Saturday, April 11, 2009

Autism Is A Neurological Disorder Not A Culture or Shared Communication Style

When Neurodiversity blogger Dora Raymaker at the Neurodiversity (Autism) page of Change.org says "we autistics" and pretends to speak on behalf of severely disabled autistic persons she doesn't know, and has little in common with, she is misrepresenting her authority to speak on their behalf. Autism is a spectrum of neurological disorders distinguished by very substantial variations in intellectual and communication abilities.

Dora Raymaker in Deaf Culture, Autistic Culture, and Language refers to what she calls "autistic communication styles" and "autistic culture":


While autistic people don't have a formal language like ASL, we do have some shared communication styles, shared ways we use language or other types of communication, and some shared preferences for communication styles that are different from other groups of people. In terms of community-building, someone once said to me "the Internet is to autistic people what sign language is to deaf people."

Some severely autistic persons, unlike Ms Raymaker, have very limited communication skills and very limited understanding of language and abstract concepts. She has no legitimate basis on which to speak for them or to claim that they all share a common communication style or are part of an "autistic culture".

Dora Raymaker is misrepresenting autism disorders to the general public. My son has a serious neurological disorder, Autistic Disorder with profound developmental delays. He requires 24 hour adult care. He is severely autistic. He is not part of Dora Raymaker's "autistic culture" or "shared communication style". And Dora Raymaker does not speak for him.




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13 comments:

Stephanie Lynn Keil said...

It amuses me that people with HFA/AS often pride themselves on not being socially aware enough to pick up on "NT" trends but happily pick up trends in "autistic culture" such as slang (aspie, autie, curbie, etc.) and fashionable social movements ("Neurodiversity").

Autism Reality NB said...

That is an interesting point Stephanie.

farmwifetwo said...

They do like to make their own "club".

I have NO use for them.

The only agenda they have, is their own and I'm not certain what it is.... then again I'm not certain they know either.

S.

bullet said...

Hmmm. Actually I'm fully aware of a lot of social trends (eg facebook, bebo, concept of celebrity gossip, interest in fashion). It's just I have very very little desire to take part in them myself. I like what I like and if it turns out to be the same as what other people like, fine. If not, that's still fine.

Stephanie Lynn Keil said...

So, a bunch of autistic people are apparently able to form their own "community?"

Again, I still don't truly understand and this goes back to something I said much earlier: "autistic community" is an oxymoron.

In order for a "club" to be formed a group of people must be able to understand highly complex social interaction and social rules; having similar interests isn't simply enough because that is obviously not what Neurodiversity is.

Neurodiversity's social structure is quite complex, which makes me wonder how many of them truly have autism and how many are simply jumping into the bandwagon because it is popular.

At the same time many in the ND movement don't really know what they are doing and simply "follow" a "ND" leader (Amanda Baggs, Donna Williams, et. el...all people who may very well be frauds.)

If the fake autistics or subclinical Asperger's people weren't around to order the HFA/AS followers around would this "ND" movement even exist? Probably not. "ND" mostly consists of a few very strong leaders and a bunch of followers that don't know what's going on and are taken advantage of by people with probable personality disorders.

Marius Filip said...

As a software engineer, hence a person who works with information (in it's most "pure" form, and I mean by that the bits of information that computers work with) I can surely say that the idea that autism is "a culture" is pure rubbish - at least from an informational point of view - and I would like to develop a little on this topic.

A culture, in order to be a culture, always requires INFORMATION that is shared among it's members (orally or written) and is passed down from one generation to another (orally or written).

A culture requires customs, habits, rules of good and bad behavior, a system of values shared by a community - and so on and forth. All this is INFORMATION - shared, stored and processed orally, in writing or by other means.

So, indeed, we can talk about various basis for culture: from ethnic (the Romanian culture, like mine), to regional (the Balkan culture, that Romanians belong to), to continental (the European culture), racial (the culture of black Americans, for instance) or even based on certain disabilities (culture of blind people or deaf people).

Why can all these groups of people construct cultures, apart from sharing a common space or a common characteristic? The true reason is that these folks are capable of processing the very basis of culture which is CULTURAL INFORMATION.

Even in the case of some impairments this still holds true: the blind (who can communicate through Braille) or deaf (who can communicate through ASL).

Now let's take a close look at people suffering from autism - the so called basis for an "autistic culture". Can people with autism store, process, organize, share and transmit information - within whatever community or from one generation to another? The answer is crystal clear: NO.

There are people suffering from severe autism who cannot process information, plain and simple.

And there are people suffering from milder forms of autism, who can communicate and who can process information, but who do it in such a convoluted way that the awkward way to process information is the very basis of their impairment (like is the case with Asperger's).

So, where's the basis for "autistic culture"? There is none, there cannot be any, since the very members of the "community" lack the basic means to sustain the core elements of the communal construction which is a culture.

Autistic culture? Let us invite some of the most vocal proponents of the Neurodiversity crowd to "make culture" with the most severe autistics, the ones who do not do much more that rocking back and forth or spinning a string for hours.

Amanda Baggs, in her "In My Language" video, alleges that the "eeeeeee" sound she emits is "language". OK, what's the meaning of it? How many kilobites of information can we extract from it? Can we store "the discourse"? Can we translate it into another form of information representation?

The answer the NO to all these questions, therefore that "eeeeeee" is no language at all, but a sensorial feat which is produced by her neurological condition named autism.

As of the computers and the internet, this sustains wonderfully what I am saying. The computers and the internet are convenient for the high functional autistic people especially because these people lack the ability to process other kind of information, which is socially relevant - such as reading face expressions, or understanding jokes, or getting figurative language.

Is the internet the "language for autistic people"? No, again, because using a computer still requires some cognitive abilities which the most severe autistic people lack. So, back again, there is no culture, because there is no information processed communally - at least for a large chunk of the "community".

So, there is no "autistic culture" and there is no "autistic community" just as there is no culture or community of other cognitively impaired people (such as people with Down syndrome) for the simple reason that a good part of those people must rely on OTHERS to fulfill their cognitive needs in order to survive.

Therefore, they cannot construct a culture of their own, as the blind or the deaf can.

Sandy said...

Harold -- I am going to say something quite politically incorrect here.

When I was in private practice (as an educational consultant/psychologist), once a child or youth was diagnosed by a pediatrician, neurologist or neuro-psychologist as having ADD or an ASD, I would be asked to check out if they had learning disabilities and what learning strategies or aids would be helpful for compensating for those difficulties.

What I found was that the medical diagnosis was primary and always affected the individuals' reasoning and abilities to attend, remember and communicate -- in some way and to some degree.

In fact, I cannot think of a single time (whether it was me or a colleague) when someone would have an ASD diagnosis and not also have some type of learning problems.

Meaning, to be diagnosed with autism means the person WILL have some type of attention, cognitive reasoning or information processing discrepancy -- which is not simply a cultural or shared communication style.

So, when "high functioning" autistics write or say something about autism, their views are actually a reflection of their own neurological disorder and learning disabilities.

Stephanie Lynn Keil said...

Yes, people with HFA/AS don't want to take part in "NT" social trends but they will happily take part in "autistic culture" trends. Hmmm....

And thanks, Marius Filip for putting what I was thinking into words; verbal language is a weak point for me.

lurker said...

I think ND's emphasis on them having their own culture and other such things is used by them as a cover for their basically unlikable agenda, which is that of keeping mental disabilities in place. I think the very HFA use that "common culture" argument to justify trying to speak for and trying to decide the fate of the LFA, and to exclude the countering opinions of those who aren't autistic who try to really look out for the interests of the LFA.

They seem against treatments/cures to even just greatly increase the ability of the LFA to make them as non-impaired as the very HFA who oppose it, probably even if such treatments still left those receiving it as seemingly autistic as the very HFA.

I'm disturbed by ND's lack of concern that most on the spectrum don't have reliable ways of communication to participate in their "culture" and to make shared decisions.

bullet said...

"And thanks, Marius Filip for putting what I was thinking into words; verbal language is a weak point for me."
Well I hope you don't mind me saying this, but in terms of writing on the internet you appear to have excellent command of the English language. I hope that my son Tom can write as well as you do when he gets older.

Marius Filip said...

For Stephanie Lynn Keil: I am just trying to convey a point of view that I believe was less considered.

Reading the commentaries for the "In My Language" video made me think of that. I admit that, when I first saw Amanda Baggs' video, I was a little bit lured to consider autism as "the other universe".

It was the merit of my wife who made me think twice and come back to common sense: the "autistic forms of expression" meaning rocking, biting, scratching surfaces, wetting fingers in water and "eeeeee"-ing form a language as much as the vivid images appearing during sleep form a real world.

I intend to let Mrs. Baggs about this point of view some time in the future, as well - although I am convinced it will be to no avail.

Anonymous said...

I believe in an Autistic culture because I am an Autistic person. It's the only culture that makes any sense to me. It's the culture that accepts me and has given me guidance. To me, being Autistic means that I see the parts before I see the whole. It means that my comprehension is superior to my performance. It means that my physical senses are unusually vivid. The internet has put me in contact with others who think the way I do. I need this because it's difficult to be different. It's painful to be thought of as not human. We've been bullied and often unloved. Yes, we have very real challenges and need a lot of help. Yes, there's anger. But also humanity. These are your children.

Marius Filip said...

Dear Anonymous

What you experience is not a different way of being, it is the result of a brain disorder.

Autistic culture does not exist because autism attacks the brain, our organ responsible for thinking - and people need thinking for inter-relation and communal structure.

If you've been bullied and treated as a non-human, THIS is what you have to fight, among other things.

Seeing the parts before seeing the whole is not a superior or an alternative way of thinking, dear Anonymous. It is a defective way of thinking.

"Seeing the parts" means difficulty to conceptualize and to maneuver abstractions. And these made the human mind so successful and made our species thrive.

I have a major in Artificial Intelligence and I am quite familiar with how scientists try to emulate the human mind. Believe me, making something be able to understand the whole is much harder than making it grasp the parts.

Sorry, the autistic mind is (more or less) disfunctional because of the disorder in the brain produced by autism.

People with autism who succeeded, succeeded not because but in spite of autism.