Re: How the Autism Community Radically Changed in the Past 15 Years

Re: How the Autism Community Radically Changed in the Past 15 Years

--- Rose Alford <omlick <at> yahoo.com> wrote:

> I am just curious about what other forums you have found out there
> these days.  

Nada.  Nothing is happening.

> I was kicked off the ME LIST years ago (well at least I
> stopped receiving the postings) because my email address changed and
> the moderator just could never get around to fix it for me.  

I could never figure out what the big deal was with the "Me List".

>   I have been totally out of touch though with the new goings on in
> the ABA world.  I am just too tired to care anymore about Autism
> treatment.  

Apparently you're not the only one.  The truth is these general
discussions went round and round for 15 years on the net and folks have
said everything they wanted to say.  With autism, experience seems to
be the only teacher.

> In other words I became apathetic.  Is the ABA push as
> strong as ever?  

You bet.  Now the behaviorists have a multi million dollar industry and
use it to organize the parents.  It's like feminism for crissakes. 
They even have a stranglehold in academic psychology thanks to all the
money they are making off us.  They're going to ride on the backs of
autistics until the parents have had enough.

> Did they ever duplicate the Lovaas experiment which
> had about a 47% cure ratio?  

Never.  Some studies found either no effect or even a negative effect. 
The studies that showed improvement showed very little improvement
among very few autistics.  It was obvious to anyone who has taken
experimental psych in college that the Lovass study was a garbage study
with too low a sample.  The whole thing was a scam to get the school
districts to fund it.  Most everyone in the know knew that but
rationalized that they had to get help some way.  Plus like I said, the
parents were misinformed and scared by FC rising and the behaviorists
were just the ticket to stop that.  The behaviorist's already a strong
foothold in autism and were looking to better their position.  FC could
have knocked them out of the picture.  Don't get me wrong, there are
some very real problems with how the official FC people were promoting
it, but those problems could have been rectified with more support.

> What are they saying now?  How are they
> going to afford the long term care costs of the more severely
> affected autistics like my son.?  

Well, that's one of the consequences of the parents going the early
intervention route.  Nothing has been or will be done to help the older
autistics.  In fact we have gone backward.  The institutions that have
been closed in favor of group homes had been getting better in
preceding decades and were actually doing a good job.  There's fewer or
no services in the group homes so now what we have is them being
"warehoused" in group homes.

I'm 60 years old and I fought most of my adult life for these guys. 
What has happened is a heartbreaker.  I don't know what to do.  I'm
sure many others feel the same way.  Let's hope they don't feel the way
I do when they are 60 years old.

Tom

>   Rose
>    
>    
>    
>   
> 
> Tom Smith <qim <at> yahoo.com> wrote:
>           Due to the lull on this list I started checking out the
> other autism
> forums. This list was the first major list outside of the usenet list
> "bit.listserv.autism" which then became the "St John's list". We were
> the first to be formed as an alternative at yahoogroups, then
> "eGroups". Many followed with niches in biomedical approaches, which
> took off like a rocket natch, but this group was the only general
> open
> discussion and is still now except for the aspie groups.
> 
> Having worked in the field for 25 years before I hit the net I had a
> general idea what was going on in the larger autism community and it
> was verified when I arrived on the net. But there was a large group
> of
> new and very unhappy parents starting in about '94 or '95 on the net
> who were tired of business as usual in the autism community and
> targeted the Autism Society of America (ASA). They wanted government
> help and didn't think ASA was doing enough to get it. Their best bet
> at getting that help was by advocating early intervention using ABA
> plus they absolutely hated the idea of Facilitated Communication (FC)
> which was on the rise at the time by the traditional autism
> advocates. 
> The behaviorists hated it too so they banded together with these
> disaffected parents (Lenny Shaffer and FEAT) and in 10 short years
> took
> over the autism community lock, stock and barrel. Out with the old
> and
> in with the new.
> 
> There's more details in all this but I wanted to know if anyone had
> anything to add or had a different perception of all this who
> witnessed
> it.
> 
> What's troubling about it is the tactics of these new parents. They
> mean business and that alone has transformed the autism community. 
> Before it was rather casual and "humanistic", but overly politically
> correct. These new parents are both politically correct and sort of
> fascistic. They organize in a way to shut out anyone who doesn't
> agree
> with them. I noticed it at first when I went to a FEAT meeting back
> in
> '96. At first they allowed us professionals and others besides the
> parents in but as soon as the pros and others started questioning
> what
> was going on, the science behind ABA etc., they shut everyone but the
> parents out. In my recent internet travels I see they are now
> organized by regions using internet forums and it's the ABA pros who
> own and run the lists and they shut out the competition by saying
> they
> are only "parent groups".
> 
> As the society goes, so goes the autism community...
> 
> Tom
> 
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Facilitated Communication Institute gets $500k for autism, speech research

http://media.www.dailyorange.com/media/storage/paper522/news/2008/04/28/News/Institute.Gets.500k.For.Autism.Speech.Research-3351879.shtml

Quote...

"Facilitated communication begins with psychical communication,
pointing at letters, words or typing. The hope is the person will move
to more advanced forms of communication without an aide or prop,
Chadwick said."

Hey Art, Chadwick said that FC starts with a "psychical communication".
 Does that reach muster?

Tom

Institute gets $500k for autism, speech research
Abram Brown

Issue date: 4/28/08 Section: News

The John P. Hussman Foundation, which supports research and training on
communication strategies for people with autism, announced April 16 it
would provide the Facilitated Communication Institute (FCI) of the
Syracuse University School of Education a half million dollar grant.

"It certainly strengthens our resource, for sure. So we're pretty
excited about it," said Marilyn Chadwick, the assistant director of the
Facilitated Communication Institute (FCI).

The $500,000 came straight to SU. John Hussman, the founder, director
and namesake of the foundation, contacted the FCI early last fall
without any prior requirements.

"He initiated the contact with us and said he was interested in giving
us some money," Chadwick said.

The FCI is headed by Douglas Biklen, dean of the School of Education.
The institute attempts to teach new methods of communication to both
families of those with disabilities and professionals who will work
with the families.

Facilitated communication begins with psychical communication, pointing
at letters, words or typing. The hope is the person will move to more
advanced forms of communication without an aide or prop, Chadwick said.

"The goal of facilitated communication is people becoming much less
dependent communicators," said Christine Ashby, a member of the FCI and
an associate professor in the School of Education.

Hussman has a personal connection to the work of the FCI. His son has
autism and makes use of facilitated communication, Chadwick explained.
A recent report issued by the Center for Disease Control and Prevention
showed that autism strikes one in 150 children in America.

Chadwick maintained that facilitated communication can be used to
combat more than autism.

"Our method itself supports a lot of disabilities," Chadwick said.

The grant will be used in three different ways. Chadwick will manage
the development of the program's clinical ability to work with families
and better develop those methods.

The money will also support research projects taking place both locally
and nationwide, which will be managed by Ashby.

One project will look at people who are communicating at an
increasingly independent level. Another will study the use of
facilitated communication in the post-high school level and in the
community at large.

The group will then analyze all of the research studies conducted on
facilitated communication to determine where facilitated communication
currently stands, Ashby said.

The goal of the research is "to keep looking at how people say what
they need to say," Ashby said.

With the projects being conducted across the nation, Ashby hopes to
build a network of those using facilitated communication. She is hoping
such a network will help facilitated communication become a more valid
method of interaction.

"We're just scratching the surface of what people with disabilities can
do," Ashby said.

The money will also be used to fund a documentary on their work.
Academy award-winning director, Gerardine Wurzburg, is set to create
the film.

Wurzburg has collaborated with Biklen in the past. He served as an
educational consultant on her Oscar-winning documentary "Educating
Peter" (1992) and co-produced the sequel "Graduating Peter" (2002).
Wurzburg was nominated for another Oscar in 2004 for Autism is a World,
a documentary about a woman uses facilitated communication.

"It is a continuation in many ways of the work we've already done,"
Wurzburg said.

Right now, Wurzburg is compiling the stories of the families the FCI
will affect. She says she hopes to give autism a new face, focusing on
adults with autism and how they are communicating on a broad scale.

"It's very much about the fact that people with autism are often to be
perceived to be intelligent or not have competence," Wurzburg said.
"I'm very excited. This is very much my lifework."

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Reminder: Wendy Lawson will be online to answer your questions tomorrow (Tuesday, May 6, 2008)

World-famous autistic author Wendy Lawson is online right now to answer your questions

Study Links Children’s Autism to Parents’ Mental Health

I don't usually post studies but this one has a pretty big sample and
clear criteria.  It should be noted that being alittle different isn't
necessarily bad for society or families.  We in autism should know
that.
Chances are that if intelligence and professions were part of the
criteria that the parents would probably be at the high end there.  In
fact studies have shown this.  The important thing here is the genetic
connection.

