrome) often happen in
the same person.  It makes perfect sense, but I had to dig through the only
solid article I could find on TOS to find out anything about this (and other
things that made perfect sense once I read them).

I don't think that that all diseases have one cause.  I do think that this stuff
is possibly more interrelated that most people realize.  The problem is that
medical practioners are so specialize, they have a problem seeing beyond they're
specialty.  And then, once I got an offical diagnosis for TOS (I had received
multiple guesses about what it was previously), I got sent back to my general
practicioner.  Because I had been researching the subject recently, I knew more
off-hand than she did (and I'm paying for..what was it again?).

>That might be true for *some* autistics.  But most certainly not all.
By definition I'm autistic (AS/HFA).  Yet I've no health problems out
of the ordinary for my, um, considerable age.  The same is true of the few
other Asperger(s) I know personally.>

It seems to be true from the ones I know personally, granted I don't know a lot
of them.

Generally, what I was trying to get at (and I'm sure you're already aware) is
that if we assume that AS is genetic, then perhaps the same genes are linked to
certain physical parts that may or may not cause problems, depending exactly how
it is expressed.  But then there are other things to take into account. For
example, I was born with a hole in my heart.  I had less oxygen flowing through
me for the first 2 and 1/2 years of my life.  Did this cause an anomoly in my
brain, exagerating a latent tendency toward AS???

I wonder, if there is a connect between AS and health, if better medical
technology is in part of the reason for the apperant rise in austim.  I know if
I was born a century ago, even if I had managed to make it to adulthood, I would
never had been able to have children (I'm not having them anyway, but that's by
choice).  When I went looking for info on leaky gut syndrome, I ran across a
bunch of stuff hoping that this was a way to "cure" AS.  Screw the cure, I just
want to be healthy.  In Austin, TX, some people have bumperstickers that say
"Keep Austin Weird".  Maybe we should have some that say "Keep Autism Weird". 
Hey, it could work.

-Marcie


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