Aspies For Freedom

Autism vs. Autistic

     As a journalist who has written on Asperger's and a parent of a child
diagnosed with Asperger's and PDD-NOS, I'm confused by your stand on the
diagnosis of Asperger's.  My understanding is that Asperger Syndrome is
indeed a form of autism, albeit high-functioning on the spectrum, however I
gather from your writing that you believe Asperger's is completely separate
from autism.  Does that mean you don't regard autism as being a "spectrum"
disorder?
     - Kristin Park

     My child's doctor has told us that he has Asperger Syndrome, which is
on the autism spectrum. Doesn't that mean that he is autistic?  That is what
we were told. Are you saying the doctors are wrong?
     Connie Post

    L.S. Responds:  "Autistic" has only recently become an informal
shorthand term for having an autism spectrum disorder, ever since the
invention of the ASD term just over a decade ago. This makes much sense as
it is far easier to say little Johnny is "autistic" rather than try to fully
explain to an endless stream of family members, neighbors, teachers, etc.
that Johnny  has Asperger Syndrome or Fragile X or Rhett Syndrome or PDD or
PDD-NOS. This is true especially with the labels Pervasive Developmental
Delays and PDD-Not Otherwise Specified (PDD-NOS), which are little more than
expert gobblygook for "the kid's got problems and we're not sure how to
label them, but it's not bad enough to rate special intervention". "He's
autistic" cuts through all that.  The problem is that none of those ASD
labels come close to the disabling realities of clinical autism, when using
"autistic" for more than shorthand.
     Calling anything on the autism spectrum "autistic" waters down the
meaning of autism, much to the detriment of those with real, profoundly
disabling autism.  How can advocates of children with real autism convince
the public to spend $60,000 a year on early intervention for autism if the
public is lead to believe that autism is little more than having quirky,
"nerdy" personality traits?  It is trendy in some circles to refer to
historical and current social oddballs like Albert Einstein, Bill Gates and
Michelangelo as "autistic."  If that is what autism is, then why should
anyone spend a dime trying to fix them?  Answer, no one should.  But those
famous people, or even "Silicon Valley" engineering types (the "Geek"
syndrome), have little resemblance to anyone with real autism.
     The public needs to understand that autism is a severe disability
worth treating and curing, if possible.  Everyone with a diagnosis on the
autism spectrum deserves to have the treatment, care and support appropriate
to their situation -- but not at the expense of one another -- and this our
true advocacy.  The ASD "autistic" usage cheats people with real autism.
These are people, children who have been cheated enough already.  Those
self-labeled autistic advocates (to whom this is mostly addressed) without
clinical autism ought to shed their "autistic" dark sunglasses, canes and
tin cups to those truly blind with autism [metaphorical, not literal
expression] -- beyond informal shorthand usage.  -Lenny Schafer
* * *

Well, at least he's honest in saying that there is no scientific backing to "Schafer Autism" and it's all just to get them more money  :roll:

Shafer says "If that is what autism is, then why should anyone spend a dime trying to fix them?"

FIX!!!??? GRRR  :evil:  :evil:  :evil:  :evil:

It is trendy in some circles to refer to historical and current social oddballs like Albert Einstein, Bill Gates and Michelangelo as "autistic." If that is what autism is, then why should anyone spend a dime trying to fix them? Answer, no one should. But those famous people, or even "Silicon Valley" engineering types (the "Geek" syndrome), have little resemblance to anyone with real autism.

He is trying to convince the world that we do not exist so he can leech money out of parents and universities without us Aspies getting in his way of a cure. He is just one of many who will lable us as pretenders rather than acknowledge our existence because we stand in the way of people like him making a lot of money out of our lives and ultimately, deaths. This is nothing that I would not expect of people like him or the people at CAN or NAAR who simply want rid of us because it makes their own lives easier. The Nazis felt the same way about the Jews so they pumped out lie after lie about them via their media propaganda machine to get people to believe (and support) lies about innocent people, just as the new bunch are doing to us. If they can convince people that we don't exist we will lose our voice on all matters concerned. That is their goal - to silence us.