Tom

http://www.findingdulcinea.com/news/health/May-June-08/Study-Links-Children-s-Autism-to-Parents--Mental-Health.html

The new study showed an especially high risk factor for mothers and
fathers diagnosed with schizophrenia, for whom the chances of having a
child with autism doubled.

“The link between parental disorders and a child’s autism was present
regardless of whether the parent was diagnosed before or after the
child,” the Wall Street Journal Health Blog reported, “suggesting the
association may be genetic, not a matter of a parent getting depressed
over a child’s diagnosis.”

Researchers also found that mothers of autistic children were more
likely to have depression and personality disorders than were the
fathers.

In the study, researchers from the University of North Carolina and the
Karolinska Institute in Stockholm, Sweden analyzed health records of
1,327 autistic children born between 1977 and 2003, along with those of
the childrenÂ’s parents, then compared the data with information from
31,000 nonautistic children.

About 1 in every 150 U.S. children is autistic. A growing number of
researchers believe that both genes and environmental factors
contribute to autism, according to Reuters.

A 2007 study also suggested a genetic basis for autism, finding that
“siblings of children with the disorder are at high risk for some of
the same social functioning deficits as their brothers or sisters.”

Another theory links childhood vaccinations to higher rates of autism,
leading some parents to forego standard immunizations for their
children. But many public health officials say vaccines are safe, and
withholding them has contributed to a resurgence of preventable
illnesses like measles, mumps and pertussis.

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Extended for second day: online seminar with world-famous autistic author Wendy Lawson, online right now to answer your questions

Fwd: Re: [AutAdvo] Autreat info

Below is a post from Jim Sinclair of "Don't Mourn for Us" fame.  He's
an earnest aspie self advocate who leads up "AUTREAT".  The discussion
on this thread revolved around my theory of autism as symptomatic of
genius, what Sinclair demeaningly calls "aspie supremacy" because many
aspie's endorse it as well.  He's saying here that he won't allow it
to be discussed at AUTREAT, whatever that is.

Anyway, the visit to "AutAdvo" this time was VERY unpleasant.  If they
confined their advocacy to aspergers it wouldn't be so bad because
most of them are aspie's, but when they move into severe autism they
become like everyone else...clueless.  Severe autism should at least
be contained to those clueless that at least have some experience with
them.

Tom

--- In AutAdvo <at> yahoogroups.com, "Jim Sinclair" <jisincla <at> ...> wrote:

Oh, now I see what I unsuspectingly stepped into. It's a troll.

Back to what I originally intended to do in this thread: Larry, and
anyone else who's concerned about Autreat's standards, be assured that
no proposals have ever been accepted, nor (as long as I have any say
in the matter) will ever be accepted, that promote aspie supremacy.
And if any presenter gets a proposal accepted and then proceeds to
spout aspie supremacy rhetoric during the actual presentation, xe will
be immediately and publicly called to task about it.

J8

--- End forwarded message ---

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

Re: Fwd: Re: [AutAdvo] Autreat info

Wow, Tom, way to completely misrepresent things.

You came in there spouting your anti-feminist propaganda, telling 
everyone that they don't know Aspie from Autie (when Amanda, at least, 
is very definitely autistic, and I would consider her to be among the 
so-called "severe" autistic people I've met), and claiming that all 
autistic people are genii.

The reality of the discussion was that we were talking about Aspergia, 
the web community that puts forth the somewhat ridiculous notion that 
people with Asperger Syndrome are "the next step in evolution", so all 
Aspies are better than anyone else.  We were talking about how that kind 
of separation does nobody any good.  We were talking about how what 
we're working for in AutAdvo is proper respect for autistic people, 
which includes appropriate, needs-based services and the recognition 
that autistic people are just that: people.

I'm with most people on AutAdvo, in that I don't think there should be 
any kind of division made between "levels" or "severity" of autism.  
Since it affects everyone differently, there's no real way to 
distinguish between "severities" or "functioning levels".

