Autism Blog - Dismay at Aspie ‘hate’

15 Feb 2010

Author: Kev
Comments: 67

Dismay at Aspie ‘hate’

I read Bev’s latest blog entry bemused and increasingly dismayed. I thought (hoped) maybe she was wrong and had grasped the wrong end of the stick but not only is that unlikely coming from Bev it was wrong. She was spot on. There really were, I realised to my dawning amazement, people with an Aspergers diagnosis who were upset at the possibility of the DSM (V) placing them inside an overall category of ‘autism’. And not for any particularly legitimate reason but mostly because they didn’t want to be associated with the people who I’ve heard them describe as ‘low functioning’.

The comments I read under the story featuring Michael John Carely of GRASP for example pointed towards an internal selfishness bordering on disgust for those who already share their place on the spectrum.

A stunningly nasty comment on this blog illustrates the issue even more handily:

Medical science used to have morons, idiots and imbeciles to describe people with defective brains, but those words became pejoratives, and mentally retarded was substituted. Then mentally retarded became a pejorative, and that got switched to developmentally disabled. Many parents with children born with defective brains glommed onto “autistic” because it had more cachét than retarded or fetal alcohol syndrome or brain damaged, perverting the word autistic and turning it into a new synonym for retarded.

So I don’t want to be called “autistic”. I prefer the distinction Asperger’s brings me; that I am endowed with a different brain, not suffering from a defective brain.

The only positive thing you can say about this commenter is at least they are being totally honest. I’ve read an uncomfortable amount of comments from aspies over the last few days that skirt around the exact same feeling but just don’t come out and say it quite so blatantly.

I know for a fact that not all aspies feel like this but I think those that don’t need to follow Bev’s example and come out and say so. Loudly and clearly. I don’t believe that aspies who want to disassociate themselves from their autistic comrades deserve any part in a movement like neurodiversity. I hope, I believe, that the aspies I count amongst my friends and colleagues feel that way too.

Update
Ari pointed me towards some comforting support from ASAN on the issue:

http://www.nytimes.com/2009/11/03/health/03asperger.html?pagewanted=all
http://www.newscientist.com/article/dn18508-psychiatrys-draft-new-bible-goes-online.html?full=true
http://blogs.edweek.org/edweek/speced/

Update No.2
More blog reactions. If anyone knows of more please leave the address in the comments and I’ll add them to what I hope will be an ever growing list.

Clay – http://cometscorner-clay.blogspot.com/2010/02/true-neurodiversity-welcomes-dsm-v.html

Samantha – http://unclesamscabin.blogspot.com/2010/02/resisting-taint-of-autism.html

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Comments

67 Responses to “Dismay at Aspie ‘hate’”

Socrates
February 15th, 2010
13:36:17

Seconded – with passion.
farmwifetwo
February 15th, 2010
13:39:59

Been telling you this for YEARS!

They want to be called Aspie and known as being “autistic” but they don’t want those like my youngest to be part of their world. They don’t lobby for our children. They don’t lobby for the adults. They don’t CARE… YET, they are the loudest voice b/c they are verbal.

I have hopes it’ll get these people, who don’t need the dx for services, off the spectrum once and for all. I also hope it’ll get rid of the self-dx’d crowd who won’t believe they are simply shy, have social anxiety or OCD but want to belong to an elite cutsie club.

I have NO issues… none at all about what is considered autism and who gets services if they are required. I have one on either end of the scale. One that before too long will no longer require the services, and one that will always. It’s the elitists… the ones that don’t need it… the one’s that compare themselves to historical figures… that need to go. They don’t help the rest of us.
Zach
February 15th, 2010
13:49:55

I just read a similar comment and blogged about it myself. I was quite disturbed by it. http://www.aspieweb.net/asperg.....osis-hate/
LAB
February 15th, 2010
14:07:59

This has been the most unexpected, shocking development of late. What’s funny is that some of these types of commenters don’t seem to realize that there are many out there who think an Asperger’s diagnosis means something entirely different from what they think it means. Some of these “Aspies” seem to think an AS label means “I’m different in a good way, smarter than you, better than most,” but plenty of others see it as meaning “spoiled brat” (in a child) or “jerk who thinks the world owes him a living” or “odd duck who got through life just fine and is now acting like he’s disabled.”

I’m in a local Asperger’s group and, believe me, quite a few of them (the adults and the parents of kids) are grousing about this change. The parents seem to think their children will suddenly be put in classes with all and sundry special ed kids, lumped in, not treated as individuals, etc. But their argument assumes that “autistic” kids DO belong in classes with all and sundry special ed kids, lumped in, not treated as individuals…
Laurentius Rex
February 15th, 2010
14:35:15

Stepping back from my own embeddedness in this phenomenon, and my own opinions regarding it I can see from a sociological and disability studies perspective what is happening, and understand in a way that all those disgruntled “aspies” are part of deeper pattern of ingrained prejudice stemming ultimately from the medical model of disability. Those who introduced Asperger’s syndrome to us as a diagnostic alternative, rather than just a research position have a lot to be responsible for.

From the beginning it was envisaged in terms of being a lesser stigma for ‘more intelligent’ and ‘self aware’ individuals on the autistic spectrum, so it is not surprising really if it has had this result.

In terms of identity politics, it chimes in very much with something called the heirarchy of impairments, which also has it’s equivalent in race studies, with the attitude of those people of lighter pigmentation to those with darker, therefore being closer to passing in ‘white’ society.

Another problem is that I would suppose it is mostly younger people protesting, not those like myself who have seen other diagnoses come and go.

It has to do with the way diagnosis has been imposed in the first place. I have met many young people who have been diagnosed in there teens as a result of school failure, disciplinary problems etc. Some of these people have felt rather resentful of having a lable slapped on what they have seen as the school responding inapropriatly to there percieved normality.

It’s not surprising that an urban mythology of superiority can be built around this in order to preserve ones self esteem in adversity, in a way it is just team loyalty. (never mind we can see where an excess of zeal in that gets you)

I suppose in a way it all ties in with the notion amongst revisionist Marxist of the Frankfurt School as “false consciosness” or what educational researchers have refered to as the hidden curriculum of schooling which is the socialisation of individuals according to percieved categories of social worth.

So this prejudice is a monster, but let us not see the monster as a scapegoat ourselves either, let us realise the insidious social forces that created it.

It really behoves us who can take a long view of all of this, to try and be a bit more forgiving of those who get it wrong, since they are still our neurodiverse kin, even if we disagree with them.

We need to take the role of educators in order to combat the prejuedice.

So I say, hey I don’t give a monkeys if the diagnosis is Autism, Asperger’s or some new word they have not invented yet.

I feel no different and I am no different as a result of it. I stand in the same relation to the whole spectrum as I ever did, and the shame is not mine, it is the shame of a society that measures worth by certain concepts of normality and gives empty praise to those who come closest to it, never forgetting still to damn them for not being normal no matter what.
Clay
February 15th, 2010
14:39:00

@ Kev – I dealt with the subject too, the same day. Sorry you missed it.
http://cometscorner-clay.blogs.....dsm-v.html
Kev
February 15th, 2010
14:51:13

And thank you Clay. I’ll add your post to the list I got from Ari :)
Heather E. Sedlock
February 15th, 2010
14:54:19

I haven’t blogged about this issue and yet it does concern me because I am diagnosed (by a neuropsychologist) as having Asperger’s syndrome. My oldest has it as well and my youngest son is diagnosed with PDD/NOS.

I think I finally have identified my feelings about the changes: relief.

I am RELIEVED that I will no longer have to explain what diagnosis each of us has. I can simply say we all three have autism. Since, we all three have autism.

However, I do, conversely, understand the fact that the person has come to feel that being “autistic” is the new “retard” and I did blog about that some time ago (heatherbabes.autisable.com).

And my observations weren’t from Aspie elitists or NDers but from Neurotypical people using it as an insult (the term “autistic.” It’s bothersome to me because I do not think ANY label needs to be used as an insult.

To me, that has always been 2 separate issues but I see now that they are meshing. Sadly.
Winnie
February 15th, 2010
15:32:57

I was diagnosed as an “Aspie” in college and while I’m sad to say there was a time when I might have resented being classified with “lower functioning” autistics, I’ve learned to become comfortable with the fact that I’m on the spectrum. (Attending Autreat and meeting so many different people on all points on the Spectrum made a big difference.) I look upon this change in diagnostic criteria as being a good thing so we members of the community don’t create false divisions among each other.
Samantha
February 15th, 2010
17:39:50

I’m none too pleased (and not entirely surprised) with the willingness to embrace the stereotypes of autistic individuals by autistic individuals myself. My two cents are here, http://unclesamscabin.blogspot.....utism.html.