That is not strictly speaking true.

He merely does not accept anyone but the most "severely affected" as "real autistics", similar to how some do not accept anyone but the "non-impaired" as "real aspies". (I disagree on both counts)

I don't think his views would be all that different from what many autistics themselves say, if he worded things differently.

Rather than telling the majority of "too functional" (in his view) autistics that "they are not 'real' autistics" (because if they are autistic, he fears people will not believe that there are some autistics who do need help and support), what he seems to be saying is that they are "not disabled enough to need any intervention".

He is merely re-defining autism as "only the most severe cases" since otherwise, they wouldn't get the cash they are after.

If it wasn't for the money, and for buying into too many empty promises of "cures", I am not so sure if there were that many differences between what autistic advocates are trying to do (get people to accept that for the most part, autism itself does not need to be treated, only some aspects of it if they cause problems for the person, e.g. anxiety, sensory problems etc.) and what Schafer is trying to do, but going about the wrong way (e.g. trying to point out that some aspects of autism do require treatment).

Yes I think Schafer is misguided in defining "Autism" only as those aspects that do cause problems, but to be honest I also think it is misguided to try and define "Autism" as only those aspects that are positive. This is the real world, and there is no such thing as a perfect human being - be that NT or autistic.

I have read too much crap online from people who have more influence than I dare think about, attacking any and all position that acknowledges possible problems autistics may experience. I'm sorry but just like NTs, there are certain things difficult for us and certain things we are better at.

Attacking positions merely because they do not deny the real problems that do exist for many people* (by talking of possible experiences, telling what some have reported and ho others experience things differently, and providing explanations to help NTs understand how we work and why some things they do hurt or offend us), is not helpful and only plays into the hands of Mr. Schafer by portraying any higher-functioning autistics as superiorist and snobby.

*as opposed to Schafer's position of defining autism as solely those problems, and anyone who is not severely disabled "cannot be a 'real' autistic" - I have no problem with attacking that view.

I think his view is dangerous, as we are all human and have differing experiences throughout our lives, at some times we may feel we can achieve much, and at others find everything a struggle.
Asperger's is on the spectrum, and people abilities are not set in stone as a certainty.
Patricia Howlin's studies have shown that some regress in particular areas, and may get stronger in others. Schafer chooses to put aspies in an elitist position, of constantly capable. That is false.

I feel that he is motivated by spite to a certain extent, his attacks on particular members of the autistic community show that.

Yes, and he presumes autistics with severe difficulties to be constantly incapable, which is also false.

He has a valid point in saying that benefits and services for disabled autistics shouldn't be reduced because of the expansion of the diagnostic categories to include non-disabled people.

Too bad he's being such an adversarial jackass about it.

Yep, agreed, it's way too simplistic. But then his views seem mainly formed by what backs up his demands for funding, so I don't think we can expect him to have a realistic, sensible view with that agenda, really.

I must say that I can see why he would perceive some advocacy as "elitist", simply because some things are written from the PoV that people who mention "difficulites" are automatically "the same as those who want to fix and cure us". (Because that is what many expect, because in their experience, being told one has a difficulty is equal to being told one is worthless, regardless of what the speaker meant to say)

...Which in turn makes it look like advocacy is trying to say that autistics never have any difficulties (because views that state such are sometimes condemned very vocally by autistic advocates, even if they ALSO mention the positives and come from people who are very hurt by accusations of anti-autistic views, often because they themselves, or a close relative, is on the spectrum).

...Which in turn makes it look like they are saying autistics, since they can't have difficulties and do not accept that they have problems, are "better" than NTs (since everybody has skills and deficits, so if 1 group says "WE do not have any deficits", that puts them above the rest of humanity)

...and after not too long, you have two groups that effectively have a similar view (that many autistics neither need nor want to be treated for anything that doesn't bother them or cause them distress) at each other's throats, all because the more extreme voices at either side are irrationally generalising left, right and center...  :roll:

While I do know that there are people who do have "elitist" views (not because of what I read into their words, but for openly being told so), they are a very small minority, and to say that all autistic advocacy is "like that" is a very dirty cheap trick to get them "discredited".

On the other hand though, while some people really do think autistics are worthless and should all be aborted and "made normal at any cost", this simply is not "what everybody thinks" and while there is a lack of information out there, it certainly does not appear to be anywhere close to the views of a large proportion of NTs out there.

"...Which in turn makes it look like advocacy is trying to say that autistics never have any difficulties (because views that state such are sometimes condemned very vocally by autistic advocates, even if they ALSO mention the positives and come from people who are very hurt by accusations of anti-autistic views, often because they themselves, or a close relative, is on the spectrum)."

I don't see autistic advocates doing that, I think its a myth. I see some aspies doing that, but not in relation to advocacy.

I think his biggest mistake has been that he has used illogical and overgeneralised arguments to back his views up (that alone does not make him nasty, similar problems in perspective-taking are common in autism also, so who knows? It wouldn't be the first time that the parent of an autistic child shared some traits, right?), and has used them to "pick on" people who, according to his own logic (which is deeply flawed), ought not to be able to be capable of defending themselves, and some of whom are so similar in way of cognition and argumentation that a few thoughtless remarks on his behalf have earned him a never-ending slanging match.

Well, it does not have to be done directly within such an article, these can usually be quite well-edited, backed up by quotes and references etc. But that doesn't stop some people from showing their true colours when exchanging views personally.

I have been accused of a great many things (including things Schafer is accused of, by the same person) for daring to talk about difficulties in autism, for daring not to swallow blanket statements without checking the facts, and for defending a friend when her own work was portrayed as nothing short of "defamatory against autistics"* so like it or not, people and views do get attacked and denounced, among others by "advocates", because they point out that difficulties can exist, or for making suggestions how to deal with such difficulties.


Also,  there is no "official" post of autism advocate, and as such it is quite difficult to keep strong personal views completely separate from advocacy. Extremist views are often those that come across the strongest on a forum, the ones that leap out. I doubt that many NTs who read a few posts on AS forums would bother to check whether such isolated views actually represent overall sentiment in the AS community for example, not if they are unlucky enough to come across some very strong or rude posts that "put them off for good".

Also, since so many people post online about things they may or may not actually voice or do something about "in real life", how is Schafer or anyone else to know whether someone who calls for action on the Internet is officially (in real life) doing the same, or whether they are simply stating their opinion to a bunch of friends?

* a misinterpretation that, I think, arose because someone posted a link to the middle of a series of articles, thus landing them smack bang in a discussion of people with autism who experience visual and auditory difficulties, rather than the introduction which puts across the importance of trying to understand, rather than fix, autistics. Unfortunately, one glance at the article about visual problems and the stamp "this person thinks we are all like this, we are all defective and need fixing, with expensive lenses and equipment" was on there, an nothing will ever budge it.

But that is the same as saying that if NTs commit a violent crime, then all NTs are violent (in Schafer's logic I mean).
Some aspies at times may make comments that are negative and elitist, but NTs make negative comments too, it doesnt mean that they are representative as a whole.
I think Schafer is being very selective if he chooses to see reality that way.

"Well, NTs rarely get together and "discuss what it's like to be NT", or try to "Define what it means to be NT", or have forum communities to debate "NT issues against AS issues" or decide "Who is the real NT" etc. (Although.... it WOULD be amusing....)"

They do, but they don't call themselves NTs. They do define themselves socially and compare themselves with others. They can latch onto their own social group and discuss it at length and criticize other groups in an elitist sense.
And yes it can appear amusing, have a look at this one -
http://www.chavtowns.co.uk/index.php

I have heard it used nationally.

Noetic, I rather got the impression from your post after mine that you felt I was denying that Aspies have problems and that we are all perfect somehow. I was trying to get across that message that if we are not seen as being real autistics than we as good as don't have any say on the matter in the eyes of those we are trying to get to listen to us. I have never said that Aspies are without our problems which is what had doubley pissed me off about Schafer's opinion. Well that and that fact that there is a subsonic noise coming from somewhere in the building and it's making me ill because I can't escape it  :cry: