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Autobiographies

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Tom Brock

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Jan 21, 1994, 12:44:02 AM1/21/94
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I think it would be great if someone would collect and publish a set
of autobiographies by Autistic people. You could probably even make
money on it. Whoever commented on Temple being so open to being
picked over by the interviewer for The New Yorker really hit a note
with me. Thank you Temple for all the insight. Lets encourage others
with different experiences to tell their stories. I want to someday
relate to what is happenng to my 4 year old autistic daughter and
hopefully share feelings directly with her. Hearing what others
have to say will hopefully prepare me if the opportunity (when) presents
itself. In the mean time I rejoice at the happiness she finds and give
her every opportunity to share it with Mom & Dad. We sit around and
second guess what she is doing/thinking. I'm sure we will get a laugh
when she tells uus whhat was really going on.

Tom Brock :)

Stephen Drake

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Jan 20, 1994, 10:10:55 PM1/20/94
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On Fri, 21 Jan 1994 01:44:02 -0400 Tom Brock said:
>I think it would be great if someone would collect and publish a set
>of autobiographies by Autistic people. You could probably even make
>money on it. Whoever commented on Temple being so open to being
>picked over by the interviewer for The New Yorker really hit a note

Who would it be that would make the money? The authors of the
autobiographies or the person who collected them? Considering that
most of the HFA adults I know live in poverty, it would be nice to
think that they would earn the lion's share of royalties.

>with me. Thank you Temple for all the insight. Lets encourage others
>with different experiences to tell their stories. I want to someday

Others *have* been telling their stories. People don't always want
to hear what is said, though. That has become apparent on more than one
occasion on this list, when Autistic subscribers expressed opinions
contrary to those of some of the parents or professionals.

If you *do* want to read more, try becoming a member of Autism Network
International, whose newsletter features articles by autistic
people. However, a lot of what is written by individuals might
be considered frivolous by people looking for clinical treatises on
what autism is. Autistic writers celebrate their differences, often
using humor to speak out against a world that lends little support or
understanding.

>relate to what is happenng to my 4 year old autistic daughter and
>hopefully share feelings directly with her. Hearing what others
>have to say will hopefully prepare me if the opportunity (when) presents
>itself. In the mean time I rejoice at the happiness she finds and give
>her every opportunity to share it with Mom & Dad. We sit around and
>second guess what she is doing/thinking. I'm sure we will get a laugh
>when she tells uus whhat was really going on.

I hope you're correct in what your response will be. More typical reactions
are to ask individuals to be more tolerant or more serious when sharing
the world as it is experienced when your brain is wired differently than
the standard model.
>
Steve

Jim Sinclair

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Jan 22, 1994, 10:49:09 PM1/22/94
to
On Fri, 21 Jan 1994 14:10:55 LCL Stephen Drake said:
>On Fri, 21 Jan 1994 01:44:02 -0400 Tom Brock said:
>>with me. Thank you Temple for all the insight. Lets encourage others
>>with different experiences to tell their stories. I want to someday
>
>Others *have* been telling their stories. People don't always want
>to hear what is said, though. That has become apparent on more than one
>occasion on this list, when Autistic subscribers expressed opinions
>contrary to those of some of the parents or professionals.

[...]

>However, a lot of what is written by individuals might
>be considered frivolous by people looking for clinical treatises on
>what autism is. Autistic writers celebrate their differences, often
>using humor to speak out against a world that lends little support or
>understanding.
>
>>relate to what is happenng to my 4 year old autistic daughter and
>>hopefully share feelings directly with her. Hearing what others
>>have to say will hopefully prepare me if the opportunity (when) presents
>>itself. In the mean time I rejoice at the happiness she finds and give
>>her every opportunity to share it with Mom & Dad. We sit around and
>>second guess what she is doing/thinking. I'm sure we will get a laugh
>>when she tells uus whhat was really going on.
>
>I hope you're correct in what your response will be. More typical reactions
>are to ask individuals to be more tolerant or more serious when sharing
>the world as it is experienced when your brain is wired differently than
>the standard model.

True. I've come to the conclusion that this list is definitely *not* an
autistic-friendly forum. Autistics and cousins are not welcome to
communicate with each other here. We're expected to speak only when spoken
to by neurologically typical people, and only for the purpose of providing
informative data for others' purposes, like self-narrating zoo exhibits.
This is a place for discussion of ways to make us other than what we are,
and about how wonderful people think it would be to create a world in which
we don't exist at all--a world in which people like us can be "spared" the
opportunity to be alive. To lighten things up a little and add a more
personal touch, it's also a place for endless and interminable conversations
about vitamin supplements and bizarre diets. But it's certainly not a place
where autistic communication is considered appropriate.

JS

Dana Mulvany

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Jan 23, 1994, 12:20:27 PM1/23/94
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On Sat, 22 Jan 1994 21:49:09 CST Jim Sinclair said:
>On Fri, 21 Jan 1994 14:10:55 LCL Stephen Drake said:
>>On Fri, 21 Jan 1994 01:44:02 -0400 Tom Brock said:
>>>with me. Thank you Temple for all the insight. Lets encourage others
>>>with different experiences to tell their stories. I want to someday
>>
>>Others *have* been telling their stories. People don't always want
>>to hear what is said, though. That has become apparent on more than one
>>occasion on this list, when Autistic subscribers expressed opinions
>>contrary to those of some of the parents or professionals.
>
>[...]
>
>>However, a lot of what is written by individuals might
>>be considered frivolous by people looking for clinical treatises on
>>what autism is. Autistic writers celebrate their differences, often
>>using humor to speak out against a world that lends little support or
>>understanding.
>>
>
>True. I've come to the conclusion that this list is definitely *not* an
>autistic-friendly forum. Autistics and cousins are not welcome to
>communicate with each other here. We're expected to speak only when spoken
>to by neurologically typical people, and only for the purpose of providing
>informative data for others' purposes, like self-narrating zoo exhibits.
>This is a place for discussion of ways to make us other than what we are,
>and about how wonderful people think it would be to create a world in which
>we don't exist at all--a world in which people like us can be "spared" the
>opportunity to be alive. To lighten things up a little and add a more
>personal touch, it's also a place for endless and interminable conversations
>about vitamin supplements and bizarre diets. But it's certainly not a place
>where autistic communication is considered appropriate.

Jim, I'm fairly new to this list and wanted to encourage you to continue to
honor experiences with autism.

I'm a social worker who grew up with a significant hearing loss and was
misdiagnosed as being aphasic (a language disorder) when I was 3 1/2 years
old or so. (After three months in a special school, the teacher told my
parents I was just hard of hearing, not aphasic.) More relevant to autism,
though, is my personal experience growing up with an unusual hearing loss that
a lot of people don't understand, and consequently facing a lot of ignorance,
insensitivity, stigmatization, and negative assumptions.

Paul Longmore, a historian who himself has a disability, once said something
like "The greatest handicap of having a disability is not the disability itself
but people's attitudes towards it." Attitudinal barriers can lead to far
more misery for people with disabilities than their disability does.

By the way, I once met a HFA student with extra-sensitive hearing and the
ability to discern the individual dots that make up photographs. He could
hear the click in a phone before it actually rang and would pick it up,
baffling other people who had no idea such a click existed. He wasn't always
able to have such good sight, but something changed when he was in his late
teens and he was able to manipulate his ability to see things up close. He
was extremely articulate and bright---a real pleasure to talk with!

Here's where I'm going to get into a little scientific discussion---I wonder
about the plasticity of the brain and the ability to divert mental resources
to enhancing the use of certain senses. I found it fascinating that he
could change his ability to see extremely fine details. I wonder if he was
able to harness the power of his brain in a way that most of us are not open
to doing by our adherence to traditional ways of thinking. What if many
people with autism initially feel out of control with their cognitive
processes and latch onto repetitive behaviors as a way of experiencing some
stability? If we understood more about how to help them have more control,
they might be happier---or would we ruin the quality of their life by trying
to change them?