I’ve been thinking that the best that can be said about the situation is that autistic folk aren’t immune from the same unfair prejudices that assail “normal” folk.
Nostrum
February 15th, 2010
17:44:42

I recently took my older for neurological evaluation. She’s got a speech delay and ADHD, but the neurologist also spoke about possible Asperger’s. She can’t have AS because the speech delay by current DSM definition means she doesn’t qualify. However, it’s become shorthand for “Not MR,” so rather than suggest mild autism, the talk was all about Asperger’s.

And I think that’s where parents and adults are getting their concern. The diagnosis is somehow reassuring and easy shorthand. Oh look, my child is just quirky nerdy and needs a few social pointers. Not like those OTHER kids in the special classroom over there… Not that that’s the reality, but that’s the perception.
Tam
February 15th, 2010
17:45:16

“I also hope it’ll get rid of the self-dx’d crowd who won’t believe they are simply shy, have social anxiety or OCD but want to belong to an elite cutsie club.”

lol self-diagnosed but I never wanted to belong to any club. I simply don’t want my life derailed by seeing a shrink for a diagnosis I don’t really need to get by. I think this particular comment shows just as much prejudice as the blogger feels others are. A lot of us got to our adult years before finding out that there’s a diagnosis that explains all the crap we went through as children/teens, we shouldn’t be punished now for making it through without the diagnosis.

The problems are on both ends. I think the single diagnosis might help to bring people together somewhat, but in the end we’re still going to have people on one end of the spectrum playing elitist because they think they’re better than people who feel autism is a disability, and people on the other end who think that anyone who is capable of social interaction doesn’t really belong in the first place.

The group I think will have the biggest problem with this change, though, is not those who have considered themselves Aspies… it’s the ones that consider themselves “high functioning autistic”, who I’ve seen get VERY angry with anyone diagnosed with Aspergers trying to claim they’re similar.
VAB
February 15th, 2010
18:23:11

I think it is possible that some of the folks who have been saying hurtful things have not thought out what they have been saying very carefully, or stopped to consider how if might make other people on the spectrum feel. It is also possible that many of these folks have never spent much time with people who are on other places on the spectrum. That’s a shame, because they might find they have more in common than they imagine. My son takes mainstream academics at high school but has a riot when he is hanging out with friends who tend to be labeled moderate to severely autistic. They just click. Basically, I think what comes off as mean spirited on the part of these few individuals in the AS crowd might just be an education/exposure issue.
NightStorm
February 15th, 2010
18:27:06

I’m planning to rant about the self-dx’d elitist pricks who are bawwwing over the new changes. I for one as an asperger’s autist welcome being just labled “autistic” because I am autistic.

The people who are bitching need to grow up and get off the spectrum if they are being butthurt over this.

Fuck you guys I am autistic.
Clay
February 15th, 2010
18:32:10

@ VAB - If the problem is simply ignorance, then what’s AANE’s excuse?
http://aane.org/as_dsmv.html
MJ
February 15th, 2010
18:35:33

I honestly don’t know why you are surprised by this development. These are the people make up a large part of the movement that you helped start and is the natural result of your philosophies that romanticize what is, at heart, a developmental disorder.

You reap what you sow.
daedalus2u
February 15th, 2010
18:40:57

The only reason that some people with Asperger’s are angry with the definition of autism being changed is because they feel that being attached with the label “autism” does bring stigma. This is unfortunate. The purpose of a differential diagnosis is differential medical treatment. If there is no difference in treatment, there is no need or utility for a differential diagnosis.

What I find especially ironic is that the tendency to attach stigma to those who are “different” is usually a trait usually more associated with those with neurotypical development. It is a part of “human nature” to form a social hierarchy and put “the other” at the bottom. All social animals have a pecking order. Humans are no exception. Humans who are trying to be accepting of neurodiversity are trying to be different.

I have Asperger’s. I am not “proud” of my Asperger’s. I did nothing to acquire Asperger’s, I did nothing to change the course of my Asperger’s. I reserve my “pride” for things that I have done, not for things that are completely beyond my control.

I am not “proud” that I have ten fingers, two arms, two legs and ten toes. Why should I be? Why should I attach stigma to someone who has a different number of fingers, arms, legs or toes? I am proud of things that I have built with my hands, but that is something that I have done. A person with nine fingers has every right to be proud of what he/she has accomplished with those nine fingers too. My accomplishments with ten fingers do not detract from someone else’s accomplishments with ten or nine, eleven, or even with no fingers.

A change in the label that others attach to me does not change who I am in the slightest bit. It has not the slightest reflection on me, who I am, what I have done, or what I might do. It is very unfortunate that there is so much “othering” of people with labels and stigma. Stigmatizing other people is easy, that is the normal human default condition. Rising above that and not stigmatizing other people simply because they are different is difficult. It is something worth trying to do; and something worth being proud of when you are successful.
Clay
February 15th, 2010
18:51:24

Yay, Daedalus! Well said.
Clay
February 15th, 2010
19:07:32

@ MJ - Butt out, Jabberwocky. We know there are some who feel differently, and we’ll try to educate them, maybe shame them for their bigotry. We don’t need the likes of you and Mitchell jeering from the sidelines.
Kev
February 15th, 2010
19:09:12

MJ - you and fw2 are doing exactly the same as Carely. Its just as false and discriminatory. Read and try and understand what Daedalus just posted.
MJ
February 15th, 2010
19:35:14

@Clay – when we are talking about a condition that my children suffer from I will not “butt out”. I am not “jeering” from the sidelines but pointing out the rotten core of what you call ND.

@Kev – “discriminatory”? Really? Can’t you think of a better response that name calling?

The funny thing is that there is no real change happening. Aspergers is already considered part of the “autism spectrum” and the only change really is merging the 4 remaining PDD labels (aka autism spectrum) under one label.

But apparently some people with Aspergers feel threatened by being labeled with autism and yet they feel more than comfortable speaking for everyone with autism and denouncing both treatments and possible cures. I think there is a word for that.

So here is your chance to redeem your movement. Prove to the world that you represent the best interested of ALL people with autism and you will gain some legitimacy. Fail to control your rebellious members and the true nature of your movement becomes obvious.

Good luck, you are going to need it.
VAB
February 15th, 2010
19:57:08

Clay,

With regard to AANE, as Upton Sinclair said, “It is difficult to get a man to understand something when his job depends on not understanding it.”
Clay
February 15th, 2010
20:19:22

@ VAB - I think you, (and Upton) hit the nail right on the head!
autismnostrum
February 15th, 2010
20:23:28

Daedalus, that was just awesomely well said.
Laurentius Rex
February 15th, 2010
20:25:35

Very Droll VAB,

Some of the reactions are predictable given the vested interest.

Lianne Willey for instance, whether or not her comment was just foot in the mouth syndrome as she claims or not.

I am prepared as I implied in my long post to cut some of the “aspie” camp some slack for want of understanding, but it is harder to forgive those who one knows to be sophisticated commentators, and Phil Schwarz does come into that camp, as does MJ Carley.

It is interesting that the only person who I have seen so far who opposes the changes from what I would consider honest motives is my long time opponent Michelle Dawson, because she does so out of genuine belief that there is a difference which has nothing to do with the respective worth or funtioning ability of either category.

I also wish people would understand that when I use the term difference I mean it in techical and neutral sense in that impairment is difference, a difference is always measured from something else and therefore is entirely subjective because of perspective. Disability is in part the nuance that is given to difference, they are not the same thing, one can be different and disabled, one can be different and be impaired, one can also be impaired and not disabled, because of the way I am using the words.

A lot of people don’t understand that and say that the social model of disability denies impairment, it never has done any such a thing, it’s semantics and granted complex semantics, it is not surprising if people who have cognitive impairments in terms of parsing semantics do find the explanations of the social model hard to follow, given that there is no automatic correspondence in colloguial and everyday language. Not everyone spectrum or not, will make the investment to understand it, any more than they will to understand quadratic equations. It is a form of technical language but a necessary and useful form when one sees what it can and has achieved in the advancement and consideration of “impaired” people.