And I'm here (and stay here) because you really do need someone to beat 
you up-side the head when you're acting like a moron.  ;)

-Janna

Tom Smith wrote:
> Below is a post from Jim Sinclair of "Don't Mourn for Us" fame.  He's
> an earnest aspie self advocate who leads up "AUTREAT".  The discussion
> on this thread revolved around my theory of autism as symptomatic of
> genius, what Sinclair demeaningly calls "aspie supremacy" because many
> aspie's endorse it as well.  He's saying here that he won't allow it
> to be discussed at AUTREAT, whatever that is.
>
> Anyway, the visit to "AutAdvo" this time was VERY unpleasant.  If they
> confined their advocacy to aspergers it wouldn't be so bad because
> most of them are aspie's, but when they move into severe autism they
> become like everyone else...clueless.  Severe autism should at least
> be contained to those clueless that at least have some experience with
> them.
>
> Tom
>
> --- In AutAdvo <at> yahoogroups.com, "Jim Sinclair" <jisincla <at> ...> wrote:
>
> Oh, now I see what I unsuspectingly stepped into. It's a troll.
>
> Back to what I originally intended to do in this thread: Larry, and
> anyone else who's concerned about Autreat's standards, be assured that
> no proposals have ever been accepted, nor (as long as I have any say
> in the matter) will ever be accepted, that promote aspie supremacy.
> And if any presenter gets a proposal accepted and then proceeds to
> spout aspie supremacy rhetoric during the actual presentation, xe will
> be immediately and publicly called to task about it.
>
> J8
>
>   

--

-- 
http://thehoskincentre.com

"Nobody realizes that some people expend tremendous energy merely to be normal." - Albert Camus
"I want to remake the world; anything less is not worth the trouble." - Karen Cushman

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

Fwd: Re: [AutAdvo] Autreat info

Janna, just like you have a problem with the "severity" issue to
which Tom Smith keeps referring, separating the aspies from the
auties, I have a problem with those who want to separate the respect
due to someone from neuro-typical to autistic. 

I cannot see, personally, those within the autistic spectrum just
seeking respect just from those outside the spectrum, alone, but
from everyone--regardless of designation by design or otherwise.
In other words, as a person on the spectrum, myself, I seek respect
from others within the autistic spectrum (as well as those outside),
but often have got nothing but contempt and humilitation from others
within the spectrum because I would differ on perspective, viewpoint,
or opinion on some issue.

Earlier this year, I questioned the basis of science on a blog
that Muchelle Dawson started, and, at one point, got lambasted
for questioning the tenets of science--something that Michelle
will, apparently, not tolerated, whatsoever. All I ask is for
respect in being able to speak my own mind, without others telling
me that I must remomve myself from them (whether they be individuals
or groups), and that respect is given for differences of perspective;
that no one (as a human) knows what is "absolute" above everyone else,
no matter how much statistical evidence or "proof" is given.

A few years ago, when I joined a group called "AS and Proud of it",
I was given the boot for just asking where, in general terms, (such
as state or nation) the persons posting on the list were from. The
moderator of the group called me an "online stalker", and banned me 
from the group, even notifying my ISP about the ban, which was
completely disrespectful of that moderator, towards a person on
the spectrum.

Will we aspies, as individual and unique as we are, ever get the 
respect we deserve, on a person-to-person basis, or is that just 
a pipe dream?

-Brian

--- In autismlist <at> yahoogroups.com, Janna Hoskin <janna <at> ...> wrote:
>
> Wow, Tom, way to completely misrepresent things.
> 
> You came in there spouting your anti-feminist propaganda, telling 
> everyone that they don't know Aspie from Autie (when Amanda, at 
least, 
> is very definitely autistic, and I would consider her to be among 
the 
> so-called "severe" autistic people I've met), and claiming that all 
> autistic people are genii.
> 
> The reality of the discussion was that we were talking about 
Aspergia, 
> the web community that puts forth the somewhat ridiculous notion 
that 
> people with Asperger Syndrome are "the next step in evolution", so 
all 
> Aspies are better than anyone else.  We were talking about how that 
kind 
> of separation does nobody any good.  We were talking about how what 
> we're working for in AutAdvo is proper respect for autistic people, 
> which includes appropriate, needs-based services and the 
recognition 
> that autistic people are just that: people.
> 
> I'm with most people on AutAdvo, in that I don't think there should 
be 
> any kind of division made between "levels" or "severity" of 
autism.  
> Since it affects everyone differently, there's no real way to 
> distinguish between "severities" or "functioning levels".
> 
> And I'm here (and stay here) because you really do need someone to 
beat 
> you up-side the head when you're acting like a moron.  ;)
> 
> -Janna
> 

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