Hope this doesn't make you feel like a guinea pig, Jim. I haven't seen
examples of "autistic communication" here as far as I know and don't know that
much about the backgrounds of people on this list. Are there archives
available?

Dana Mulvany, MSW, LCSW
DMUL...@SJSUVM1.SJSU.EDU

s...@vipunen.hut.fi

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Jan 23, 1994, 3:56:46 PM1/23/94
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It is true that many of us have no way of really understanding
people with autism. However, as parents you should realize
that we may have inherited some autistic characteristics. At
least so says my wife of me.

So I certainly invite autistic comments in this list.

It is true that many of us try to change our offsprings. But
this is necessary because otherwise they cannot survive this
hard world. I mean this in life-and-death sense. I have some
experience.

SeppoJ

Carolyn Baird

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Jan 24, 1994, 7:49:21 AM1/24/94
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> True. I've come to the conclusion that this list is definitely *not* an
> autistic-friendly forum. Autistics and cousins are not welcome to
> communicate with each other here. We're expected to speak only when spoken
> to by neurologically typical people, and only for the purpose of providing
> informative data for others' purposes, like self-narrating zoo exhibits.

I represent one of the smallest minorities on this list - a HFA who is also
a parent of HFA children. As far as I know there is just Gershon and me in
this category (if there are any others out there please let me know). As
a parent I understand that the majority of people joining this list are
primarily seeking information and/or support and I welcome being able to
help in any way I can, but when people start assuming that this is the
sole aim of this forum; that the only posts there should be are the ones
that they dictate should appear because they suit their particular needs
then, like Jim, I must object and stand up for my rights as a HFA.

I have quite often shared Jim's present feelings towards this list and
*that* is the reason for my prolonged absences - I wasn't busy, I wasn't
otherwise occupied, I was just plain fed up and sick and tired of banging
my head against a brick wall trying to make others understand that having an
autistic child is not a tragedy, in fact, to my way of thinking it's no
better or worse than having any other child.... it's in the luck of the
draw. Most children at some time in their lives become a terrible burden
on their parents. It may occur when they're infants or at any stage before
or after reaching adulthood, but sooner or later *every* parent will wonder
what did they do to deserve a child like this. It's simple to understand -
having the 'perfect' child is a myth. For this reason, I don't feel sorry
for the parents of autistic children or anyone who has a diagnosable
condition, because, at least, they realise that their child is not 'perfect'
and can take action to help their child overcome some of his/her
difficulties. The group I do feel sorry for are the 'normal' children whose
parents are lulled into a sense of false security by believing that they
have 'perfectly normal' children. These children don't get the help and
attention they need to grow up to reach their full potential as human
beings. I can recognise some of these 'former perfectly normal children'
on this list. It's evident in the way that they write that they have never
resolved the conflicts of their childhood and in their unrealistic
expectations of others' behaviour..... demanding a 'perfect' world or in
this case a 'perfect' list, defining 'perfect' according to their own
narrow standards and inevitably bordering on hypocrisy.

> This is a place for discussion of ways to make us other than what we are,
> and about how wonderful people think it would be to create a world in which
> we don't exist at all--a world in which people like us can be "spared" the
> opportunity to be alive. To lighten things up a little and add a more
> personal touch, it's also a place for endless and interminable conversations
> about vitamin supplements and bizarre diets. But it's certainly not a place
> where autistic communication is considered appropriate.
>

> JS

In case any of you more enlightened parents on the list are wondering what
the hell this is all about. It's about a minority group objecting to lengthy
posts from us to other members of the group - posts which they interpret as
being personal and demanding that they be taken off the list and dealt with
in private email. However, they can't understand that, since they don't
find them interesting or informative, others might (and in fact, do), so if
we followed their wishes we would be surrendering our rights to write or
read what we want on this list. What would they object to next? Would it
be Gerry's discussion of the weather; Ray's updates on Christopher's
progress; any requests for anything not connected to autism - including
the regular query 'Is this listserv still working?'? :-) I look forward to
these sorts of interactions as confirmations that I am actually talking to
real people - they're the 'soul' of this list, autism is merely the
'backbone'. Or do these people not object to these posts only the ones from
HFAs? If that's the case then I declare they are fully fledged HYPOCRITES!

If anyone feels offended by anything I've said then TOUGH TITTIES! You will
never be as offended as you have made me with some of your posts.

Carolyn

Mark H. Wood

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Jan 24, 1994, 7:32:31 AM1/24/94
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Perhaps it is time for a second list, so that one may be devoted to sharing the
experience of autism, and another devoted to sharing the experience of trying
to understand autism and those who have it. That way, if you need one but not
the other, you can simply subscribe to whichever interests you. The two types
of postings would appear to be quite different enough to be considered separate
interest-groups.

The downside to the split would be that it would tend to increase the isolation
of the two groups. I hope that the trying-to-understand list wouldn't lose
much of the input from autistic networkers, because those who are trying to
understand, certainly need it. I can't say whether autistic readers need input
from the others -- would any of you care to comment?
--
Mark H. Wood, Lead Systems Programmer +1 317 274 0749 [@disclaimer@]
Internet: IMH...@INDYVAX.IUPUI.EDU BITNET: IMHW400@INDYVAX
I'm not politically incorrect; I'm conformity-challenged.

jbadner

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Jan 24, 1994, 9:36:56 AM1/24/94
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Jim Sinclair <GO...@UKANVM.BITNET> writes:

>On Fri, 21 Jan 1994 14:10:55 LCL Stephen Drake said:
>>Others *have* been telling their stories. People don't always want
>>to hear what is said, though. That has become apparent on more than one
>>occasion on this list, when Autistic subscribers expressed opinions
>>contrary to those of some of the parents or professionals.

[Much editing on my part]

>>I hope you're correct in what your response will be. More typical reactions
>>are to ask individuals to be more tolerant or more serious when sharing
>>the world as it is experienced when your brain is wired differently than
>>the standard model.

>True. I've come to the conclusion that this list is definitely *not* an
>autistic-friendly forum. Autistics and cousins are not welcome to
>communicate with each other here. We're expected to speak only when spoken
>to by neurologically typical people, and only for the purpose of providing
>informative data for others' purposes, like self-narrating zoo exhibits.

I think you're talking about a few very vocal disgruntled people. It
is not clear that most people on the list feel this way. There is no
way you can please everyone. I for one really enjoy the interaction
between autistics and cousins for both my personal pleasure and for
what it means for my niece's Abby's future possibilities for
socialization. Also, those of us who are abnormal and are comfortable
with this fact can educate just by being, those who because of our
culture believe one has to be normal in order to be happy and
successful. We can't change everyone's minds but just educating one
person is enough for me.

In other words, keep it up you two!

Judy

Dan M

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Jan 25, 1994, 9:36:35 AM1/25/94
to
I'd like to offer my support to Carolyn, Jim, Steve, etc. vis a vis
the long postings that (I am assuming) were criticised as not belonging
on this list. I am very glad to see them on the list (I'm guessing
these are the snoring discussions for example). First, if this is
what the autistic community on this list feels is appropriate then
by definition I think it is. After all, the name of the list is
AUTISM. Secondly, for selfish reasons, I enjoy these posts. I don't
participate in them because I don't have anything to add but I find
them interesting in terms of what they reveal about the differences
between how autistic and non-autistic people think and they have
given me much encouragement for my son Alex. Over and over we read
things about how autistics can't make personal connections or have
a sense of humor. These posts serve as proof that this is not
true. It makes us question the "truisms" about autism that we
often hear.

DM

Armin Deierling

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Jan 25, 1994, 12:06:30 PM1/25/94
to

I want to join your point of view a 100%.
You clearly stated what I thought when I read all those postings concerning
"autistic communication" on this list.

Besides for all the critics: When at times I don't want to read such
postings there is the key combination "Apple-D" on my Mac which means
"delete".
And I assume there is a similar mechanism on every computer...:-)

So again: Keep on communicating! I enjoy and LEARN....!!!

Armin in Germany

Jim Sinclair

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Jan 25, 1994, 11:35:05 PM1/25/94
to
On Mon, 24 Jan 1994 07:32:31 -0500 Mark H. Wood said:
>The downside to the split would be that it would tend to increase the isolation
>of the two groups. I hope that the trying-to-understand list wouldn't lose
>much of the input from autistic networkers, because those who are trying to
>understand, certainly need it. I can't say whether autistic readers need input
>from the others -- would any of you care to comment?

We *have* been commenting. We have been giving input to each other. That's
what's being declared unsuitable for the list.

JS

Jim Sinclair

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Jan 26, 1994, 1:27:12 AM1/26/94
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On Mon, 24 Jan 1994 14:36:56 GMT jbadner said:
>I think you're talking about a few very vocal disgruntled people. It
>is not clear that most people on the list feel this way. There is no
>way you can please everyone. I for one really enjoy the interaction
>between autistics and cousins for both my personal pleasure and for
>what it means for my niece's Abby's future possibilities for
>socialization. Also, those of us who are abnormal and are comfortable
>with this fact can educate just by being, those who because of our
>culture believe one has to be normal in order to be happy and
>successful. We can't change everyone's minds but just educating one
>person is enough for me.
>
>In other words, keep it up you two!

Thanks, but I think the rest of you may have to keep it up without me.
After I finish posting tonight, I'm leaning strongly toward unsubscribing.
But you'll carry on, won't you?

JS

Mark H. Wood

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Jan 26, 1994, 7:11:10 AM1/26/94
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In article <1994Jan24.073231.3345@ivax>, imh...@indyvax.iupui.edu (Mark H. Wood) writes:
[guff about spinning off a new list omitted]

I was a bit puzzled by the assertion that postings by autistics, couched in
their own style of thought, were frowned upon. Then on the way to work it hit
me: somebody has complained about the endless Snoring Discussion. Truth to
tell, I had myself considered making a gentle suggestion that this was a
private exchange which didn't need to be on the list. On reflection, though, it
seems also to be a valuable source of possible insight for those of use who
haven't the firsthand experience of such styles. (It is also interesting to
see how special this style *isn't*, at least to me.)

Anyway, such suggestions are typical in this situation, but the situation
itself is atypical, and I would no longer wish to discourage the posters'
continued exchanges. One might consider them a precious gift to the group; or
one can simply hit the next-message key and move on.

MO...@central.edu

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Jan 26, 1994, 10:37:02 AM1/26/94
to
>We *have* been commenting. We have been giving input to each other.
That's what's being declared unsuitable for the list.

JS
How many have "delcared it unsuitable"? If someone (one,two?) wrote
to you saying they did not like it, that is NOT THE ENTIRE LIST.
You are being unfair to many MOST? who do not feel that way.

Now, if you had been bombarded by as many people as Mr Thomas
and "the end of the world" message he sent, you would really
have a problem. ):

Again, my hope that you stay with us is expressed!
Gerry in Iowa

Jim Grunewald

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Jan 26, 1994, 3:16:50 PM1/26/94
to

I hope you change your mind. As I said in an earlier post, you and
others offer a valuable perspective. I don't know any more than
what I've read, so I can't judge other motivations. I speak from
a purely selfish motivation. The dialog that occurs on this news
group is worth a great deal to me and I'm sure others. Losing your
input would deminish it. If you feel you are being pushed out, then
we have a larger problem. If you do leave, let me thank you and I
hope to hear from you again.
--
------------------------------------------------------------------------------
|Jim Grunewald | |
|Speaking only | DYSLEXICS OF THE WORLD, UNTIE! |
|for himself. | |
------------------------------------------------------------------------------
| We'er all BOZOs on this bus. -Firesign Theater |
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