Oh bugger it, sometimes I think I am just talking to myself, it’s that philosophical voice again :(
chaoticidealism
February 15th, 2010
20:28:22

I’ve been blogging about this too (see my web site for the full rant). I don’t think I blame them as much as most people, because it is so very easy to fall into that sort of trap. People raised in an environment where disability is stereotyped have a very hard time applying the concept of disability to themselves. Those who managed to accept the reality of Asperger’s while denying the reality of disability are also the ones who tend to be the angriest about being grouped with the “low-functioning autism” stereotype. It probably threatens their sense of self-worth, because if you have been justifying your existence (you have to do this if you still believe that being disabled means being not as good as other people) by saying that Asperger’s makes you better than those other autistics, then removing the distinction between AS and other kinds of autism means you have to face that stereotype head-on; and that’s very difficult to do. I think it’s more fear we’re seeing here than anger.
abfh
February 15th, 2010
20:28:35

Thanks Kev. I’ve posted some more links here:

http://autisticbfh.blogspot.co.....tions.html
Joseph
February 15th, 2010
20:47:41

They want to be called Aspie and known as being “autistic” but they don’t want those like my youngest to be part of their world.

@FMW2: You didn’t get it at all. They do not want to be called “autistic.” The people with an Asperger diagnosis who prefer to call themselves autistic have absolutely no problem with being associated with those like your youngest child, or my own son. That should be self-evident.
Dedj
February 15th, 2010
20:54:25

If anything, the anti-ND movement has been the most forthright and passionate about creating a strong delineation between ‘aspie’ autistics and ‘lower functioning’ autistics.

When you have even award winning ‘autism advocates’ who are openly anti-ND going around stating the belief that Aspies or HF autistics are ‘nothing like my child’, pinning the blame on the ND movement is a weak arguement.

Besides, this hierachy of impairments mentioned by LRex above exists outside of the autism spectrum, and even spreads to hierachy of aetiologies in the case of conditions like diabeties (‘real’ verses ‘fat’ diabetics), liver and pancreatic disorders (‘alcholic’ versus ‘ageing), and even traumatic versus acquired illness (‘accident’ versus ‘lifestyle’).

Blaming the ND movement for something that both pre-exists it and exists in unrelated conditional identity politics is rather sketchy to say the least.
Ali
February 15th, 2010
22:45:58

I blogged on this, too, just now (see the link in my name thingie).
Savannah Nicole Logsdon-Breakstone
February 15th, 2010
23:07:41

Have been commenting around blogs on the topic, and have been trying to arrange my mind from comment-writing to blog writing for the past several days. A little harder than usual, not because of the subject matter but because of family issues (My Spectrumy Grandother almost died last week, and had some “confusion” that scared me more than the almost dying did.)

In the meantime, here;s the comment I posted over at brightmindlabs.com’s post on the topic:

“I am an adult who would currently have an Aspergers Dx. I am VERY happy that the ASD dx is Subsuming the Aspergers Dx. There is no reason that people wouldn’t keep calling “ASD, Mild in severity” “Asperger’s” outside the medical community after this- this is just the Diagnostic Manual, it is not what uniformly defines the way that our culture as a whole addresses a particular disability. For example, many people still use the term “Manic Depressive” for those with Bipolar Disorder, even though that is not the Valid diagnostic language set down by the DSM IV.

“As for me, when I introduce myself to people who will need to know my disability such as the owner of the store I use regularly, my neighbors who check in on me, and those who I volunteer with, I say “I am Mildly Autistic. . .” followed by what that will mean in that circumstance. For example, the lady at the store knows that if I take a long time wandering around the store without picking anything up, I might be having an overwhelming day and might need my focus brought back to the purpose of my visit, or even help figuring out what to get.

“I do not use the term Aspergers, in part because I feel like it is un-necessarily divisionary, potentially bigoted, and quite frankly I find it demeaning of the personhood of my friends who are less likely to “pass” as NT, as well as of myself on the days when I CANNOT pass. Also, because the PR work some “aspies” have done means that people assume that I will exhibit the same way as the famous ones do.

“When I did use Aspergers, People assumed I was good at math or science- But I have Dyscalclia! I even got the “computer Programmer” thing tossed at me, and while I admire the programming of others, my own issues make it exceedingly difficult to generate original code. It does not occur to them that I could have a special interest in something like Anthropology, or in the histories of Oppressed people, or that just as there are certain skill sets learned by those with other special interests like math and science, I have learned skill sets relevant to my own special interests.

“They expect to see social Awkwardness, and maybe hyper focus and clumsiness. They do not seem to expect Melt downs, or abnormal structure of sentences on my bad days, or that I might say something that sounds poetic to the NT ear but is actually a rather literal description of what I see in my head.

“To me, the PR done in the name of Aspergers has separated us out from what the reality is for most of us, and from who we are on our bad days, and even subliminating our actual NEEDS to the point where in places like CA, USA, whole swathes of the population cannot get NEEDED services because they have an Aspergers Dx.

“Right now, The backlash seems to come from two places- fear that it’s an elimination rather than subsumption of Aspergers, or plain old Pride. The first makes sense- the language is vague enough that unless you read the notes/official commentary, you might be scared that it is stricter than the old criteria, and that you might loose the services you were lucky enough to get. not technically accurate, but could in practice happen, even though those with Aspergers and PDD-NOS are, in the literature and commentary, by default a part of the new ASD criteria.

“The second- Pride- is shameful, and the rhetoric from these proponents smack of ableism.”
Springingtiger
February 16th, 2010
00:06:06

I have a diagnosis of Aspergers. I am not sure why so many parents of autistic children seem to resent us or why there seems to be such a “my kid’s more autistic than you mentality” in the Autism Community. Autism Community? What a joke! What community? Everyone is at everyone else’s throat.

As long as Aspergers is a separate diagnosis autism is obviously a disability. Including Aspergers in a general diagnosis muddies the water. I don’t need any assistance I hope that does not adversely affect those who do.
Amanda
February 16th, 2010
00:20:01

http://ballastexistenz.autistics.org/?p=601

That’s the one I wrote.
Amanda
February 16th, 2010
00:51:54

Also, reading comments here, wow. Like Larry I have background in the disability rights movement and use the term difference how he does. Have never denied impairment but of course don’t see it the same as those who view disability as a medicalized and entirely negative thing.

Also those who say this is out of nowhere, where have you been? Lots of autistic people, me included, have been writing about elitism and hierarchies of this kind for years. This was entirely predictable although I would have expected Phil to know what Kanner really means (not what most people think it means) by now.

None of these people are unfamiliar with autistic people who have the very impairments they want to distance themselves from. Carley in fact has used much of my writing both with and without my permission and is entirely familiar with my impairments, which is why it’s doubly insulting to hear it from someone who thinks I am good enough to use my writing but not good enough to share a label with.

The ranting about self-diagnosed people is just a different form of snobbery and elitism and solves nothing. Not everyone grew up when autism was. Even in the DSM, and not everyone grew up in places where psychiatrists existed or were affordable, etc., so in addition to all the usual biases attached to people who rail against self-diagnosis, it’s both ageist and classist among many other things.
Heather E. Sedlock
February 16th, 2010
01:56:11

I love what daedalus2u had to say. claps

My father heard my radio interview on BlogTalkRadio from Autism Women’s Network and he had a few critiques. One he said: You came across as a know-it-all and you wouldn’t let them finish their questions before answering.

And then he started talking about my “diagnosis” versus how he raised me. He said “Your mother and I never knew what the reason was for why you did the things you did. We always said you marched to the beat of a different drummer. That’s my heatherbabes! and so on. We just knew you needed thirty minutes to walk to the bus stop and your brother need two. Having had a diagnosis now for 13 or so years, you have not changed. You still march to the beat of a different drummer and you’re stlll my heatherbabes. I don’t care what they call it in a book. You’re name is Heather not autism. Your two sons are named Brandon and Thomas… not autism. So let them label the kids any way they want if it gets the insurance company to pay for the services y’all need and just know that that is all there is to it. None of the labels really matter because it is NOT who you are. It may explain WHY you see things no one else around you did growing up (i.e. seeing 3D images on wallpaper, contrast/meshing of colors in leaves, tasting things when I see colors, etc.) but it does NOT define who you are as a person.”

I don’t know that I can say it any better than that.
Heather E. Sedlock
February 16th, 2010
03:42:51

Well, yeah I blogged about it too. Y’all can read it iff’n ya want to :) I’ll be reading some of these listed in the comments as well!

http://heatherbabes.autisable......ly-matter/
Donna
February 16th, 2010
03:54:54

Medical science used to have morons, idiots and imbeciles to describe people with defective brains, but those words became pejoratives, and mentally retarded was substituted. Then mentally retarded became a pejorative, and that got switched to developmentally disabled. Many parents with children born with defective brains glommed onto “autistic” because it had more cachét than retarded or fetal alcohol syndrome or brain damaged, perverting the word autistic and turning it into a new synonym for retarded.

So I don’t want to be called “autistic”. I prefer the distinction Asperger’s brings me; that I am endowed with a different brain, not suffering from a defective brain.

Read more: http://leftbrainrightbrain.co......z0ff7cxhl4

Where do you think all the parents have gone? You know the parents of kids who are not into biomed/chelation and also can’t be found on the side of Neurodiversity either? The chelation vaccines cause autism biomed camp is a small section of the autism community and is of equal number to the other camp that identifies itself as the neurodiversity community. These two camps have had a slug him out, no holds barred, pissing contest on the internet for too many years! So one has to ask themselves is where are all the other parents who used to be found on PDD forums? Forget the parents of small aged children, or parents new to the pdd dxes, consider the parents of PDD kids who are turning two digits and up and ask yourself where are they? Did they abandon the “stigma” of autism because of the volley back and forth fodder of the two camps I identified above?

Is it possible that they didn’t want to stigmatize their child by the two constantly warring camps? Did autism become such a negative entity that people abandoned it?

Who wants their child’s identity to be confused with elitist? What about all the issues that are kept hidden—like the violence that comes for many with an autism or aspergers dxes, because that doesn’t make for good press or show autism as a positive, so lets just keep it hidden, so those who need help get NADA. There are so many issues that would help, but the autism community two warring camps has to keep quiet about and focus on Jenny McCarty vaccines cause autism vs Neurodiverstiy all PSA’s must be a POSITIVE or we will destroy the PSA!

Now you guys are having a field day in complaining because some want their aspergers identity. But you missed the BIGGER picture. More people have left the autism community for the neverending infighting and the stigma that is the word autism!

Who wants to be indentified with a community that brought their woes on themselves????
Heather E. Sedlock
February 16th, 2010
04:04:47

raises hand for Donn Um, I’m right here!

I have a son who is 11, and a son who is 8… so, the older child thing going on here.

I do not self-identify with either ND or as a Curebie.

I’m just an autistic adult with autistic children doing the best I can as a mom. Yes, I miss a lot of the infighting done on blogs and such and try not to get bogged down on it.

It doesn’t help my sons any. I don’t think of myself as disabled although I am. I mean, I got someone coming into my house 5 days a week because I am unable to do things directly because of my autism. So, duh.. but I don’t think of myself that way.

I don’t care if others do. Whatever floats their boat.

I don’t care what the doctors want to call me either as long as my insurance company continues to help pay for these needed services. If they want to call me a duck, I’ll quack if it gets me the help I need The label itself DOES NOT matter in any other area other than to be able to provide services and treatments.
Amanda
February 16th, 2010
08:25:56

The term ND was created by ieople who hated anyone who dared to say there was anything positive about autism. It was not created by anybody who actually got lumped into that category and it is completely false to assume that those labelled “ND” and anti-vaccine people are even opposites, or that the whole of people who get lumped into either category are enemies of those in the other one and spend all their time warring.

Before these recent groupings there were other groupings, each of which had small factions within it that were constantly at each other’s throats, but most of whom were not into that particular conflict, or not into it to the degree that some people would represent it.

Life is more complex than “ooh those evil NDs can’t stand to hear anything negative about autism” or “ooh those evil anti-vax people can’t stand to hear anything positive about autism,” or even the idea that ND and anti-vax are all about fighting each other, and I really have to wonder about the motives of anyone who would simplify matters that much.

Personally I always get called an “ND” whether I chose that simplification or not, but I have openly criticized people who mostly concentrate on fighting a cartoon caricature of the other side, and have worked alongside and related just fine to people who take their kids to DAN doctors and can’t stand being autistic. I could name many other people who don’t fit the caricature of whatever “side” or “camp” they are generally lumped into by people who enjoy putting people’s beliefs into little boxes.

The way I prefer to do things is to work with nearly anyone who roughly shares my beliefs on whatever issue we are working on. If I’m not working on something that demands a no-cure mentality I couldn’t care less if someone wants a cure or not. The only people I flat-out won’t work with regardless of beliefs are people that are untrustworthy or dangerous, and even then if they are not too much danger I might work with them on something.

I have gone to my state house alongside people who want to cure their children in order to lobby for adult services. I have worked alongside people with nearly every belief out there as long as they wanted to work together to get communication technology to people who don’t have it. I have worked alongside people who don’t believe communication technology is necessary in order to get a more positive view of autism out there. I have worked alongside people who dont believe autistic people including me should have services, in order to get people out of institutions, and I have worked alongside people who trapped their loved ones in institutions in order to try to work for more services.

Which has put me in contact with people of just about every persuasion when it comes to views on autism. And I would do it all again.

But I forgot, apparently I am just one of those “NDs” who can’t see past the most caricatured version of the rivalries that exist. (Hint: Most “NDs” are at least somewhat like me in this regard. If anyone hasn’t got to know us yet, don’t believe every caricature you hear.)

As to what I would call myself, I could say I come from a disability rights perspective and apply that to autism. But more so I am a person who works from a few personal ethical principles that for the most part happen to align me with parts of the disability rights movement and parts of the autistic community. While everyone is affected by everyone else, I didn’t grab a set of beliefs wholesale, I came at them from the bottom up rather than imposing them from he top down.

My annoyance at being held to a rigid set of beliefs or to a group’s set of values caused me to leave the hub. It was a personal decision and I don’t want to imply that everyone with beliefs like mine would decide to leave. But it does say something about my attempt to avoid being seen as an “autism blogger”, “hub blogger”, “ND blogger”, or other things that get more likely the more groups you join.

And there are lots of others like me in these regards both in and out of the hub, in and out of “ND”, and in and out of the “autistic community”. These are not monolithic terms that can be thrown around to imply people think or behave in certain ways.
Kev
February 16th, 2010
09:21:40

@MJ – Its only name calling if I’m wrong. Your initial response response is characterised by the exact same discriminatroy tactics used by Carely. A one size fits all approach that states all aspies hate autistic people. Its just as discriminatory as stating all black people are great dancers or all British Asian men are doctors. I was quite clear in my post that not all aspies hate the redefinition proposed and surely if you had an ounce of observational skills you could see that for yourself from the comments left by the aspie people also on this thread.
Clay
February 16th, 2010
10:29:57

Author: MJ
Comment:
@Clay – when we are talking about a condition that my children suffer from I will not “butt out”. I am not “jeering” from the sidelines but pointing out the rotten core of what you call ND.

@ MJ - Where you’re wrong is that those Asperger’s people who don’t want to be associated with “autistics” are NOT the core, they are our radical fringe group. I know the kind of folks you’re talking about, like many of those on AFF, (which I have never belonged to), and I can say that if they’re not “with us”, then they have no concept of what Neurodiversity is really about. It’s about acceptance of the fact that we are all different, and we all should have the same basic human rights. That said, they have rights too, we can’t control them, we can only try to bring them to our point of view. That’s exactly what we’re trying to do here, and some of us have criticized a major organization that we believe is on the wrong side of the argument. You and fw2 just aren’t helping things with your misunderstandings about what our core is really about. It’s time to reconsider what you think you know.
Laurentius Rex
February 16th, 2010
10:30:54

Amanda, I did not just grab a set of Disability Rights principles and apply them to autism.

To start with when I first became involved the social model was relatively new and under debate in a pre internet world. It is through practice that it’s value became apparent, because it is a model intent on transforming societies prejudices against disabled people, and the propensities to disregard what are popularly called “special needs” as too exceptional, or costly, or just part of the natural order of society to be ignored.

Campaigning for disability rights means different things to different people, and it often meant negotiating compromises between the needs of one group for say physical access and another for a safe environment. It meant learning how to incorporate psychiatric survivors and people with intellectual disabilities, people with physical and people with sensory impairments in a common cause, why ought not autism to belong with such a movement?

Part of that struggle was against the prevailing attitudes of many charities that were parent led, against the co-opting of adult people with the impairment they were set up for into there governance, hence the phrase “nothing about us without us”

It was very much a campaign to put people with the actual impairments in control of the campaigning for and commisioning of services. It wasn’t a noisy blog world, it was more than ideas. It involved direct one to one advocacy, setting up advice services, demonstrations, negotiations, all leading up to and not content with the passing of rights legislation that did not exist until the 1990’s

It is only natural that I would take this attitude into what is still the rather backward world of autism advocacy (I use the term in it’s widest sense to include the ‘enemies’ of ND) where these principles have yet to make maximum impact

As for the word neurodiversity, it is a word that albeit may have first been used on an autism email list, came out of a postmodernist perspective on disability rights if one cares to study the rest of the articles in the book where it first appeared in print.

Corker, M & French, S (1999) Disability Discourse, Open University Press

“Drawing upon personal narratives, rhetoric, material discourse, discourse analysis, cultural representation, ethnography and contextual studies, Corker (deaf and disabilities studies, U. of Central Lancashire) and French (department of health studies, Brunel U.) present 20 contributions that emphasize the multidimensional and multifunctional nature of disability language. They analyze the role of language in struggle and transformation in power relations and in the engineering of social and cultural change. Distributed by Taylor and Francis. Annotation copyrighted by Book News, Inc., Portland, OR”

Notice the date on that, long before the autism hub, long before neurodiversity.com was registered as a domain.

For more about the Social model itself one could do worse than read Finkelstein, a guy who came out of the anti apartheid struggle. So much for the “unrealism” of the social model and it’s background.

http://www.leeds.ac.uk/disabil.....sessed.pdf
Sullivan
February 16th, 2010
22:16:28

“Where you’re wrong is that those Asperger’s people who don’t want to be associated with “autistics” are NOT the core, they are our radical fringe group.”

Clay, I would argue they aren’t even a fringe group. They are outside of neurodiversity altogether.
Clay
February 16th, 2010
22:39:11

Sullivan said:
“I would argue they aren’t even a fringe group. They are outside of neurodiversity altogether.”

I think you’re right. All those proud Aspies who would not agree with the principles espoused in the “One Community Pledge”, (which is linked to in its entirety in the comments section of my blog), I don’t even want to know ‘em. You can consider it a foundational statement of “neurodiversity”, though that term may not have existed at the time.
MJ
February 17th, 2010
00:20:19

@Kev – there you go again, distorting what I am saying into absolute terms and then pouncing on it. Either you really only understand black and white or the straw tastes good to you. Either way, you didn’t address a single thing I said, which kind of proves my point.

@Clay – sorry to say, in my opinion, you are quite mistaken and have no idea how your movement is perceived by outsiders nor do you apparently know who speaks for your group on the internet. Perhaps it is time for you to reconsider what you think you know.

@Sullivan – The rest of the members of your group are attempting to either shame your unruly members or throw them under the bus. You try to one up them by denying they exist at all. But like an embarrassing cousin, you can’t pretend that you aren’t related for long.
Mike Stanton
February 17th, 2010
00:52:49

Being autistic or aspergers or being the parent of someone who is autistic or aspergers is something that happens to you. You do not have a choice in the matter. But you can choose how you respond to this. Some go all out for a cure. Others claim that this is the next stage in human evolution. Most of us settle for the fact that Autism has its positives and its negatives. This is our life and we have to make the best of it.

Being tuppence ha’penny looking down on tuppence may make you feel better but it does not alter the fact that you are still only tuppence ha’penny. It is much better for all us pennies to unite and assert that together we are equal to any pound.
Sullivan
February 17th, 2010
01:15:42

MJ,

you don’t get it. From my perspective, You are one of the “embarrassing cousins” of the greater autism community, as much as the Carley’s of the world. I acknowledge both as being in the greater community, while I disagree with your positions.

The fact of the matter is, you don’t understand what neurodiversity is all about. Your statements make it very clear. In the game you want to play, you have found a pawn. Have fun with it. Just don’t expect anyone who actually understands neurodiversity (in any of its flavors) to agree with you. There are many places on the web where you can find people who play the same games as you. Feel free to take your discussion there. Here you just exhibit ignorance.
Joseph
February 17th, 2010
01:27:41

@Clay – sorry to say, in my opinion, you are quite mistaken and have no idea how your movement is perceived by outsiders nor do you apparently know who speaks for your group on the internet. Perhaps it is time for you to reconsider what you think you know.

@MJ: Name names. Surely, if you’re correct, you should be able to identify well known persons who both speak on a regular basis about the ideals of Neurodiversity and who also do not want to be associated with autism.

And no, I don’t think you’ll find Michael John Carley is an example. In fact, ABFH and hub bloggers were unhappy with Carley as early as 2006.
MJ
February 17th, 2010
02:20:09

Sullivan,

As you always do, you seek to attack the person rather than refute the idea. The “facts of the matter” are that I understand quite well what the ideas about neurodiversity are. I even agree with some of them.

But, along the path to helping people who suffer from autism you lot took a nasty turn down the anti-treatment, anti-cure path and wound up being a movement that denies the fundamental problems that autism can cause.

You talk about the “positive” side of the disorder which, frankly, do not exist. The “positives” that you go on and on about are the properties of the person – not the disorder.

A person is smart, intelligent, funny, focused, or whatever other traits you have decided should be associated with autism today. These traits can and do belong to any person – with or without autism. They are not a properties of autism.

Autism is a disorder but instead you have elevated it to being a person’s identity. You teach people with autism that to be worth something they have to believe that autism is who they are.

You should be spending your time teaching people that THEY have worth for who and what they are and that they are limited to being a disability. You should be teaching them that they can do anything they put their minds to and that no one can tell them they can’t do something.

Let me say that again since you clearly don’t get it.

Every person has worth regardless of who they are or what they struggle with. Every single person.

A person is a person – a person is not a disorder.

You limit people with autism with your anti-cure, anti-treatment rhetoric by making them feel ashamed if they try to cure the most disabling aspects of their conditions. You relabel some of the most horrifying aspects of autism as “co-morbid conditions” and dismiss the idea that autism is anyway related to them.

A child hits themselves to the point of causing permanent damage – that isn’t autism, that is co-morbid.

A child has intense GI issues – that isn’t related to autism, that’s co-morbid.

An adult with autism has a violent episode and unintentionally kills a family member – that isn’t autism, that was something else. Must be co-morbid.

The members of your group roam the internet attacking everyone who dares disagree with them.

Take for instance Clay, who commented above. He left a comment on my blog to Jonathan saying –
“You get things so mixed up! We have no doubt that you are autistic, and that it caused your impairments, but your worst impairment is your whiny self-hating attitude, which was caused by your horrible domineering mother. Get it straight, dude! ”

I deleted the comment because it was a personal attack.

So Clay, here is your bit of shame.

How do you justify personally attacking a person with autism and insulting their parents? Is this what you stand for? Is that what sort of person you are?

Is this what your movement stands for?

You teach people with autism that to be accepted and have worth they have to embrace autism as their identity. You hold it up as some desirable condition to have. Diagnose yourself with autism and you too could be the next Einstein.

Then you act surprised when the people that you inspired, the ones that followed what you were saying, take your beliefs to the logical conclusion and deny that those other people with autism are anything like them. After all, they don’t have a disability like “those” other people, they are special – after all, “those” other people have to wear diapers and they are nothing like “them”.

So no, Sullivan, this is not a “game” I want to play. You simply do not understand what the movement you are part of does.

The question then becomes, what are you going to do about it. So far the reaction has been to deny that “those” people are in any way shape or form related to you. You tell them to go away.

That simply doesn’t cut it.

The way these people feel is a direct result of what you stand for and what you teach.

So, what are you going to do about it? Continue denying that you have a problem or own up to it and try and make it right?

That is the question.

I fully expect you to censor this comment, but I really don’t care. I fully expect you to continue with the group think and deny that there is a problem.

But go ahead, prove me wrong, I dare you.
Dedj
February 17th, 2010
03:28:27

MJ really, really does not understand some very basic things:

A movement is not a social club. Members have no power to ban other members.
There is no entry criteria. Members cannot stop people becoming members. People who do not hold to the consensus of the movement can freely declare themselves members.
The initial members hold no control over the beliefs of subsequent members.
Members may speak about the movement, but they do not speak ‘for’ the movement. Personal statements made by members may not be representative of the movement nor originate from their membership.
Members may hold membership of other (even seemingly contradictory) movements. Members are free to hold opinions that contradict their membership.
How a movement is viewed from the outside (especially by people who make broad sweeping statements and then deny responsibility when correctly called out on it, even less when said people have a history of misinterpreting statements both grammatically and logically and then defending their interpretation – even when corrected directly and expressly by the initial authour) is not always an accurate depiction, not is it always the fault of the movement.

Besides, as has been pointed out, the hierachy of impairments pre-exists whatever may be called the ND movement and the concept that ‘aspie’s’ are functionally seperate to ‘autistics’ is by no means exclusive to nor dependant on holding ‘ND’ beliefs.

If MJ fails to supply a direct reference AND a rationale behind his interpretation (both extremely unlikely) I would suggest that MJ gets banned. He has shown his hatred and irrationality often enough and has been cut significant slack here and elsewhere. It’s time people got rid.
Sullivan
February 17th, 2010
05:03:53

MJ,

Lacking in facts, you rely on the old saw:

But, along the path to helping people who suffer from autism you lot took a nasty turn down the anti-treatment, anti-cure path and wound up being a movement that denies the fundamental problems that autism can cause.

Here’s a hint: I don’t like it when people experiment on other people irresponsibly. That includes applying risky, unproven treatments to disabled children. I have and will speak out on this issue. I find it amazing that you don’t. If you want to cloak “uncontrolled experiments” with the mislabel “treatments” go ahead. Just don’t expect me, or the rational thinking people of the world for that matter, to agree with you.

This is a complete parallel to your misunderstanding of Neurodiversity. You chose your own warped definition, and then accuse me and others of adhering to it, then you berate us for it.

I am well aware of the difficulties a severely challenged autistic can face. My kid understands that even more.

You clearly do not understand the term “co-morbid”. Clearly. I won’t ask you to stop using it, because you continue to use a lot of terms and ideas that you don’t understand.

You limit people with autism with your anti-cure, anti-treatment rhetoric by making them feel ashamed if they try to cure the most disabling aspects of their conditions.

Give one concrete example of that. One.

If you actually read and understood what I have written, you would realize that my main complaint with the cure debate is that it makes no sense right now. There is no cure. There isn’t even one in the works.

Guess what. Chelation is not treating anything to do with autism. Lupron is not treating anything to do with autism. As to actual treatments, you are so far from the mark as to be laughable. However, I do not believe that any parent should be talked into a “treatment” where the safety and efficacy have not been proven.

I don’t think that doctors should be allowed to perform painful, invasive tests on disabled children when those tests are (a) no clinically indicated and (b) not approved by an independent ethics board. You defend those doctors. There is a divide between us that is as telling as any. You lay claim to the idea that people have worth, no matter who they are. I find that subjecting disabled children to painful procedures without benefit to them discounts their worth.

You have spent so much time writing comments here, yet you have spent no time understanding what is written by others. That is truly a sad thing.
Sullivan
February 17th, 2010
05:46:23

MJ really, really does not understand some very basic things:

One more basic thing he doesn’t understand: I know what I think better than he does. Somehow he thinks his prejudices are more valid than my own thoughts. He is so convinced that his prejudices are correct that he won’t listen to correction.

Odd. Here we have a post by Kev taking issue with an autistic adult. But that autistic adult’s views fit MJ’s incorrect view of “neurodiversity”.

Even though Kev is arguing against it. Even though what Mr. Carley says is so fundamentally against what any diversity movement would be about.

Amazing.
MJ
February 17th, 2010
05:49:40

@Sullivan – you again change the subject and do not address what I am saying. But fine, point out one time where I advocate for trying “dangerous” or “unsafe” treatments. Click on the link on my name and go review what I have written on my site about autism. Find one example where I suggest that chelation or lupron or other “uncontrolled experiments” are a good idea.

You have 155 posts to choose from – find one.

I bet you can’t and that is because I am not saying what you claim I am. Rather than actually addressing the substance, you would rather tilt at your imaginary windmills.

PS - here http://tinyurl.com/ycmhdnd is your one example of the ND movement discouraging treatment – in this case someone convincing the mother of a soon to be diagnosed child that is is wrong to use ABA with her child.

@Dedi – you speak in contradictions. If a movement is not made up of its members then what precisely is it made of up? And if the members do not speech for the movement, then who does?

The contradictions of your statements seems to know no bounds. You first say –
“Members have no power to ban other members.”

and then you call for me to be banned –
“I would suggest that MJ gets banned”

I am clearly not a “member” of ND but the irony is almost off the charts.

As for me being “banned” – say the word, Kev, and I will stop commenting here instantly and forever.

As for “direct reference” and a “rationale behind [my] interpretation”, perhaps you could explain what a “direct reference” for my “interpretation” would be? An interpretation is, by its very nature, based on opinion – so should I provide a direct reference to my opinion?

If you want that, click on the link on my name and there you go – a direct reference to what my opinions are.

As for “hatred”, well, I don’t know what to tell you. If you feel the need to engage in name calling and making accusations, more power to you.

Although, and this is just a thought, maybe you could provide a direct reference and rationale behind this statement that I show hatred, presumably to people with autism – which would include my children. If you are unable to do so, then perhaps you should, by your own logic, call for your own banning as well? Just a thought.
Clay
February 17th, 2010
06:25:49

@MJ, who said:
“Take for instance Clay, who commented above. He left a comment on my blog to Jonathan saying –
“You get things so mixed up! We have no doubt that you are autistic, and that it caused your impairments, but your worst impairment is your whiny self-hating attitude, which was caused by your horrible domineering mother. Get it straight, dude! ”

I deleted the comment because it was a personal attack.

So Clay, here is your bit of shame.

How do you justify personally attacking a person with autism and insulting their parents? Is this what you stand for? Is that what sort of person you are?

I don’t feel any need for shame in that. Mitchell had incorrectly claimed that I was “bringing back Bettelheim”, by saying that his mother had caused his autism by being cold, manipulative, etc. I’ve never said that, but that because she didn’t accept him as he was, and teach him to be accepting of himself, he learned to see himself as defective, useless, cursed by autism. It had cost him his mother’s unconditional love! To him, it’s all the fault of autism that he can’t be employed, get married, etc. I say that he could have done all those things, if he hadn’t been told that he never could. He has a self-fulfilling, self-defeating philosophy.

How do I justify personally attacking him? He has been personally attacking many others, singling them out by name, and heaping abuse on them. Although he doesn’t really believe in the thimerosal theory, he has become best buds with rabid John Best, whose whole raison d’etre is the mercury causes autism nonsense, which has been thoroughly debunked, to any reasonable person. When he stops attacking those who are actually doing some good for the autistic community, I’ll lay off of him.
Sullivan
February 17th, 2010
08:51:44

MJ,

let me get this straight. When asked to provide evidence that I am anti treatment, you point me to a blog post of yours that isn’t even about me? It is, in fact, about someone whom I respect, but with whom I have disagreed with on this very blog.

But fine, point out one time where I advocate for trying “dangerous” or “unsafe” treatments.

When you put something in quotes like that, it implies that you are quoting me. I didn’t say “dangerous”....but I should have. Lupron is dangerous. It was especially dangerous when they were giving full doses without testing for an adverse reaction first. The reactions are very nasty.

But, here is what you do. You support Andrew Wakefield. Your support is rather weak, but it’s there when you downplay the ethical lapses found proven by the GMC. Those lapses include the use of an experimental drug on disabled children. A drug without any safety or efficacy record. Those lapses include invasive and painful procedures applied to disabled children, which were not called for according to their symptoms and which were not approved by an ethics board. These aren’t small lapses the GMC had “to pin on him”. They were real ethical lapses.

As far as I know, you don’t discuss chelation or lupron. Which begs the question—why not? The science behind both is clearly wrong. Enjoy sitting on the fence.

Your incredible stretch with Dedj’s statements is something I’ll leave to Dedj to respond to…or ignore.
Kev
February 17th, 2010
09:07:27

Nice couple of rants there MJ. Sadly, as per usual, they fail to address any points. The only person whos making absolute statements about whole groups of people in this thread is you. Again, as usual. But you enjoy your continuing swim in that Egyptian river ;)
Phil Schwarz
February 17th, 2010
10:08:32

I’ve been very busy with work and family matters in the past few weeks, so I haven’t had the time I need to catch up with all that has been said in the autistic community about the draft DSM-V autism language.

I think a whole bunch of things have gotten conflated on the one hand, or dichotomized on the other, in really unfortunate ways.

Bev’s post was one of the first things I did read, and I agree with her completely.

I honestly don’t know, though, how many “Aspies” there really are out there that are really “angry”, or even as uncomfortable as Michael John Carley seems to be, about being recategorized within the rest of the autism spectrum. I think Carley became the unwitting poster-child for a mainstream media run with such a story, and that story only reinforces the lies that those who fear and/or seek to undermine autistic self-advocacy repeat endlessly—that autistic self-advocates are all “high functioning Aspies” unconcerned with issues facing autistic people more disabled than they are, etc. etc.

The reaction—from many others in addition to Bev—has been swift and forceful, and well it should be.

But what’s gotten trampled in the process is that Carley’s ugly discomfort is not the only reason one might question the wisdom of completely eliminating the term “Asperger” from the DSM autism language.

I happen to think that there is utility in retaining the term within the unified ASD diagnosis—which I think is a good thing and a long time in coming. I think that for now, it should be used as a shorthand for the region of the unified ASD diagnosis’s domains which most closely matches the DSM-IV AS diagnosis. This will ease transition into the new diagnostic rubric—not for “angry Aspies”, but for clinicians, insurers, educators, employers, and so on—the many user constituencies of the DSM other than researchers and individuals carrying the diagnoses it defines.

Whether there is need for such a transition is a matter for open and reasoned debate. The media circus unleashed by the “angry Aspies” story has polarized discourse and made such reasoned debate difficult, if not impossible.

As research into cognitive profiles of the autism spectrum population advances, the definition of such shorthands for specific regions of the unified ASD diagnostic category may change; more shorthands may be added; some may be merged. This will need to be done so as to serve the needs of the various user constituencies of the DSM —researchers and individuals carrying the ASD diagnosis as well as the other constituencies I mentioned above.

But I think all of this should take place within the unified ASD diagnostic category, which I think is a good thing.

I am speaking here for myself, and not for AANE. I serve as vice-chair of AANE’s board of directors, and as such I am one voice among many—executive staff, officers, and board members, most of whom are not regular readers of the autistic blogosphere. My opinions don’t always prevail. Perhaps with time, they will, on this issue; I try to educate as best I can. I think that some of the language in AANE’s open letter to the DSM-V committee has contributed to the misbegotten “angry Aspies” story.

The truth of the matter is that the flap over the Asperger label is far from the most concerning of issues with the proposed diagnostic language. The reduction to two domains, the choice of what to measure as domains, the omission of sensorimotor input and processing atypicalities as a fundamental domain, the ambiguity in meaning of the term “severity”, and the fact that the severity criteria are still yet-to-be published, are all greater concerns than the disposition of the Asperger label.

So here are my full thoughts—so far—on the proposed DSM-V autism language:

1. Integration of AS into the new 299.00 ASD is on balance a good thing.

a. It fixes the primary problem with the DSM-IV categories that has hindered researchers, which is that similar individuals were being fairly arbitrarily classified into separate buckets (AS, PDD-NOS, autistic disorder).

b. Integration of the entire spectrum population into the new ASD category will help eradicate the stigma and persisting misconceptions about autism in the mind of the public. Richard Grinker stated this eloquently in his op-ed column in the NY Times.

c. In states where benefits accrue only to people diagnosed with autism, this should help extend eligibility. But see #3 below; what this giveth, that could take away.

2. I am concerned about the reduction to 2 characteristic domains.

a. The domains chosen are in general sequelae of other, more
fundamental characteristics, principal among them sensory input and sensory processing differences. Sensory issues are given only a token presence, as the cause of a(n optional) category of “repetitive and restricted behaviors” (domain 2). I firmly believe that research will find, over time, that atypical sensory input, sensorimotor response, and/or processing is present in every legitimately diagnosed autistic person to some extent and in some form, and that those atypicalities inform, shape, and contribute to causation of the observable traits in the two existing domains in this new 299.00 ASD definition (domain 1 being social/communication issues, domain 2 being repetitive or restricted behaviors). So these domains do not get us any closer to understanding the root essence of autism.

b. The domains chosen just happen to be the domains measured by the ADOS, the diagnostic instrument designed and promoted by the chair of the committee that wrote the new 299.00 ASD definition. This seems tautological to me; it smacks of the joke about the drunk who loses his keys in an alley but is searching for them out on the main street because the street lamp there makes it better lit :-).

c. The whole question of “severity”—what it means and how it is measured—in the new 299.00 ASD definition is problematic. Do they mean “impairment of function”? Do they mean “intensity of observed trait(s)”? In each case, what is the proposed mechanism for measurement? Even ADOS is notoriously subjective in its application. It speaks volumes that they have put the new definition up on http://www.dsm5.org with the “Severity” tab empty of content. (They say it will be posted later and to check back frequently.) I think this is indicative that the bulk of the original problem with the DSM-IV categories facing researchers remains unsolved, in DSM-V: subjectivity of classification leading to false identification of probands as “apples and oranges” rather than “apples and apples”. What DSM-IV mistakenly put into separate buckets, DSM-V will mistakenly assign severity measures that differ due to subjectivity of the observer. Big error bars on a single bucket may be better than classification into multiple disjoint buckets, but I suspect by a lot less than the authors hope for.

3. I am concerned that the language in both the domain definitions—in particular, what is considered mandatory for a diagnosis vs. what is considered optional—and in the “severity” dimensions (a huge shoe still yet to be dropped!) will “undiagnose” people who very definitely need support, services, and accommodation.

I am concerned that the less “severe” ends of the dimensions will be characterized as “mild”, resulting in ill-advised decisions by insurers, educators, employers, and others with power to grant or deny benefits that that “mildness” warrants less support, services, and accommodation. There is nothing categorically “mild” about the existing DSM-IV AS or PDD-NOS, and I am concerned that the reclassification of people with those diagnoses into less “severe” dimensional regions of the new 299.00 ASD diagnosis will lead to the denial of support, services, and accommodations, even if not to outright “undiagnosing”.

4. I am concerned about the value-judgement biases that remain in the language of the definition. I expect to see more such value-judgement bias in the language defining the “severity” dimensions when that is finally settled upon and posted. Michelle Dawson writes eloquently about this, in the course of assessing the problematic nature of the proposed “severity” dimensions:
http://autismcrisis.blogspot.c.....dsm-v.html

5. I think that the term “Asperger” should be retained, specifically as shorthand for a specific cluster of traits in the measured domains. In fact, I am in favor of adopting additional shorthand for other yet-unnamed clusters as doing so becomes beneficial to any of the user constituencies of the DSM.

The proposed changes benefit only one of the several user constituencies of the DSM, namely researchers—by reducing the “apples and oranges” effect arising from DSM-IV’s disjoint categories. But there are other constituencies as well: clinicians, insurers, educators, employers, diagnosed individuals themselves, their families, and supporters and caregivers. The shorthand designations (and I think “Asperger” should not be the only such one, over time) help people dealing with the same needs to more easily and efficiently find appropriate resources and fellow travelers. This has certainly been true for AS individuals and their families and supporters over the course of time DSM-IV has been in publication. Having the term available as shorthand—but not to the exclusion or even pre-emption of the unified dimensional ASD diagnosis—seems to me to be the best way of balancing the needs of the other user constituencies of the DSM besides researchers, with those of the researchers.
NightStorm
February 17th, 2010
15:57:37

so in addition to all the usual biases attached to people who rail against self-diagnosis, it’s both ageist and classist among many other things

Because only old poor people self-diagnosis? It’s not like some lonely teenager that is trying on labels and finding an identity isn’t gonna look up the DSM-IV or WebMD and decided that because he had one to many ‘swirlies’ that he is really asperger and uses it as an excuse for being superficial and a jerk.

Surely that never happens.

If my sarcasm isn’t enough, I see more young adults parading around with a self-diagnosis than older people. And most do with the kind of juvenile sort of immaturity, thinking that self-labeling is a replacement to a real diagnosis. And if you do question their dia-excuse me their identity. Everyone dog-piles on you about it until you bow out and hide some place else. Dear gods, if feel like I am back in the Otherkin community sometimes, just replace “Asperger’s” with “Elf”.

I have no problem with label wearing or trying on different ‘hats’ but I get irriated when these kids thunder around with their new shiny hat acting like they are the experts.

I haven’t met any older self-diagnosis except for my dear friend who moved, but I am sure the are not like the younger generations who are still quiet immature.

but I respectfully disagree with the assumption that it is agest to be against self-diagnosis.
Dedj
February 17th, 2010
17:13:14

MJ: first, Sullivan and others have addressed your concerns directly and appropriately you’re inability to address this is your problem not theirs.

As an example of just how difficult you are finding this rather simple issue, let’s look at your obtuse and error-stricken misunderstanding of my last response:

“@Dedi – you speak in contradictions. If a movement is not made up of its members then what precisely is it made of up? And if the members do not speak for the movement, then who does?”

I never said anything remotely like this. That misreading of what I said exists solely within your head. I do not appreciate your misreading and/or misrepresentation of my point.

You have utterly missed the point that members of a movement can hold opinions that are not derived from their membership of that movement, or that individual members opinions are not automatically defining opinions of the movement. There may be anti-autistic members of the ‘ND’ movement, however, as has been pointed out, people such as yourself with your exclusively negative talk of autism have definetly contributed to the stigma of autism, and the hierarchy of impairments both pre-exists and exist independantly of whatever may be called the ‘ND’ movement.

There are many ‘ND’ people that are pro-NLP, some to the point of becoming practioners. Others are furiously agianst it, literally and figuritively. By your arguement both would have to be ‘ND’ arguements at exactly the same time. Same as with the split in support/opposition to sectioning, MCA, DoL etc. Same as with the support/opposition to psychmeds and alternative diets.

