The Return Of Amanda Baggs

Well, it looks like the main blog of Amanda Baggs is back up again, and she even stopped by to make a few comments on mine.

First, she takes umbrage with my impression "I can't recall one video, blog entry, or Usenet posting that would imply anything other than the fact that she is largely in constant motion 24/7/365."

Yes, I would have to say I did not phrase this as well as I should have.

I was making a comment in reply to an article from a presumably small Tennessee newspaper that said, "Amanda Baggs, who is seemingly in a vegetative state, uses a typing device and has gone through college."

I was just really struck by the use of that term "vegetative state".

In fact, Amanda herself says she doesn't think the term "vegetative state" should ever be applied to a mammal.

However, she does say there are long periods of time when she is quite still, including recently when she says she's been flat on her back for a number of weeks recovering from a nasty bug.

However, what I'm wondering about is how Gina Gallutia from The Tullahoma News got the idea that "vegetative state" would apply to Amanda in the first place.

Of course arguably the most famous work of Amanda Baggs is In My Language, a video that features a level of motion that, well, causes some people to even get a bit freaked out.

The other that comes to mind is Happy Dance. This one, at least according to Amanda, was even officially diagnosed as an "inappropriate emotional display".

"Inappropriate", BTW, is a neurotypical euphamism for "You're freaking me the f*ck out."

Another one that comes to mind, and has received, IMHO, an "inappropriate" amount of critical attention :) is How to Boil Water the EASY Way.

Alot of motion.

Not necessarily disturbing, but potentially confusing.

There are 27 videos in all on Amanda's YouTube site.

There are an additional nine on her LiveVideo site including of course Because You Are Not One Of Us that not only includes some VERY energetic, almost frantic motion, but also a certain "nervous energy" in Amanda's own voice that certainly does not bring to mind anything approaching "vegetative state".

Let's not even get into the THOUSANDS of Usenet postings, hundreds of blogs and blog comments, the CNN and British TV appearances, the conference appearances, and probably a few dozen other things I haven't kept up on.

Yes, sometimes my own judgement is not all that accurate, but, as a matter of first impression, you get the distinct idea that Amanda has a level of activity somewhere between that of a sitting United States Senator and William Shatner.

And, just a wild guess but I'm figuring this reporter from Tennessee has not been keeping up with Amanda's battles with plumbing contractors and various other issues since 2002.

And that's not even taking into account Amanda's being literally embroiled in a federal case involving - apparently - Kathleen Seidel and a PIZZA ...

Amanda Baggs = "Vegetative State"??

Now, when you have a Google Alert set up for "Amanda Baggs", admittedly you're taking your life in your own hands, but this one cracked me up:

There's a presumably very small "mainstream media" outlet by the name of The Tullahoma News (TN) that has a staff writer by the name of Gina Gallutia who was apparently assigned a story about Education majors at the Motlow State Community being introduced to a 10-year-old with autism as part of their training to be teachers.

Of course as autism is increasingly prevalent DESPITE the removal of mercury preservatives from most vaccines, having some formal autism training for future teachers is not a bad idea at all.

However, I'm thinking Ms. Gallutia needs some autism training herself.

She writes of Temple Grandin, "For instance Temple Grandin has learned to deal with the devastation of living with autism and has progressed through the education system and is now a professor. She describes autism as constantly flipping through a visual file."

"Devastation."

Well, sounds like John Best must have gotten to Ms. Gallutia too. And I'm pretty sure she's trying to describe how Temple Grandin speaks of "thinking in pictures" rather than words.

The beaut of this article is this one though - "Or Amanda Baggs, who is seemingly in a vegetative state, uses a typing device and has gone through college."

Now, it's a foregone conclusion that there's a great many descriptions, many of which are not necessarily complimentary, that have been applied to Amanda Baggs, but I'm thinking "vegetative state" is not one of them.

Maybe she's thinking of some of the staring episodes Amanda has described having from time to time?

Other than that, however, I can't recall one video, blog entry, or Usenet posting that would imply anything other than the fact that she is largely in constant motion 24/7/365.

Oh, yes ... unfortunately there's no email address or other obvious way to contact Gina Gallutia, but I'm thinking we need to take HER on a little adventure of "Autism 101 Featuring Amanda Baggs" ... :)

Amanda Baggs (Ballastexistenz) Goes Missing!

Yes, for those of you who have been wondering what happened to Amanda Baggs's "Ballastexistenz" blog on Autistics.org, for the most part, your guess is as good as mine.

HOWEVER, there is an entry in my RSS feed from that site that says the following:

This server is going down for maintenance.
from Ballastexistenz by ballastexistenz

I have already performed a backup in case something goes wrong. Please make your own copies of any comments you might leave in the meantime, because they will not be included in the backup.

Yikes - years upon years, for one thing, of MY witty comments will be lost forever.

The message also does not seem to suggest that the site was going to be down for DAYS.

Could this sudden dissapearance be related to the Kathleen Seidel situation?

Interesting ... very interesting.

Anyone have any info?

Inspiration

I was reading through Amanda Baggs' "Obligatory Post-CNN entry" and she was speaking of not being a "one-way inspiration machine".

That of course got me to thinking that, although my usual areas of interest are the unusual and the noteworthy, sometimes the "uninitiated masses" deserve some attention at well.

In other words, although the ONE nut screaming at the top of his lungs DAILY that somehow, as Amanda Baggs herself says it, this "semi-friend" of mine with nothing more than a computer and a video camera is somehow doing irreparable harm to his son, some thought needs to be devoted to the 50 or so OTHER posts that come out, particularly after a CNN appearance saying, "This is the most fascinating video I've ever seen in my life."

Now, it looks like Amanda hasn't had a chance to moderate the comments section of In My Language in a while and so I haven't been able to get this conversation started over there where it rightfully belongs, a thought that hit me after the Wired and the latest CNN wave is that I don't think ANYONE has taken a good shot at evaluating the basic artistic merits of the thing.

Now, yes, sometimes, particularly after learning more of her story, the term "inspiration" starts getting thrown around, but, the thought hit me - inspiration to do what?

There are other much clearer "inspirations" in the world. The one that came to mind as this thought began to form in my massively sleep-deprived brain was Jimmy Doohan. There are many, many people - I'm guessing hundreds and maybe thousands, who were inspired by Jimmy Doohan's portrayal of Scotty to take up careers in engineering.

Yes, think about this - sometimes a COMPLETE figment of someone's imagination can be an inspiration to someone.

But I'm wondering what exactly Amanda Baggs might inspire someone to do.

The usual thought would be that someone has a child along the lines of Sue Rubin who has terrible trouble communicating verbally and, after watching some of Amanda's work, someone might think, "Ahah! Maybe a computer of some sort might help here."

But there are other forms of inspiration that occasionally come to mind.

One - disability or no - there are VERY few - at least as a percentage of the total population - who can say they've produced a work of art of any sort that has moved anyone in a significant way. It's certainly and inpsiration in a way that the technology has finally caught up with us enough that just about anyone has the CAPABILITY of producing something of IMPORT if they have "the gift".

The other area that I think some overlook is that, no matter what your speculation is about Amanda's exact situation, we're clearly talking about someone with VERY severe "Activities of Daily Living" issues, and ANYONE with that level of difficulty who has avoided being probated and kept herself out of an institutionalized setting deserves a F*CKING MEDAL no matter how you slice it and dice it.

From my mother's situation I've seen that institutionalizing ANYONE is inherently dehumanizing and quite honestly ought to be banned. Putting someone down would be FAR more humane than the humiliation and belitting I've seen my mother put through.

But that, of course ... is another topic ...

On Amanda Baggs' Verbal Abilities

Okay, Amanda Baggs herself has contributed a little more information about the video that I found on the blog of her #1 Fan that I wrote about yesterday.

If I'm following this correctly, "Being able to sing, or to repeat words that someone else is saying to you, is not the same as being able to use speech for communication purposes."

True.

This is a phenomenon present in a great number of exotic BIRDS, but again, deserving of a bit more explanation in this case.

And what I mean by that is that the TOPIC is deserving on an explanation. Amanda as an individual doesn't owe anyone anything, except to the extent of anyone who has chosen to be in the public eye and present information that leads to some real head scratchers.

She does mention some blog posts she has made on the subject. However, Amanda is quite probably the most prolific writer I have stumbled across since Isaac Asimov and it is frequently difficult to digest large portions of this writing without the equivalent of a trained staff of paralegals.

Now ... back to the original intention of my post ... :)

Does anyone else reading this suffer from a similar phenomenon?

Is it just stage fright to a much greater degree?

If a person is capable of singing and speaking French, it looks like the raw connections from the Broca's area to the vocal cords are intact - then where is the "pipe clogged" that would prevent a person not from, say, speaking in front of a crowd of 3000 people, but rather, say, simply from walking up to the counter and ordering a Big Mac or some such?

Amanda Baggs SPEAKS?

Because You Are Not One Of Us

Okay, NOW I think we have some genuine room to question what might be going on with Amanda Baggs.

Turns out she has been active on LiveVideo as well as YouTube.

With one interesting difference ...

A comment under her video handle of "silentmiaow" dated January 23, 2007 states that the voice in this video is HER OWN and not generated by a computer.

Very, very interesting.

Yes, this one I think IS deserving of an explanation.

Or at least some speculation.

Anyone??

The Amanda Baggs Wired Article

So I finally get around to reading the Amanda Baggs article in this month's Wired only to find out, of course, that the thing is posted online.

I think the most fascinating thing in the article is mention of the closest I have seen so far to a SECOND Amanda Baggs - namely someone named Michelle Dawson.

Now unfortunately Michelle Dawson doesn't blog as often as Amanda, but there was something about the article that really caught my attention. It said, "Michelle Dawson doesn't drive or cook. Public transportaion overwhelms her."

Interesting ... now The Old Man drives and cooks, although the way he drives and cooks would scare the average person on the street to death. And public transportation certain has overwhelmed him from time to time.

Of course, if you have any Google Alerts on "Amanda Baggs" set up for the last couple of weeks you have been treated with a most FASCINATING barrage of "Oh what a fascinating video Amanda made," peppered with the usual ranting of a certain individual who seems convinced beyond a reasonable doubt that Amanda is not autistic AT ALL.

Now there has been some traffic associated with some of those posts that have caught my attention because the concepts have come up before. Mainly it seems to be that many people with autistic children don't believe Amanda's case is very applicable to the situation of their own children at all.

Yes, there does seem to be a WIDE range of functionality associated with this condition.

There have been those of course who have complatined severely that the Dustin Hoffman performance in Rain Man was not very representative of real-life people with autism, and yet, let me tell you, I shot almost bolt-upright in my seat when I saw that movie - "That's The Old Man!"

Minus the not knowing what to do when a smoke alarm goes off.

On the other hand - I take that back.

If a smoke alarm went off The Old Man might not stand there and beat his head, but I'd put 80:20 odds that he would have to call ME first before figuring out that he needed to call 911.

Are these people "low-functioning autistics", "high-functioning autistics" or severe Asperger's cases?

Amanda once told me, "Here's the deal ... I think it's ALL autism." But, even if it's not, how anyone can say that a person exhibiting such behavior is not in need of assistance is quite beyond my capacity.

And perhaps it's not - perhaps whatever has afflicted my father, my cousin, my great-uncle, and countless other people I have known has NOTHING to do whatsoever with the condition that leaves children utterly unable to communicate and constantly frustrated to the point of needing to hurt themselves.

But even if that were the case, that doesn't change the fact in the slightest that those individuals should be entitled as human beings to the understanding and assistance they need ...

Will The Real Amanda Baggs Please Stand Up?

First of all, in order to head off the barrage of emails this post is almost certainly sure to generate, let me just say that I mean no ill-will to Amanda Baggs as a person. In fact, there was many a time I was at my wits end with The Old Man and she gave me at least some ray of hope that individuals even MORE impaired than him can have something of IMPORT to contribute to the world.

That being the case, there is this matter of "Amanda Baggs" the "phenomenon", and, well, for better or worse, anyone who volunteers to be in the public eye via CNN junkets, web sites, and various public speaking engagements is somewhat subject to scrutiny.

In fact, although I don't think she's seriously considering running for public office, and it would be almost impossible for one human being to adequately digest all of her writings in a single lifetime, I think it is a fair interpretation to say that Amanda advocates a political view that many manifestations of the autism spectrum are not in need of "curing" but "accomodation". That being the case, yes, in the broadest sense, I believe the background of someone expressing such a belief is subject to scrutiny if the expression of that belief has a real possibility of affecting public policy.

Her biggest detractor, if I understand him correctly, has a severely autistic son. The detractor is CONVINCED that thimerosal caused his son's autism and, I'm speculating that he is looking for some BIG bucks from the government for causing this damage.

Of course a person with such a belief would have some motivation to attempt to supress a belief that autism may not be in need of a cure at all, so, in a fashion eerily similar to 9/11 conspiracy theorists, he starts hammering away at certain bits of Amanda's background.

The 9/11 conspiracists keep preaching over and over, "freefall speed" and "pull WTC 7", and Amanda's detractor seems to take an absolute fascination with a video she made about how much trouble she has boiling water, plus some postings she made a number of years ago about being an "elf" from the Tolkein novels, some miscellaneous drug use, and that she apparently was more "functional" when she was younger.

These ideas of course can be gleaned from Amanda's MASSIVE collection of Usenet postings, and I believe these are fair game, but I'm hardly convinced that anyone has yet developed an adequate theory to describe this massive body of work.

Of course that's not enough - he just HAD to bring in someone who claims to have known Amanda as a teenager who proceeded to publish a pretty healthy collection of largely unverifiable information.

Of course THAT prompted someone to get on MY blog who swears up and down to have actually examined Amanda's medical records.

Now part of this story this person is telling on my blog is interesting, and would tend to explain a story that Amanda has written about at times. If I understand it correctly, Amanda had a doctor who was SO insistent that Amanda needed to be institutionalized because of her autism that her parents had no choice but to try to get her diagnosis changed to schizophrenic in order to avoid having her taken away from them.

Well, I'm not sure I'm too convinced of the accuracy or relevancy of most medical records either. Certainly when dealing with mental illness and functional impariments you can get any number of diagnoses. It's certainly possible to get multiple diagnoses of PHYSICAL ailments.

It would probably be utterly impossible to get an objective account of the events, but what might be FASCINATING to explore is the basic public policy consideration - should a person be considered to have a Constitutional right to do what Amanda was doing that had one of her doctors convinced that she needed to be institutionalized.

Of course obtaining an UNBIASED, DETAILED account of those events might prove somewhat difficult ...

Drooooopy Vs. Amanda Baggs

I stumbled across Amanda Baggs quite a number of years ago when I first started suspecting that The Old Man had a scorching case of Asperger's.

Now Amanda was generally comforting in a way because I would tell her about some particularly troubling habit my father has and, generally, she would top it with some story from her own background that was even WORSE.

Of course then along came "In My Language" and CNN's discovery of Amanda, so, like any good blogger who follows autism topics from time to time, I started setting up RSS feeds to see what might come up on "Amanda Baggs".

Well, as initially shocking as it may seem, Amanda has detractors. Apparently some of them are so convinced that Amanda is in some way up to no good that lawsuits have been flying.

If I understand it correctly, one of the main assertions is that Amanda has somehow deliberately copied key elements of the persona and life story of a certain YouTube user called Drooooopy.

Yes, there does seem to be a certain surface similarity - apparently up to and including the model of the speech synthesis unit they both prefer to use. What of course was a little frightening to me as I was looking through Drooooopy's videos is that MY OWN "tics" in many ways are even more reminiscent of Drooooopy than they are Amanda.

Now, there's someone else out there I'm beginning to grow suspicious of due to there being SO many places where he has posted over and over and over again something to the effect, "Look, I have dealt with Low Functioning Autism day after day for over a decade and because Amanda does X and the other person with Autism does Y, Amanda couldn't possibly be autistic."

Of course just about everyone who has had any experience with the condition can tell you how TREMENDOUSLY heterogeneous it is.

Take for instance Amanda and Drooooopy vs. The Old Man. Amanda and Drooooopy both make YouTube videos. Amanda makes appearances on CNN, British television stations and also, if I understand it correctly, speaks frequently at autism spectrum conferences. It also sounds like Drooooopy, under the right circumstances, would be willing to do similar things.

The Old Man is so paranoid he wouldn't even get an account on Tri-State Online years ago because he was afraid to sign the "indemnify and hold harmless" clause of the user agreement. On many, many occasions I've told him some TV coverage might be helpful with some situation he is facing, but he really, really, really doesn't want to be in the public eye in any way, shape, or form.

Does this take away from the fact that he can't take loud sounds, has to do exactly the same things at the exact same time of day, eat exactly the same foods, wear special clothes that he doesn't find irritating and a good half dozen other "tics" common among many others on the autism spectrum? I don't think so.

But probably the most interesting of the "anti-Amanda" traffic is the attempt to analyze her early web postings. Yes, it's pretty clear she's gotten a number of different diagnoses over the years. But, then again, so did John Elder Robison.

As a matter of fact, if Amanda's actual SYMPTOMS have drifted considerably over the years, I, for one, would be even MORE fascinated as everyone in my family has noted a steady deterioration of The Old Man's functional level over the years.

Why, as a matter of fact, should the theory be off the table that there is such a thing as adult-onset autism?

Thimerosal has been used in vaccines since the 1930's, and yet the explosion of autism cases has not taken place until the last 20 years or so.

Presuming for a moment some OTHER environmental factors in place over the last couple of decades, is it not possible that similar damage could be done to an ADULT brain as is done to the brains of younger children with autism?

Yes, as some of the people seem to point out at the conferences Amanda attends, there are things about her case that are different from other autism cases. Then again, all autism cases are different.

Does her case follow closely that of any specific person who is currently an autistic child? Maybe not.

Is Amanda simply some sort neurotypical actress ala LonelyGirl15 with some entirely different form of mental malfunction? Well, maybe, but somehow I don't think so ...

"Finding Amanda": Review

Well, the "Finding Amanda" segment on CNN last night was pretty fascinating.

If I understand it correctly, the producers originally wanted to do something along the lines of a one-hour show JUST about Amanada, but she was more comfortable being part of an ensemble of a group of others with autism-spectrum disorders.

That approach somewhat backfired I think because you really didn't get a chance to get a full picture of Amanda's lifestyle and motivation on some issues.

One area that really seemed to get battered due to editing was the scene where she was giving a presentation in Canada and got so frustrated with the audience for saying to her over and over again, "You're an exception," that she had to leave and go to the ladies' room and scream her head off for ten minutes. You never really got to see the exact circumstances that led to that particular overload/meltdown.

Speaking of sensory overload - they mentioned something about the conference that they didn't use microphones because the feedback from the speakers can drive autistics batty and, even more interesting, it was explained that at such conferences it's not considered rude if people get up and walk around because autistics sometimes have trouble staying seated for long periods.

Yep - I'd have to say The Old Man has this issue.

Mrs. Axinar says that *I* have this issue, and, yes, at times, I'd say she's correct.

Overall it was a quite fascinating segment.

I hope Amanda does sometime summon the strength to do the whole hour. There are many who don't have the wherewithal to do the deep internet research who might benefit from having a video record of the "full story".

Related
Transcript of Anderson Cooper 360 episode featuring "Finding Amanda"

Amanda Baggs on CNN's Anderson Cooper 360° Tonight At 10pm EST

Quite possibly one of the world's most vocal autism activists, Amanda Baggs (aka Ballastexistenz) is scheduled to be on CNN's
Anderson Cooper 360° tonight at 10pm EST in a piece called Finding Amanda.

Amanda in many ways is hard to get a handle on conceptually.

She is non-verbal, but writes very well.

Very often when I'm trying to explain The Old Man to people I often find myself saying, "Well, it can certainly be MORE severe - have you ever seen In My Language?"

Every time of course I mention the name "Amanda Baggs", Mrs. Axinar starts humming the same tune from In My Language.

Amanda of course does have a detractor or two.

But, from everything I have read and many, many LENGTHY discussions I have had with her, she's autistic.

Big time.

And sometimes I swear I don't know whether or not to feel sorry for her or jealous of her.

Quite clearly she has severe, severe functional deficits in many, many areas, but, in exchange for that it sounds like she has people who come help her on a regular basis and she, mercifully, doesn't have to confine herself to a cubicle or any other structured work environment every day where she quite probably would have to put up with nearly endless foolishness that is generally quite difficult for anyone on the autism spectrum to understand.

It also sounds like she also has SO many tics that she wouldn't have some of the issues I've had lately with unwanted house guests because it's probably a pretty limited group of people that would want to hang out at her apartment anyway.

In any event, this promises to be quite a fascinating show on CNN tonight ...

Also:
Autism: Finding Amanda - Dr. Sanjay Gupta on CNN
"Finding Amanda" Review - Axinar
Transcript of Anderson Cooper 360 episode featuring "Finding Amanda"