Sunday, July 29, 2007

Anna Salamon Defends Amanda Baggs, Weakly

Someone claiming to be Anna Salamon, an old friend of Amanda Baggs, showed up here to defend Baggs' questionable autism diagnosis. So far, Salamon has not responded to Watson's challenge which follows.

watson said...
Anna, Thank you for responding.

Let's be clear. 'Past, Present and Future' was written by Amanda to give an adult face to low-functioning autism, and to speak vociferously against any intervention and treatment for autism - on behalf of all low-functioning children with autism.

In this piece Amanda gives the impression that she was at one time a low-functioning child with autism. That her speech didn't make a lot of sense, that she was not toilet-trained, that she banged her head on walls and ripped her hair out in clumps.

That is not true, is it, Anna?

I mean, presumably, at age 12, when you were discussing conformity vs non-conformity, it wasn't one-sided, with you doing all the talking and Amanda sitting in the corner, virtually bald, banging her head on the wall, and talking nonsense.

Presumably she had actually read the Tao Te Ching that she lent you - and she hadn't just sniffed and rubbed the pages against her face.

Amanda gives the impression that she had ABA and that although at times she was rewarded, she was more often than not, tortured, beaten, punished, and in this horrific way she was taught to speak. "Non-communicative echolalia".

That is not true. Is it, Anna?

That even though they tried to teach her to use the toilet they failed, and at the time of writing the article at the age of 24, she "STILL" soiled her clothes.

That also is not true. Is it, Anna?

She was using the toilet appropriately at 12, wasn't she? According to Amanda, she had been fully toilet-trained before she was three years old.

Perhaps you can tell me why after being brutally treated, and having watched other children with autism "thrown on the ground, stripped, and tied up with their own clothing... and having "heard them screaming and crying when they were thrown in the closet", she, your friend, Amanda Baggs, wrote in Dec 1997:

"Many children (mostly autistic) at my school use those picture card things. Everything in the room is labeled with them, and they have schedule boards with velcro on them to attach the pictures. When they want to do something, they point to the picture (often with a lot of coaxing).

My school's pretty neat actually.

It's special-ed for ages 7?-22. There are maybe forty students, of all kinds of problems (I'm in the high-functioning class, recovering from schizophrenia). I get to work with one of the autistic girls once a week, and I really enjoy it.

I want to do things like that professionally, eventually. Once I get out of this school and back to college... "
This paints an entirely different picture, doesn't it?


Now, Amanda might think that she "had autism" when she was a child, and it wouldn't surprise me in the least if she had what are now called "autistic traits", after all they are not that unusual even in the 'normal population' but can you honestly say that Amanda's first 12 years were anything like this in this article by Scot Sea.


Be honest. They weren't, were they?

And that is what's wrong with what you are doing coming to Amanda's rescue, just like the cavalry, when any discussion is raised about her past - on AFF, on Metafilter, on here.

Why?

Because neither Amanda nor you have lived with Autism. Neither of you have cared for a loved one with Autism 24/7, 365 days a year. Year, after year, after year.

Scott Sea's daughter has low-functioning autism. Amanda has taken it upon herself to speak for this child and for tens of thousands like her.

What do you think will happen to this young girl when her parents are gone? Who will take care of her? Not you in your Maths Department at UCSD. And certainly not Amanda.

Amanda's interests center around Amanda and Amanda's wants and needs. Her interest in autism is primarily an intellectual one. And she loves being consulted and giving advice. After all, she has been doing it for years on various support forums: schizophrenia, PTSD, DID, Bi-Polar,..

She has lived most of her life inside her head and her experience of LIFE has come from the numerous books she has read.

Parents of children with autism, on the other hand, are living day after day with stark reality, in the blood and guts of it all. Our lives revolve every day around someone else, not ourselves. That's the difference.

What you may not know is that since 1999 there has been an active campaign to paint a rosy picture of autism, and, from reading some of the posts at AFF, it is obviously working extremely well.

Stimming has become foot jiggling, stroking one's beard, biting one's bottom lip, or tapping a pencil. Echolalia has become BSing your way through school and getting straight As by storing large sentences and sentence-pieces and recombining them to look like you know what you're saying. Perseverances have become special interests or collections. Having sensory problems is having to remove tabs on clothing because they feel scratchy. Social difficulties have become shyness or not being able to do 'small talk'.

Today "having autism" or "being autistic" means being a geek or a nerd, or getting a certain score in an online Aspie quiz. It means being special and superior to Neurotypicals.

Before this bullshit started, no parent wanted to hear that their child had autism. Since it was suggested in 1999 that Einstein might have had it, pseudo-intellectuals think they have it - or their quirky children might have it.

Only problem is: they don't.

I am not at all surprised that you are supporting Amanda now because you have apparently been a steadfast friend who has stood by her for many years throughout her schizophrenic illness. Not many friends would do that.

But please consider that by supporting Amanda in this fiction that she had full-blown autism as a child and, as such, that she should be free to speak against treatment for children with autism, you are also agreeing with what she says:

"Autism is fundamentally beautiful."

Do you believe that? Now read Scott Sea's article again, and tell me it is.

Sat Jul 28, 09:31:00 PM PDT

Wednesday, July 18, 2007

Amanda Baggs, Prelude to Becoming Autistic

What Amanda said in the interview and what she was saying 8,9 and 10 years ago...



"Also deliberate retreat into fantasy — not a “disorder” driving me to do this but a choice to avoid reality if I could. "

Oct 24 1998

"Toward the end of sixth grade I started thinking I was receiving telepathic messages from someone, possibly someone who lost a sister... that summer I started hearing voices"

Oct 1998

"I had really lost touch with reality, and was constantly hearing audible voices at that point. "

April 7 1998

"Schizophrenia is not necessarily a complete mental dysfunction. But it -is- a mental dysfunction, most of the time. For a long time, schizophrenia kept me on the sidelines of things. I watched, but there was no way I could join in. The voices were, most of the time, not saying anything "religious" in nature. They were threatening me with permanent insanity if I didn't do what they said when they said it. I do think some of my "visions" (read "hallucinations") may have meant
something. The black spiny fractallene hole I saw on people, I'm sure had some significance. As did the viewing of a city as a circuitboard.
But for the vast majority of the time, I was just outright psychotic.


"I began being sexually abused in adolescence."

Apr 13 1997

"First, I was sexually abused by one of my brothers for a few years.... I was also sexually abused by my grandfather in one instance...."

"Went away to college (yes, at 14, early, all that) which removed the sexual abuse from the immediate picture. (Apr 1998)"

"Then, when I was thirteen, I started dating a boy I met at a summer programme. We went to the same college the next year, and I was excited at living close to him. That was when the physical abuse started. "


"Like right now people often consider me “low functioning” for not speaking because speech is really important to them, I guess then I would have been “high functioning” when I did speak even though my actual amount of communication (even as measured on tests it turns out) was lower."

People think when you lose things it means you were always “normal” and this wasn’t the case with me. I lost whatever speech I had somewhere between 12 and 15 months. When I regained it, it was echolalic. One of my earliest language memories is of hearing my mouth say the words “Saint Bernard” without knowing what words were, that they had meaning, or even that it was my mouth the sounds were coming out. Even when my speech sounded more normal, I had trouble with receptive language, and didn’t always understand what I was saying.

Apr 26 1999

"I was a very well-behaved child who only had to be told once not to do something"

Dec 8 1998

"(She's principal of a different school now) and she said, "You were such a delight in the classroom." and that that's what other teachers remember
about me."

Sept 15 1999

"I was tested 'gifted' in school".


Oct 24 1998

"I started taking classes at a community college... went to CTY for the second summer (a summer programme that does intensive school work but the social stuff is intense too in a good way... lots of unconventional people there) and then to an "early-entry" college..."

CTY = The Johns Hopkins University Center for Talented Youth:

http://www.jhu.edu/news_info/news/home06/jan06/ctyalum.html
About The Johns Hopkins University Center for Talented Youth (CTY)

"CTY conducts the nation's oldest and most extensive academic talent search and offers educational programming for students with exceptionally high academic ability.

For 26 years, CTY has identified America's top academic students in grades two through eight and provided challenging educational programs through their 10th grade year. Students who score at or above the 95th percentile on standardized tests normally taken in school are invited to participate in CTY's Talent Search, during which they take an additional set of standardized tests used to measure mathematical and verbal reasoning."

June 6 2007

"I'm brain-damaged, and I have a significantly lower IQ than I used to."


"Complex PTSD in reaction to institutional settings in adolescence."

Dec 11 1997

"I know that two months in the hospital was enough to drain just about everything out of me. After those two months, they were going to put me in an institution, but when my parents visited it they said that I absolutely couldn't go there. Fortunately, they sent me to a residential treatment centre instead and the staff and doctors there dragged me kicking and screaming out of my little psychotic hole into reality again. But even now, I am haunted by that other possible future. In another universe, I am probably in the institution now and will die there. I always wonder, why was I lucky? How did I get out of it? I don't think I'll ever know... "

"Went away to college (yes, at 14, early, all that) which removed the sexual abuse from the immediate picture (though I was having physical flashbacks at the time and didn't know what they were). But then I started dating a guy older but close to my age who was at first very compassionate about my problems. Then he got sick of watching my "episodes" and having a "crazy girlfriend" and started using a -lot- of physical force to get me back. Didn't work, but it etched into my brain. (some of the "episodes" were flashbacks from previous stuff)."

Apr 10 1997

"When I was in the hospital, and refusing medication, my mother had them inject me with medication until my paranoia had gone away to a point
where I could take them on my own....It seems cruel but I am grateful for what it did for me, and accept the few minutes of terror that the injections produced. At first, I thought they were trying to poison me, and I would freak out. But after a few weeks (I think) I was clear enough to see that they were helping me."


"Typing was more reliable. I was starting to be exposed to people whose experiences of the world were closer to mine, and their use of words helped me to learn which words to use myself."

May 14 1999

"I hated writing. It made me frustrated and it hurt my hand both from holding the pencil and scraping across the paper....When I learned to type, I started liking "writing"-type assignments as long as I could type them". "Some of this might be due to being left-handed and not having a proper pencil grip..."


I’ve walked into traffic without meaning to.

Aug 1997

Ophelia wrote:

" you ran into the road repeatedly. "


"I “regressed” in infancy. "

Dec 1998

"I did most things early (including talk) by my parents say they were told I took slightly longer than normal with the toilet training (not as long as your daughter)." (i.e. Before the age of three).


"The first book I ever read, quite young, was a field guide to birds rather than an easy reader book."

Sept 15 1999

"I think I was reading around age 9 months, although not diagramming sentences until junior high) It is a part of my reality, because that's what I did."


"I have so much imagination that my pretend play as an adolescent was detailed and full-immersion enough to be part of what got me labeled psychotic."


5 Apr 1998

"I would have hallucinations that I didn't know were related to any of this, like seeing spiders and/or butterflies literally covering the floor, crunching under my feet. I didn't like seeing flower petals and would go to great lengths to avoid them, thinking they were dead butterflies. I also had dreams I thought were real, and every time an object from those dreams appeared in real life...I knew enough to keep this fairly secret (and it was all the sort of stuff an imaginative kid would come up with, right?) "


May 1999

"I remember requesting to go into a psych hospital because something in me was trying to die and something in me didn't want to. I remember being told it was abuse, or previous drug use, or being away from home or various other things, that caused my problems and that I was 'just fine' before I left. "


Aug 1997

Ophelia wrote:

"you tried and did hurt yourself and others. you refused to eat. you went a digging in a school yard and tried to throw a chair through a window there. you ran into the road repeatedly. there aren't a hell of lot of options when some starts doing that stuff. "


"I went to college *and then* special ed in that order."

Apr 5 1998,

"I'm also going to a special-ed school mainly for therapeutic stuff."


"I was in ballet because the alternative given by my doctor was a leg brace. My mother helped move my body through all the positions."


Sep 9 1998

"I learned left from right when I was probably two or three and had been enrolled in ballet to correct a foot that turned in... they drilled it into my head... when I was facing east anyway. Meaning I had to face east to know which side was which for awhile."


"Later on I was forced to play certain kinds of ‘crazy’ by various psychiatric professionals. I gave them what I thought they wanted out of me. To make matters more confusing, sometimes their drugs caused delirium, mania, or hallucinations, convincing me that maybe these people were right about me."

Apr 12 1997

"I'm not hearing voices anymore. I am, however, receiving messages from other beings which use thought in words to communicate... They call themselves the Others, and say that they came from the sky. They say they are like me. They say I will meet them someday, but that now is not the time. They say I won't hear voices ever again if I work at it."

"There is a group of beings that created the universe, but they only watch over it; they don't "run" it. And I should know -- I am one of them, and I am in contact with several of them. We do not demand belief."

"i have thought for years that i was an elf until the past few weeks when my therapists are starting to convince me it is a delusion. "


May 5 1997

"The Lithium helped curb my mania, where sometimes I would think I was God, I'm 16 years old."

May 29 1997

"I attacked someone last night. I didn't want to, and the Others were screaming for me not to, but I did anyway....Does anyone else feel like they are
being used by an outside force to explore, like a probe sort of?... I've realised that I'm an elven anthropologist of sorts. I look human, interact with humans, and study humans. But sometimes I study things that I don't particularly want to because I'm being guided by the Others and the collective elf-mind. "

Dec 16 1997

"Basically, immediately after I (deliberately) broke off contact with her, I realised I was an elf... There is nothing wrong with not being human mind you (-I'm- not!), but there was definitely something wrong with her. And I know very clearly that I need to find out what it is to protect myself and the rest of the world. I really think given the right knowledge and opportunity she could destroy many humans if not the whole world. I think I'm the only elf that knows about her... I'm getting really scared... I suspect that if I find that out, I can use my own knowledge combined with the Others and the Elves to figure out what to do... "


"The randomly-assigned doctor in a psychiatric facility when I was 14 got an overriding impression of autism and ‘idiot savant’ from an interview with my mother (who also knew little about autism), and then met and tested me, still playing ‘crazy’, and continued to believe I was autistic."

Mar 16 1999

"I thought that when I first read about autism, too. It explained everything, but it also seemed 'pretentious' as you said, to believe that I was autistic in any way. Now I have an official diagnosis (which doesn't necessarily mean much) of atypical autism (pdd-nos) "



"When I finally learned that I did not have to ‘play crazy’ anymore, I did go through a period when learning about autism where I tried to force-fit myself into a lot of autism stereotypes I heard."


"In reality I have had two so-called regressions, one in infancy (before which I was also not “normal”) and one in adolescence. "


Dec 26 1998, 9:00 pm

"I can count myself in as a lefty with a high-functioning form of atypical autism."


Dec 7 1997

"Many children (mostly autistic) at my school use those picture card things. Everything in the room is labeled with them, and they have schedule boards with velcro on them to attach the pictures. When they want to do something, they point to the picture (often with a lot of coaxing). My school's pretty neat actually. It's special-ed for ages 7?-22. There are maybe forty students, of all kinds of problems (I'm in the high-functioning class, recovering from schizophrenia). I get to
work with one of the autistic girls once a week, and I really enjoy it.

I want to do things like that professionally, eventually. Once I get out of this school and back to college... "

May 13 1998

"I think I combined the two and thought that the government, who was
out to get me, working through my father....was also exerting mind
control. Yes, I also thought that my food was being tampered with
(but mainly hospital food, where you never know), that a transmitter
aimed at me was causing the voices (the voices told me so, after
all), the TV/radio talking to me, and on and on with the stereotypical stuff."



Mar 1 1999

"I developed schizophrenia at 11."