“The contradictions of your statements seems to know no bounds. You first say –
“Members have no power to ban other members.”

and then you call for me to be banned –
“I would suggest that MJ gets banned”

I am clearly not a “member” of ND but the irony is almost off the charts.”

The stupidity is off the charts here. Members have no power to exclude over members from claiming membership of a movement. Your participation on a blog is not membership of a movement.

You have either falsely equated the two or you really do not understand the huge difference. Either way you have made yourself look both aggresive and idiotic.

As an example, I could get banned from every conference, blog or meeting, and yet my membership of the ‘ND’ movement cannot be revoked, even though I myself may be marginalised. There is no official register of membership, thus even people who hold entirely non-’ND’ views can (and, if you are correct – do) claim membership.

“As for “direct reference” and a “rationale behind [my] interpretation”, perhaps you could explain what a “direct reference” for my “interpretation” would be?”

Note how you suddenly change what I said halfway through your sentence. This is either a deliberate trick on your behalf, or you really have not been following the thread properly.

You were asked upthread for a example of a single well known pro-’ND’ person that holds the beliefs you attribute to the entire movement. That would be called a reference.

Explaining why you think their statements constitute what you say they do would be what is called a rationale.

“If you want that, click on the link on my name and there you go – a direct reference to what my opinions are.”

That wasn’t what was asked. You either know this and are simply lying, or you don’t and therefore haven’t been following the thread.

“Although, and this is just a thought, maybe you could provide a direct reference and rationale behind this statement that I show hatred, presumably to people with autism – which would include my children.”

Again, this is either a deliberate misrepresentation or you haven’t been following the thread. You have been making strong and false accusations against the ‘ND’ movement. In context the only correct interpretation would be hatred towards the ‘ND’ movement.

Please keep up.

“If you are unable to do so, then perhaps you should, by your own logic, call for your own banning as well? Just a thought.”

But I haven’t displayed the same posting history that you have – here and elsewhere. You have just shown that you read my post, yet it appears you understood very little of it.

No one else appears to have the same comprehension problems that you do. Perhaps you might like to consider that it might be you that is in error, assuming your ego will let you.

Notice that through none of this have you made a single accurate statement, nor have you provided a single example of the sort of person you alledge constitutes the ‘ND’ movement.

By the way, not only have I delivered treatment to people with autism and may do so in the future, I am far from the only person in the ‘ND’ movement that has or currently works in providing interventions to people with autism. Somehow, even though a few of the members that provide or advocate for services are rather well known (including participants on this thread), you ignore these and only concentrate on the people that fit your pre-conceptions.

That behaviour, Sir, is utterly unacceptable.

Your dishonesty and/or lack of coherency in this thread is shockingly poor compared to your apparent self-preception.

Please refrain from posting until such time as you are willing to make an effort.

Toodles.
Sullivan
February 18th, 2010
02:08:43

A simple way to summarize this is:

I have no idea why MJ comes here. By his definition I (and I believe Kev) are not Neurodiverse advocates.

He can make up whatever definition he wants. Just don’t expect anyone to agree with him.
MJ
February 18th, 2010
03:41:29

@Sullivan –
Ok, since you say that I like to play games, lets play a game of reading comprehension. Ready?

I ranted –
“You limit people with autism with your anti-cure, anti-treatment rhetoric by making them feel ashamed if they try to cure the most disabling aspects of their conditions”

Now, I would like you to note, that the word “You” in the sentence was meant in the plural as you (specifically, you) should have been able to tell when I used the phrase “you lot” in a preceding paragraph. But, I understand that this might be confusing, so lets continue on.

You replied –
“Give one concrete example of that. One.”

I responded (not ranting this time) –
“PS – here is your one example of the ND movement discouraging treatment”

Notice that I clarified the use of the “you” by substituting the more obvious “ND movement”?

To which you replied –
“let me get this straight. When asked to provide evidence that I am anti treatment, you point me to a blog post of yours that isn’t even about me?”

So, where exactly is the misunderstanding here? I realize I might have been ambiguous the first time but the second there really is no room for misunderstanding.

Lets try another one. You said –
“That includes applying risky, unproven treatments to disabled children”

and

“I do not believe that any parent should be talked into a “treatment” where the safety and efficacy have not been proven.”

to which I replied –
“But fine, point out one time where I advocate for trying “dangerous” or “unsafe” treatments”

Well, you might have me this time. You in fact said “risky” and “unproven” while I turned that into “dangerous” and while you said “safety and efficacy have not been proven” I said “unsafe”. You are clearly right and these are noth completely unrelated topics.

And how about one more, shall we?

You said –
“Guess what. Chelation is not treating anything to do with autism. Lupron is not treating anything to do with autism. As to actual treatments, you are so far from the mark as to be laughable.”

Notice you appear to be implying that I (unless you are using you to refer to multiple people here) support chelation or lupron.

I replied –
“Find one example where I suggest that chelation or lupron or other “uncontrolled experiments” are a good idea.”

to which you replied –
“But, here is what you do. You support Andrew Wakefield. Your support is rather weak, but it’s there when you downplay the ethical lapses found proven by the GMC. Those lapses include the use of an experimental drug on disabled children.”

And there we go, you put words in my mouth about chelation and lupron and when you realize you were wrong you switch to guilt by association. I wrote that I felt the outcome of the GMC was a forgone conclusion because of the politics surrounding the issue and you turn that into me agreeing with using experimental drugs on disabled children. I think you lose this one.

So let me do you one more favor and answer one of the questions you asked that actually matter. You asked why I don’t spend my time bashing treatments like chelation and lupron, and the answer is simple.

I prefer to focus on things that can actually help people with autism and don’t necessarily get covered other places. You may think it is of the utmost importance to bash a treatment while I think it is a much better use of my time to suggest to parents what might actually help their children.

For example, why don’t you cover that some children with autism might have problems with extremely low cholesterol? This one even has an easy fix – get your child’s cholesterol checked, and if it is too low change their diet to incorporate sources of good cholesterol (eggs for example). If your child is having nutritional issues it can cause systematic problems and addressing the imbalance can lead to a better quality of life and less issues.

Or are nutrional problems one of those things that parents have to “accept” about their child? Perhaps it is a “co-morbid” condition – oh wait, that’s right, I don’t understand that word.
Sullivan
February 18th, 2010
06:18:02

MJ,

You get the last word.
Laurentius Rex
February 18th, 2010
10:48:41

I actually night storms comments to be equally as offensive as the ‘aspie supremacists’ who wouldn’t be seen dead wearing diapers.

I would call night storms category ‘aspie exclusionists’

The equivalent of the ‘plymouth brethren’ who are the only ones going to heaven.

Nothing is new under the sun of course, as it reminds me of the rant Thomas McKean had some time ago when he appeared to resent that the Asperger’s category had opened the door to too many speakers on the conference circuit spoiling the exclusivity he must have felt when he was one of the ‘priveleged’ few. Of course even then there was this diagnostic snobbery, casting aspersians on other peoples ‘official’ dx’s even then. Donna Williams being a particular target as I recall.

The problem as I have always said lies in the medical categories and the medical model. There is always likely to be a problem with self dx to some extent, but I do think given the junk in DSM, who would want to identify with it if it did not fit to some extent, though maybe not to that ill defined and illusory concept of ‘clinical degree’

Those who think Asperger’s is cooler and more acceptable than Autism, well they are still labling themselves with a “disorder’

Yes some folks can get it wrong, but I don’t think they are likely to stick around. Some folks get it right but eventually do get that elususive medical ‘cachet’

The point about self diagnosis within an alternative social model of autism/aspergers is the notion of ‘peer validated’ diagnosis, in that the category does not and never did belong to Dr’s any more than Dyslexia does, the last thing it requires is a medical training to recognise, as it is a diagnosis of psychological observation.

The concept of peer validated diagnosis I owe to Martijn Dekker.

Martijn Dekker, I hear a few puzzled voices ask? (metaphorically that is, don’t want a dx of Sz do I?) Well I wonder where the ‘curebie’ anti vax crowd place him in the pantheon of ‘ND’, because you don’t see his name appearing in the blogosphere much, which just goes to demonstrate not all the action takes place in this rather artificial arena.
Dedj
February 18th, 2010
15:11:40

MJ seriously doesn’t get it.

‘Anti-treatment’ refers to a philosophy of opposing any form of treatment. Opposing a form of treatment does not make one ‘anti-treatment’, if it did, people who promote one school of treatment over another would , by this definition, be ