Re: Digest Number 1280, correction....

[Guest guest]

I used to be on 's other list, the one that deals

with advocacy. I left it because it is dominated by intolerant idealogues.

It has been so long since i was on it that I forgot that it is a separate

list from Treehouse. If anyone wants to crosspost my previous post to that

list and invite anyone from there to discuss my comments via email

privately, you have my permission.

Jerry Newport

[Guest guest]

> I used to be on 's other list, the one that deals

> with advocacy. I left it because it is dominated by intolerant

> idealogues. It has been so long since i was on it that I forgot that

> it is a separate list from Treehouse. If anyone wants to crosspost my

> previous post to that list and invite anyone from there to discuss my

> comments via email privately, you have my permission.

Done.

[Guest guest]

Gerald Newport wrote:

> I used to be on 's other list, the one that deals with advocacy.

> I left it because it is dominated by intolerant idealogues.

Was. In your opinion. You can't know by whom it " is " dominated unless

you're on it now; you can only know how it was while you were on it.

And certainly, there are a lot of people that do not think it is (or

ever has been) dominated by intolerant idealogues; that is your opinion,

but you have stated it like it was a fact.

> It has

> been so long since i was on it that I forgot that it is a separate

> list from Treehouse. If anyone wants to crosspost my previous post to

> that list and invite anyone from there to discuss my comments via

> email privately, you have my permission.

I created the AutAdvo list to be a companion to my web site, where the

curebie/pro-ABA mentality was not held to be normative or helpful, and

where the pro-autistic view was advocated. That is precisely what it

has become. If you consider that to be " dominiated by intolerant

ideologues, " so be it, but the list's raison d'etre was to positively

discuss autism as something other than a terrible disease to be cured.

It is doing quite well in that regard, and even though I have not been

as active a participant on that list (or this one) as I had been in

years prior, I am still pleased with how it has turned out.

Complaining that the AutAdvo list is " dominated by intolerant

ideologues " would be like going to a Democrat list and then complaining

that it is dominated by liberals. It's mostly the same people that are

on here, though, that are doing the domination on that list, so if that

list is dominated by intolerant ideologues, then so is this one.

Alternately, perhaps you were not actually on long enough to know

whether it actually is dominated by anyone. I am wondering if perhaps

you meant ideologues on the other side. I can't recall what discussions

may have been taking place when you were on.

When you signed off, you said that you had enough of NT parents, and

that you had to be paid to talk to them. Fortunately, there are people

that are interested in working on the problem of abuse of autistics for

free.

[Guest guest]

>

> > I used to be on 's other list, the one that deals with

advocacy.

> > I left it because it is dominated by intolerant idealogues.

>

> Was. In your opinion. You can't know by whom it " is " dominated

unless

> you're on it now; you can only know how it was while you were on

it.

> And certainly, there are a lot of people that do not think it is

(or

> ever has been) dominated by intolerant idealogues; that is your

opinion,

> but you have stated it like it was a fact.

>

it is a fact. Here is the latest proof. Not one of those people

has responded to my invitation to discuss my comments on the NYT

article. Not one.

As for my preferring to be paid to speak to NTs, I answer a ton

more email than you for free, NTs and auties. If I get paid and you

don't ( unless I arrange the exceptions as I did in the past ) maybe

that reflects the relative credibility and quality of our messages.

I think it does, more than you will ever admit. The only reason for

that is that you don't take the effort to proofread and refine your

writing that I do.

BTW, , if you wonder if any of my comments about the

minority who collect SSI and don't deserve it were aimed at you, they

weren't. I know you personally, not just as a e-mail person. I think

you are autistic, not AS and entitled to everything you get and more.

How you ever slipped past the system as a kid is hard to believe. I

guess you are too smart for the " Experts " to admit that they goofed

up and should have pegged as an autie years ago.

Besides, as I once suggested to you, your volunteer work would

easilly qualify you for a stipend from VISTA.

Jerry Newport

[Guest guest]

Gerald Newport wrote:

> it is a fact. Here is the latest proof. Not one of those people has

> responded to my invitation to discuss my comments on the NYT article.

> Not one.

That is proof to you?

I won't discuss Lenny Schafer's moronic comments with him either. He's

too much of a crackpot to waste my time on. I am not saying you are a

crackpot... I am saying that you are reading more into people's lack of

response to your offer than what is there. People choosing not to

debate with you does not indicate that they are intolerant idealogues.

It indicates that they do not want to debate with you. If you were on

AutAdvo, where the comments apparently appeared in a spontaneous

discussion, perhaps they would have.

In terms of why people may not want to debate you: You do tend to hurl

insults at people that disagree with you (you often call them " reality

checks, " but they are insults), to resort to proof surrogates (things

like " I have been at this for a lot longer than you, and I know things

you don't, " without ever stating what those things are), and to bow out

of debates with ( " ok, I am tired of debating this, I have better things

to do, so you can have the last word " when things get tough.

Look at what you wrote about me when I dared to disagree with you and

agree with some months ago-- you accused me of being incapable of

being a true friend, you threatened to expose the " real me, " not some

" internet fantasy " (which was nonsense, as what I write is as genuine as

anything you will find on the net), and otherwise piled on the insults.

I was not insulting to you in the letter to which you were responding.

You initiated that barrage of insults, not I. Additionally, I was not

the only person you slung mud at that week. In addition to two list

members besides me, you took swipes at many others that are within the

autistic community (and who are not here to defend themselves). Nor has

this list been the only place where this has been a pattern. I don't

blame people for not wanting to debate you.

> As for my preferring to be paid to speak to NTs, I answer a ton more

> email than you for free, NTs and auties.

How do you know this? Again, you state this as fact, when you have *no*

idea how much email I get. My email address is up there on my web site,

available to anyone who wants to visit my site, or get it from a

friend. As far as I know, you don't give yours out to just anyone. The

last I heard (this may have changed since your move), you would not even

check your email at home.

I have my net connection active for every waking hour, and since I have

a web site with my sometimes controversial, sometimes inflammatory (to

curebies) articles up 24 hours a day (with about a thousand visitors per

day-- nothing like the sites that some others on this list have, but

still a lot for a site that contains content that is ALL written by one

individual), I get a lot of email. I cannot imagine being able to spend

all of the time responding that I do if I had to do it in a library.

I put a lot of thought into my replies, and it is not uncommon for me to

spend several hours on ONE email (I've got over an hour into this one,

and as I write this, I am on my second reading/edit). You certainly

have a greater command of resources that are out there; when I need to

direct someone toward a diagnostician in Atlanta or something like that,

I email you, because I can't help with things like that. Maybe you hit

" reply " more than I do (although there is no way to know this), but in

terms of the amount of time spent, and the amount of thought put into

email on a daily basis, I find it hard to believe that you can have me

beat. I take my self-assumed responsibility of helping parents and

fellow autistics seriously.

By making my articles available to everyone, and by writing emails to

people that email me, I have helped quite a number of " curebies " see

that they don't need to wage a war to " cure autism " at any cost to help

their child progress and learn. This is by their own emails to me. The

internet is the best vehicle for someone like me to reach the broad

audience of parents-- virtually every parent of an autistic child has

internet access, and most of them do research on the internet.

> If I get paid and you don't

> ( unless I arrange the exceptions as I did in the past )

I spoke at Carnegie-Mellon University in Pittsburgh as a result of my

web articles, and the people that saw my presentation gave the

proverbial rave reviews. People are starting to realize how good I am <g>

I could be marketing myself as being available to speak (I get a lot of

visitors to my site; all it would take is a little banner that says I am

available), and I could be writing a book (I started to, but I just

don't want to write stuff that is not accessible to everyone for free,

not to mention how hard it is for me to overcome inertia), but I don't

care about making money. I just want to help autistics.

> maybe that

> reflects the relative credibility and quality of our messages.

Maybe it reflects that one of us happened to be in the right place in

the right time when 60 Minutes happened to pay a visit. I do not

begrudge you that; it was a great thing (although a mixed blessing).

That gave you a level of fame that allowed you to get your foot in the

door, and fame (in this NT world) means credibility to a lot of NTs.

That gives you instant credibility, in the eyes of many NTs, no matter

*how* good or bad your message is. I think you have fallen into the

trap of thinking that fame equals credibility. Lenny Schafer is famous

within the autism community; is he credible? Dr. Bradstreet is famous

within the autism community too. Do you see what I am saying? Fame

means fame, credibility means credibility, quality means quality, and

there is not necessarily any overlap.

I have life experiences that are real, and even though you have been

active in the autistic community longer than I, you cannot deny that I

have thrown myself into it and learned a lot. I have read and

critically analyzed a lot of stuff, and I have communicated with many

others that have done so as well. Although I am wrong at times (as are

all people), above all, I strive for truth, and that is reflected in my

message.

If you could see the quantity and quality of feedback I get from

visitors to my site, I think you might be surprised. I have had a lot

of NT moms tell me that I have done the best job of putting the autistic

experience into words that they have seen to date. I had one woman tell

me that I did a better job of this even than Temple Grandin. As I

consider her to be incredibly good at her autism writing (I like her

dry, factual style), and unquestionably credible, I consider this to be

a great compliment. When I am summarily trashed by people like Kit

Weintraub, I consider this also to be a great compliment-- if I was not

pissing her off, I'm not doing it right.

I offer more readily-accessible content for free on my site than you do

too. There is enough there to be a book, and I have not charged a cent

for any of it. I don't really want to be paid for advocacy; if I do, I

might be in the position of having to rely on that position for my

sustenance, and that means tailoring the message to the demands of

economic viability, not what I want to say. I do what I do because I

want to make a difference. You once said on the list that you were

going to denounce Soma's abusive treatment of her son Tito, but when it

came down to it, you did not want to bite the hand that feeds you. I do

not want economic interest to ever eclipse the message. I want the

truth to be my guide, not what pays well.

> I

> think it does, more than you will ever admit. The only reason for

> that is that you don't take the effort to proofread and refine your

> writing that I do.

Please see the above paragraphs for an alternate hypothesis as to the

reason.

> BTW, , if you wonder if any of my comments about the minority

> who collect SSI and don't deserve it were aimed at you, they weren't.

They were inappropriate regardless. It is not for you to decide, and

you cannot possibly know all of the circumstances in any one person's

life that led to receiving SSI.

> I know you personally, not just as a e-mail person. I think you are

> autistic, not AS and entitled to everything you get and more.

I am genuinely surprised.

> How you

> ever slipped past the system as a kid is hard to believe. I guess you

> are too smart for the " Experts " to admit that they goofed up and

> should have pegged as an autie years ago.

Well, I have dealt with this on my site. I was not discovered before I

reached school age because they do not send doctors door-to-door to

evaluate kids, and my mother was a one-in-a-million gem that did not see

my bizarre behaviors (in NT terms) as reason for concern. She accepted

me as I was. When I showed that I liked to rock for much of the day,

she bought me a little rocking chair. When I drove her to distraction

spinning (sometimes breakable) things, she gave me things that were more

appropriate for a child to spin.

When my mother attempted to teach me to stop flapping and to walk more

normally, she didn't do it with the " this is abnormal, so it is wrong "

attitude that too many NT parents have. She did it because she knew

that being abnormal would lead to bullying. She never forced the issue,

though, which was good (she did teach me to walk normally, but she never

got rid of the flapping). As for my obsessive interests and lack of

desire for friends in childhood, she never worried. If I had some of

the parents I have seen, she would have had me in play dates and social

groups to try to force me to have friends, at the very least. Hell,

look at Kit Weintraub-- she says that she's bothered by the fact that

her kid wants to be Mickey Mouse and not Frodo for Halloween. She

certainly would not have liked my obsessions with anything but the

NT-approved obsession with socializing.

I often wonder if my current functioning level is not directly related

to my *not* having been stressed by being forced to inhibit natural

behaviors and coping mechanisms. I may have been more obviously

autistic if she had me in all sorts of therapies, behavioral

modification programs, social skills programs, play programs, chelation

programs, et cetera, from the point that I failed to speak on time

forward. While my mom's approach certainly does not fit all autistic

kids, I find it hard to imagine that she could do much better,

especially considering the time. She capitalized on my strengths and

did not spend so much time fretting about how to stamp out my abnormalities.

As for the teachers in school not catching it... well, I think my

intelligence masked it. Recall that I went to school in the 70s and

80s, when " autism " meant nonverbal, retarded, and utterly hopeless.

There was much less awareness of the *existence* of autism then too.

> Besides, as I once suggested to you, your volunteer work would

> easilly qualify you for a stipend from VISTA.

I know, but I have income that is adequate (I do not get SSI anymore;

since my father has reached retirement age, I now get half of his Social

Security payment, which is more than SSI ever was), and it allows me to

do work that I think is right, not what pleases someone else with more

money than I. I doubt I would have ever been paid for what I did for

[the woman who lived here for over a year-- you know who she is, but

let's not reveal her name here]... but that contribution was still one

that was valuable, even if I am annoyed that she could not even be

bothered to say goodbye or " thanks. "

[Guest guest]

wrote:

>Well, I have dealt with this on my site. I was not discovered before I

>reached school age because they do not send doctors door-to-door to

>evaluate kids, and my mother was a one-in-a-million gem that did not see

>my bizarre behaviors (in NT terms) as reason for concern. She accepted

>me as I was.

Your mother and mine, plus I had (have) two older sisters who were

all acceptance and encouragement (encouragement of who I was, not

encouragement to be someone else).

Jane

[Guest guest]

Gee, my first Daily Digest as a new member of this group and I find

myself witnessing a public spat between the only two autistic people

that I sort of know, having met you both at an AS support group in

Phoenix a couple of years ago, and having corresponded a great deal

by e-mail with for a short time thereafter.

But, before I throw in my 2 cents worth about what you've both

written, I suppose I should briefly introduce myself: my name is

Rick, I'm 46, as yet undiagnosed with AS (but will vouch for

me) because I've yet to find a doctor who knows much about it (thanks

again, , for the recent referral to a doctor you think does ...

I hope to see him soon). I am on SSDI for Major Depression and have

also recently been diagnosed with PTSD (Post Traumatic Stress

Disorder). 's encouragement and support (via e-mail) when my

disability denial was being appealed two years ago (and while I was

living for 4 months in my station wagon due to lack of funds) was

vital to me. I have no family and no friends, just my cats for

companionship. I also happen to be gay. Some might view my

sexual/romantic orientation and my autism to be a bit of a double-

whammy, but I wouldn't change either fact about myself even if I

could. However, I do hope someday to regain the ability to engage in

social relationships and to be able to channel my abilities (which

are considerable in some areas) into a meaningful career of some

kind. At the moment I live about an hour east of Tucson in a very

rural area where I came to escape the stresses of urban life. It

hasn't helped. I am extremely sensitive to noise and when, for

example, the neighbor's goats start bleating for hours at a time it

can get to be so painful that I actually have to leave home for a

while or feel like I'm going to lose what is left of my sanity.

Gerald Newport wrote:

> As for my preferring to be paid to speak to NTs, I answer a ton more

> email than you for free, NTs and auties.

No offense, Jerry, but I recently wrote to both you and asking

for a doctor recommendation in Tucson and only replied. It is

true that when I moved to Tucson a year and a half ago and e-mailed

you both to let you know I had (in large part because I was desperate

to find help with my AS and I assumed [incorrectly] that one or both

of you might lend some assistance in guiding me forth) it was you who

replied then and did not. But your reply was along the lines

of: sorry, I'm busy with family issues at the moment and don't have

time for you, good luck. You also said that was in an

especially reclusive frame of mind and I shouldn't be surprised if I

didn't get a response from him, which turned out to be exactly

correct. But, overall, has been enormously generous with his

time and efforts to help me, even though there were many instances

when my personality (as conveyed to him by e-mail) was VERY hard for

him to take. For example, despite my AS, I CRAVE the social contact

that I have been bereft of for so long, whereas being autistic

is rather more comfortable in his chosen degree of isolation from

people. And there were some other issues that divide us that are

really much too personal to speak of in a public forum, but take my

word for it that put aside his discomfort with many things

about me in order to persist in trying to help me survive. And I

know I'm not the only one he has helped in such a selfless manner.

Klein wrote:

> I take my self-assumed responsibility of helping parents and

> fellow autistics seriously.

Man, is THAT and understatement!

Gerald Newport wrote:

> BTW, , if you wonder if any of my comments about the minority

> who collect SSI and don't deserve it were aimed at you, they

weren't.

Do I deserve my SSDI? You probably have no opinion, Jerry, but

honestly I think I would be dead already if I hadn't been approved

for it. I'm just amazed that the government actually granted me what

I needed in spite of the fact that the mental health profession has

NEVER even diagnosed me properly much less offered any adequate

treatment or assistance with life management skills.

Klein wrote:

> They were inappropriate regardless. It is not for you to decide, and

> you cannot possibly know all of the circumstances in any one

person's

> life that led to receiving SSI.

Amen, brother. And it astounds me that anyone could get exorcised

over a person receiving a modest government subsidy, deservedly or

not, when the nation shows neither concern nor remorse over the waste

of hundreds of billions of dollars spent on unnecessary (even

counterproductive) military adventures overseas. And, in any event,

I'm sure there are vastly more people who desperately need and

deserve government assistance who are NOT receiving it than there are

those who are receiving benefits unnecessarily.

Gerald Newport wrote:

> I know you personally, not just as a e-mail person. I think you are

> autistic, not AS and entitled to everything you get and more.

Klein wrote:

> I am genuinely surprised.

And I am genuinely surprised that you (or anyone) would care what

Jerry thinks about your entitlement or lack thereof. To me it seems

astonishingly presumptuous for anyone to judge these matters unless

it is in their professional job description to do so. And even then,

I'm sure the line is often incredibly fine between those who require

public assistance and those who can possibly make it without it.

Klein wrote:

> I doubt I would have ever been paid for what I did for

> [the woman who lived here for over a year-- you know who she is, but

> let's not reveal her name here]... but that contribution was still

one

> that was valuable, even if I am annoyed that she could not even be

> bothered to say goodbye or " thanks. "

And I know of her, too, and it is regrettable that she didn't express

to you her thanks and say her proper goodbyes. But your annoyance,

, demonstrates how much we all have feelings, even those of us

who seem to operate in an alternate sphere and sometimes profess to

have " evolved " beyond the NTs emotional needs....

I know I've thanked you for your help and I trust that you believe I

am sincere. But I also know that, without meaning to, I've often

failed to properly express my gratitude to many other people who

deserved my thanks, not because I'm callous and not because I have AS

(although that may have played a small part) but because I'm human

and we all make mistakes. So for whatever you may think my opinion

is worth, I'll offer up this unsolicited advice: try to let go of

your annoyance with " her " because it is so trivial and it tarnishes

the amazing act of love and generosity you sustained on her behalf,

one which you KNOW she is grateful for even though she didn't

properly express it. It's very possible that her failure to do so is

far more wounding to her now than it is to you. But what do I know?

Lastly, Jerry, I am a newcomer here and I haven't read back through

the threads and haven't got any sense whatsoever of what's been

written in this forum previously. I've only met you briefly at the

meeting in Phoenix and we exchanged a few short e-mails a long while

back. If I fell over you walking down the street I wouldn't

recognize you (nor you me) and similarly I have no real sense of who

you are as a person, so I understand that you will properly take my

comments with a grain of salt. Nonetheless, here goes: make peace

with , because you are both far better off as allies than as

enemy combatants. It was quite a shock (although I suppose it really

shouldn't have been) to open my first Daily Digest in this group and

read what could reasonably be described as a flame war (albeit of the

more civilized variety) between the only two autistic people I (kind

of) know. I hope the hostilities end.

Rick

[Guest guest]

wrote:

> Desire for social contact is not part of the official criteria

> differentiating autism and AS.

Absolutely right. My mistake in implying otherwise. The point I was

really trying to make is that has always been uncomfortable

with my desire for greater social contact with him (and yet he worked

very hard to help me), and I ascribed our personal differences to our

respective (presumed) diagnoses, which may be relevant for the two of

us but it shouldn't be extrapolated to all people with AS versus

those with autism.

> Some people *do* think the military is doing the right thing. I'm

not

> here to debate anyone on that, just to mention that not everyone

shares

> your point of view.

Of course. But my opinion about military spending, as one example,

is relevant to why I think it is silly for others to fret over the

relatively minor problem of fraudulent or " unnecessary " spending on

public assistance programs.

> Certainly there is a lot of waste in government. I work in

government.

> The biggest waste, FWIW, is not in the war in Iraq even if you

believe

> that the war is a mistake. The biggest problem is that we have a

> bureaucracy that wastes money in every single program they

participate in.

No need to convince me, . The last job I held was working in a

research lab for the VA (Veterans Affairs). It was the only time in

my life I ever worked outside the private sector and, frankly, it was

the horrifying (do as little as possible to earn one's paycheck)

mindset of most of my government worker colleagues that I believe

finally pushed me over the edge into Major Depression, which

ironically has now left me a financial ward of the federal government.

Other than our disagreement about the validity of the spending in

Iraq, I concur with your opinions.

[Guest guest]

Rick wrote:

> Gee, my first Daily Digest as a new member of this group and

> I find myself witnessing a public spat between the only two

> autistic people that I sort of know, having met you both at

> an AS support group in Phoenix a couple of years ago, and

> having corresponded a great deal by e-mail with for

> a short time thereafter.

Hi Rick, and welcome!

I've read all three of your posts so far, and already like you.

You sound very sensible. As for the " flame war " going on, I'm

sure that everyone who reads it will make up their own minds.

No use in me stating the obvious.

Clay