Friday, May 07, 2010

The Amanda Baggs controversy

No links there, no pack drill.

I have been drilling down within this (what to outsiders is no doubt incomprehensible) controversy which has exploded on the autism hub.

There is, and has been for some time a lot of controversy over the veracity of Amanda Baggs.

Statement by Larry here. "I do not believe and never have that Amanda is low functioning"

Now the qualification for that statement ought not to be controversial because the definition of functional ability in autism is essentially a normalising dialogue, a socially constructed dialogue and when one withdraws ones "gaze" from autism and looks at notions of disability, impairment and difference altogether it is a nugatory or "piffling" dialogue.

I think I do need to come out here, and state what is, what I have said privately in other fora:

I first encountered Amanda in early 1999. You could say that was an exciting time as I was discovering a lot of things then with regard to this autism which I had been "framed" with.

I think the major condemnation I have seen against Amanda is a number of previous tentative diagnoses including (yes wait for it) the unmentionable Schizophrenia.

Well lets get real folks. Those who tend to condemn in all probability have never had any contact with mental health services, they do not know even what "diagnosis" means or what many psychiatric "survivors" will tell you, that you can see a psychiatrist who will diagnose you with x and a month later you can see another one who will rediagnose you with "y"

Yes it has happened to me too.

There is a lot of stuff out there, if you know where to look for it, that replicates what Amanda had to say prior to my first encounter with her.

But then look at it properly. I am not sure what I am going to say does a lot of favours to Amanda, but you have to look at age in this. I was a teen once, though looking at my grey hair and whiskers you would find it hard to believe.

I have had the good fortune to watch other autistic teens grow up and mature.

Anybody, think about it. If you ever kept a diary when you were sixteen, whether you would want to see that published now?!

Amanda, has made some big mistakes (as I see from my perspective)  I won't go into them all, I commented at the time, Amanda is aware of what I said. Heck it is no worse than what I have said to Michelle Dawson, or Ari Neeman particularly Ari Neeman over the same naivity with dealing with the media.

Media is one of my specialties, I would know about it. I have myself been accused of not speaking to the media, but I had good reason to distrust.

Some of the fallout amongst the erstwhile autism hub involves personalities. Lets not deny. It involves those who do or do not support Ari Neeman (the young pup who ought not to teach his elders how to such eggs) or Michelle Dawson (whose knowledge of the philosophy of science is distinctly lacking) or Amanda Baggs, who came out of California where those big trees grow, need I say more (ironically)

Beyond that there are all the "ace faces" out there who might turn out to be no more than bell hops - (this is a reference to the movie Quadrophenia BTW)

It's not about personalities, it is about diversity and the right to be.

Larry Arnold is the ultimate clown king in all this. I learnt (was forced) to take that role. Licensed folly. It's a precarious tight rope I can tell you.

There are no plastic saints or Icons in this autistic world, all of us are flawed and human. There is so much crap being exchanged right now, condemnations, accusations. When it comes down to it, it is not about the bigger picture, it is about selfish perspectives and self constructed holier than thou bullshit. Yes on every side.

Who has the guts to admit it though? When we all do, then we can move on......


Clay said...

@ Larry - Good point about the teenaged fantasies. When I first read "Walden" in 11th or 12th grade, I was so struck by similarities in thinking that I briefly thought that I might have been him - reincarnated! But nah, he and I are just similar in many ways.

I haven't known Amanda quite as long as you have, only since Feb 2000. In all that I've read of her, and the couple times I've met her, I'm absolutely convinced she's autistic. She doesn't claim to be either "low" or "high" functioning, and she seems to be some of both. The thing is, it isn't open for conjecture!

It is simply not possible to diagnose or undiagnose anyone over the net, and stories from someone's past don't carry any weight with me, because they may have an axe to grind. This "controversy" is a manufactured one, put out by ignorant, arrogant, and hateful people, and that practice should not be tolerated.

I, for one, am able to admit that I've learned a great many things from Amanda, and am happy with her advocacy. She does what she can, despite many obstacles, her own, and those that others put in front of her. She deserves a lot of credit, and she doesn't have to answer to any of those hateful people who would call her a fraud.

The author said...

A good post clay.

With you Thoreau with me William Morris.

He was a complex character and no doubt. A serious political campaigner, but at other times away with the fairies with his other pre Raphaelite associates.

Indeed one wonders if there would have been the Tolkein we know, but for Morris, who translated the Icelandic Sagas and wrote fantasy fiction about "Elves"

He was neuro diverse for sure, though of course you cannot pin a specific diagnosis on him.

Someone once told me, in all seriousness that she thought I was the reincarnation of Dylan Thomas.

Timewise it almost works, boozewise - well I will say no more :)

Anyway I joined the William Morris society back in '78. I have been a member ever since, though not so active as I once was. I am sure I am remembered.

Joseph said...

I also don't think of Amanda as "low functioning" these days, but that's because I'm acostumed to the formal definition of the term as it used in the literature. I think that needs to be qualified by saying that Amanda's definition of "low functioning" (if indeed she uses that term to describe herself) might be entirely different.

What's most controversial about Amanda is probably not that, though. It's the late "regression" - which is unusual, but it does happen. She's never hidden that part of her personal history, as some would have you believe. In fact, I remember an article from way back when, titled "Help! I Seem to be Getting More Autistic!." Guess who wrote that?

Socrates said...


I have read a lot of your work and it appears to an ignoramus like me, to be first class.

I can only ask you apply the same standards to this situation and there is a great deal of information in the public domain on which to base your conclusions.

I ask you, how many times have you come across someone that has had such a profound regression in their late teens?

I have over the last decade 'regressed' through life's ups and downs, to the point where I have profound problems coping with even the simplest life-tasks.

This has include selective mutism, something called decompensatory psychosis (whatever tf, that is), fits and a lot of general bat sh t crazy stuff.

As severely effected as I am, even in my worst states, I could never be mistaken for a severely affected Kanner's Autistic.

Amanda said...

I don't use the term to describe myself nor anyone else. I have repeated this ad infinitum (good grief my entire Autreat presentation is about the messed up nature of functioning labels). What I do claim the right to do is describe myself as someone who has been labeled that (and severe) by professionals, and someone who people often look at and call that whether I will it or not and whether I argue with them about it or not. And anyone who has ever had the label applied to them has a right to say "this is what the life of someone labeled that way by others can look like" which is totally different from claiming the label applies.

And I told CNN repeatedly that I don't believe in such labels. They went and called me that anyway and said a lot of things that in fact I never remotely agreed to. Larry is right, I was very naive. I agreed to do what I did with them, and Wired, and the CBC, despite absolutely being terrified at the thought of agreeing, because I thought it would shed light on the messages of other autistic people. I had no clue on earth they would make it all about me, and twist any of my messages beyond all recognition.

I am a little surprised anyone thinks I call myself low functioning though. Not after the zillion repetitions of "I don't call myself this, I don't believe in this, this is a category I am placed in against my will and sometimes without my knowledge." I said the exact same of high functioning back when I assumed I had been called that. (But when I got my records there was no mention of high functioning and there were mentions of low functioning. I can't help this. I had no say in this.)

Much of the so called controversy (the word is manufactroversy, and it was mostly one person's design) involves putting words in my mouth and then refuting them. Most of the words put in my mouth I never said, and most of the few ones I said are being distorted to mean something I never meant. And when it's proven that I did say something, I'm accused of hiding it by writing a lot. There is no winning -- the aim of the people who created it is not to find the truth, it is to silence me whether by killing me or trying to make sure nobody will listen to me. And it's clearly about me because they don't target others with similar characteristics and histories anywhere near as much as they target me. The funny thing is none of the things I've done that they target me for wouldve happened if I weren't autistic.

So for the record I don't believe in functioning level. Except possibly one skill at a time, one point in time at a time. I don't believe in regression despite experiencing twice in my life what most people would call that. In my life, when people tell me I am low or high functioning or regressed, they are telling me which skills they value and which skills they devalue. Because during my so called regressions I have gained abilities while losing others and since people are so damn focused on speech and motor control they don't give a crap what I gained or even pause to wonder what I gained. Within the autistic community I have been one of the most outspoken opponents to the concept of functioning level for an entire decade, constantly returning to the topic because people insist on using the concept to harm me and others I care about.

Also for the record I fully admit to doing stupid things, miscalculating, being naive, etc. There's a lot I only understand after I've screwed up a hundred times or so.

Foresam said...

From living with a low-functioning autistic kid for 13 years, I could do a much better job of imitating autism with no practice. Her attempt to portray autistic stimming is very poor acting.

The author said...

Socrates - What is a "Kanner's" Autistic.

That one is a big bugbear of mine, because what is often described bears no relation to what Kanner wrote, you or I could easily have fitted with his profile. As I recall Pat Howlin goes into detail with regard to what happened to the original participants in his study, in later life.

Foresam, you don't have to pretend to be autistic, we all know that if you were to walk into Digby Tantums office tomorrow he would write you up as a case study.

Socrates said...


It's time I enrolled at Birmingham...

And yes, I agree - I could be Donald.

Foresam said...

Does Digby cure autism? No? Then he has no business pretending he knows anything about mercury poisoning misdiagnosed as autism.

Amanda said...

I didn't "regress in my late teens". I lost some skills rather slowly starting when I was about 12 and continuing to this day. The thing people most care about is speech. And that started with short periods of being unable to speak. I was sent to a neurologist and neuropsychologist about this by age 13. By age 15 it happened enough for my psychiatrist to write an accommodations letter about it and describe it in my records. By age 19 it was a good part of each day and I acquired a speech generating device. By age 21ish I had no usable speech at all. My friend Anna saw this happening gradually over time since I was 12, and so did my parents. All of them have verified this. This was never sudden, and was accompanied by increased trouble with voluntary movement of a type diagnosed as autistic catatonia by the psychiatrist who diagnosed autism when I was 14.

Losing skills during adolescence has been estimated at something like 17-35% of autistic people. As to people who have lost speech in adolescence or adulthood, Kim Duff and Cal Montgomery come to mind, one regained it the other didn't. Both have the same movement disorder and both had increasing periods of inability to speak throughout the day, and increasing trouble with voluntary movement. Jim Sinclair has the same movement disorder and while xe has not completely lost speech, it's intermittent and xe has gone through fairly long periods without it. "Mutism" can be one part of the diagnosis according to Wing and Shah, and the condition itself can be fluctuating or progressive.

But as I said, truth doesn't matter to these people. They are aiming at silencing me and I have found no matter what evidence is given, it is never enough and people will always find new things to claim are totally unique and impossible. And when the actual facts are made known, they usually flat-out disbelieve them. If given a choice between listening to those who knew me well and those who merely kept me around to bully and/or didn't know me well, they will always choose those who didn't know me well or are outright making things up. The purpose is not seeking truth, it is silencing me.

Anonymous said...

Doesn't Amanda also claim to be non-verbal? She's non-verbal but NOT LFA.

Yeah, that makes perfect sense.

Socrates said...

I think after the statement Amanda first made, she should not have to get drawn into an extended slanging match arguing the same points over, and over again.

I've just posted this comment to my own blog, and I hope it's ok to re-post it here.

It's simply that They (the hfa's predominently) have a lot invested in the idea of a lfa who is extremely intelligent and articulate and doesn't want to be cured. For almost a decade she has been their connection and credibility to the lfa part of the Spectrum.

Without her they will have to re-build their philosophy/theology/cosmology to maintain that connection to, and retain any kind of credibility with the wider world.

I think now that she has made as frank a statement as we can reasonably expect of her in the circumstances, that we all, including Foresam, let her speak freely about the issues that concern her and that we accept her on the basis of her arguments and ideas - not her troubled history.

This is however, predicated on people (particularly the shiny, happy Aspies in the Alex Plank model) refraining from presenting her as ND's token lfa.

She's said publicly and embarrassingly, she screwed-up, - and for that she deserves real credit.

It is more honesty than most of her supporters can manage.

It is now time for all of us to move on.

mike stanton said...

There is no "Amanda Baggs controversy." There has been a concerted effort by a few individuals to discredit Amanda. This has been spread over the internet and those who are hostile to the concepts of autism acceptance and neurodiversity have swallowed it whole. Others may have been taken in by it but there is no excuse for persisting in false beliefs once the truth as been pointed out, unless you are of malicious intent.

Bev said...

The Amanda Baggs "controversy" is about as meaningful as the vaccine causation "controversy." Neither has any merit. Each is supported by a band of "true believers" and a larger number of people who are quite happy to use the "controversy" as a means of detracting from the conversations that really matter.

As she said here, as she has said over and over, Amanda has not claimed to be "low functioning." Others have claimed this about her, and she can not be held responsible for that.

The fallacy of the argument is here: Amanda doesn't look like the average autistic because she does A, B and C or does not do X, Y and Z. So what? Autistic people are not carbon copies of one another, we all know that. Some of us have other conditions that effect our presentations and course of development. Same as NT's do.

One of the arguments I've heard that is very silly is, "Oh that person doesn't have autism, but a personality disorder," or "that person isn't autistic, he's schizophrenic." Autistic people can have these disorders, just as NT's can. It is very poor logic to imply that because someone fits the current DSM profile for a particular personality disorder or mental illness, that they are therefore not autistic.

And I'm not saying that Amanda has any of those conditions I've mentioned. That's really not my business, and I wouldn't presume to internet-diagnose anyone. I really hope this is going to be the last time I feel a need to talk about this. I would much rather focus on the things Amanda has written, especially those concerning the abuse of people who are different in one or more ways.

We're all neurodiverse, whether subscribing to the "ND" philosophy or not. Why so much drama about a label? The overarching theme of Amanda's work is that all of us deserve respect.

The author said...

The author said...

There are any number of controversies, as many as there are blogs.

One at the moment is whether I should allow John Best's last post through. I have decided not to, because it contributes nothing new and is an unsubstantiated supposition. One that would serve only to prolong a proxy war of the kind I am trying to avoid, having seen how destructive that can be on other blogs.

Yes there is controversy, go look up the meaning, look it up in wikipedia if you must, there you will also find Benford's law of controversy that states "Passion is inversely proportional to the amount of real information available"

Therefore more information can only be enlightening provided it is real, not hunch, suspicion, malice or fabrication.

Anyway if the point of all this is to establish that it is not OK to speculate about anyone's diagnosis on line, that should apply equally to Raun Kaufman, I have seen any number of people declaring that he was neve autistic to start with, people who support "neurodiversity" and all. That is not Ok is it?

It's not really ok to speculate about celebrities either and give them a lable they might not seek, unless we have any direct evidence that they have either self identified in public (as with David Bellamy and Gary Numan for instance) or where it is a matter of public record.

Joseph said...

Doesn't Amanda also claim to be non-verbal? She's non-verbal but NOT LFA.

Yeah, that makes perfect sense.

What autism scientists generally call LFA has to do with cognition, not speech. So yes, that's entirely plausible.