From: Michael J. Weiss, Ph.D. March 17th, 2007 RE: So, who is the “low-functioning” one?

Have you seen Amanda Baggs’ videotape http://www.youtube.com/watch?v=JnylM1hI2jc at YouTube? It’s a brilliant home-made autobiographical performance-art-piece that Ms. Baggs seems to have written, directed, produced, shot, edited, uploaded and marketed entirely alone. I became aware of her like many others, through the Sanjay Gupta interviews on CNN. http://www.cnn.com/HEALTH/blogs/paging.dr.gupta/2007/02/behind-veil-of-autism.htmlThe little glimmer of her life that comes through these pieces is compelling in its own right. Seeing a person like Ms. Baggs – referred to in the CNN news pieces as being diagnosed with “low functioning” autism –  communicate through typing is remarkable. But what is easily lost while watching this astonishing piece of self-expression is the cinematic genius that would go into this remarkable bit of video. This is a form of art that we expect from an Andy Warhol or Laurie Anderson. Because most people will simply be surprised by non-verbal Amanda’s ability to express herself through the typed word, they will miss the Picasso-esque orchestration of multimedia expression. Stop reading my drivel now and go meet Amanda Baggs. http://www.youtube.com/watch?v=JnylM1hI2jc We can meet back here in a bit more than 8-minutes and 35-seconds. See you then.
Hi! Are you back? Did you go see Ms. Baggs? Were you affected the way I was?
I cried as I watched this mini-movie realizing the layers of genius that will be ignored by most “professionals.” God knows that Amanda is now anything but ignored. Take some time to read the comments and videos that have been posted by a range of humanity at YouTube. Google her name and watch the vast activity she has stirred up. Overnight, more people have listened to Amanda Baggs than will listen to a Simon Baron-Cohen (University of Cambridge in the UK) or Fred Volkmar (Yale Child Study Center) in their life times. But, I wonder if NIH will give low-functioning Ms. Baggs some research dollars akin to the $3.6 million given to Volkmar. I wonder if we will see Amanda’s name related to anything more than “hyperlexia,” which has been a favorite Volkmar observation. http://www.blackwell-synergy.com/links/doi/10.1111/1469-7610.00193/abs/ How will Baron-Cohen’s “Mindblindness” http://www.amazon.com/Mindblindness-Essay-Autism-Theory-Mind/dp/026252225Xdescription hold up in contrast to low-functioning Ms. Baggs account of other peoples’ minds? No Amanda won’t be ignored, many of us are paying attention. The question is can those of us paying attention allied ourselves against the tide of disbelief in the so-called scientific community?
I’ve shed tears about all of this for many different reasons, and now for many different years. Some of the tears were the same as those I shed when CNN aired “Autism is a World” http://www.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/sue/notebook.htmlback in May, 2005. I cried because by 2005 I was jadedly convinced that Sue Rubin, like Amanda Baggs now, would be rejected by the “autism establishment.” Sue, like Amanda, is considered another so-called “low-functioning” person. Sue, like Amanda, starred in, wrote and co-produced the CNN-Oscar-Nominated documentary with Gerardine Wurzburg (famed Oscar winner for “Educating Peter” and producer of “Graduating Peter” http://www.hbo.com/docs/programs/graduating_peter/interview.html ). The inevitable ignoring of these “low-functioning” people makes me weep for our collective ignorance.
In these two women we are looking at faces of humanity that we don’t understand. But, rather than courting relationships with these wonderful individuals, and doing the due diligence to understand what they may be able and willing to teach us, the conventional autism wisdom is that these people don’t even exist. Little itty-bitty thinkers like Gina Green, a behaviorist and outspoken naysayer of Facilitated Communication (FC)http://www.cnn.com/CNN/Programs/presents/shows/autism.world/fc/studies.html residing at San Diego State U., exemplifies the “establishment.” http://www.washingtonpost.com/wp-dyn/articles/A42582-2005Feb21.htmlHer decree is that we ignore, or better outwardly reject people like Sue Rubin. In the link to the WashingtonPost.com interview, Dr. Green is described as being “outraged” that the May, ’05 CNN documentary, Autism is a World, doesn’t address the controversies that have swirled around the use of Facilitated Communication. From the article, Green is quoted: “To make a film touting the method without “even a hint, much less a disclosure” of all the information disproving it “is appalling,” she said.” Of course, the eminent Dr. Green seems to be ignoring the fact (or should I call it “data” Gina?) that Sue Rubin largely types independently. She will still require physical assistance ala FC when stressed, but she is her “own author” by the most profoundly conservative critiques (that is, those that still adhere to scientific rigor). Yo Gina, the movie was trying to give you a glimpse of Sue’s life. It wasn’t a treatise on FC. You can do that when you make your autobiographical film. But, understand what the eminent Dr. Green is trying to have included. Gina wants proof of your “lying eyes.” We need to include proof that FC is a total hoax, so that when you watch Sue Rubin independently expressing herself, we can say “oh, it must not be happening. It’s a hoax.”
But then, why would I try to argue with the eminent Dr. Green. Why can’t I just embrace that Sue Rubin is a hoax. I guess Ms. Baggs must be a hoax. I guess the “low-functioning”-boy-wonder-Indian-poet Tito Mukhopadhyay http://www.voanews.com/english/AmericanLife/2007-02-20-voa41.cfmis a hoax as well (oh, oh, somebody better get to the Wikipedia people about their Tito portrayal and inform them of his hoax status). http://en.wikipedia.org/wiki/Tito_Mukhopadhyay
By denying that Rubin’s, Baggs’ and Mukhopadhyay’s exist, we preserve our order. It maintains our comfort in what we “know.” It allows us to continue using langauge like “low-” and “high-functioning,” “retarded,” and “Theory of Mind.”
By accepting Sue, Amanda & Tito as real people, we jeopardize our belief in the three basic criteria of autism as “core deficits” of the disorder. If we lose those three cherished definitions of autism, we compromise the basic premises that our precious tests like the Autism Diagnostic Observation Scales (ADOS) are predicated on.
By finding more people that just don’t support our traditional theories of autism and mental processes, we may discover that our beliefs about measuring cognition may be all wrong. By demonstrating that these individuals can communicate through “hyperlexia” (how Amanda is reported to have begun) or FC (Sue’s road in) or just dogged education on reading and writing (Tito’s mom Soma gets credit for that) – ironically – means that both ABA Verbal Behavior experts and Augmentative & Alternative Communication (AAC) experts (do you know they largely hate each other) are both widely wrong about many important “facts.” Psychology as a testing industry will come to be mightily wounded by the existence of these remarkable individuals. After all, how did our IQ tests miss the intellects of these people, resulting in descriptions of “low-functioning” (which, used to mean mentally retarded)?
By demonstrating that these low-functioning perspective-vacuous individuals are witty, charming, intuitive, empathic and can spell-your-pants-off, may mean that the huge sums of grant money given to people like Simon Baron-Cohen and Fred Volkmar may have been money poorly spent. We may discover that Baron-Cohen’s entire rap on autism-as-a-lack-of-perspective-taking-disorder may be wholly wrong. We may discover that Volkmar’s revelation that 5-to-10% of ASD individuals are “hyperlexic” http://www.blackwell-synergy.com/links/doi/10.1111/1469-7610.00193/abs/aren’t. Rather, he missed the point; they can read. After all, they are this generations voice of proving “low-function.” Is this how we want to spend our grant money?
What does it sound like to have a low-functioning person who lacks the brain modules to understand other people’s thoughts? Hmm, let’s listen to Amanda Baggs. She rhetorically wonders in her video masterpiece:
“It is only when I type something in your langauge that you refer to me as having communication. I smell things. I listen to things. I feel things. I taste things. I look at things. It is not enough to look and listen and taste and smell and feel, I have to do those to the right things, such as look at books, and fail to do them to the wrong things or else people doubt that I am a thinking being and since their definition of thought defines their definition of personhood so ridiculously much they doubt that I am a real person as well. I would honestly like to know how many people, if you met me on the street would believe that I wrote this? I find it very interesting by the way that failure to learn your language is seen as a deficit but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than admitting that it is themselves who are confused not autistic people or other cognitively disabled people who are inherently confused.”
You see we have a lot of reasons why it’s just too much of a hassle to see Amanda Baggs. There is too much to lose if we acknowledge Sue Rubin. The Tito’s of the world are better thought of as freaks of nature, you know, they are “1 in a million”, which means “not real.” To hell with them. They don’t exist. If they existed, it might mean that they are “high functioning” and I am “low functioning.” That can’t be. So, pretend that they aren’t there. Forget I said any of this.
Next topics: Autism is NOT a Spectrum Disorder

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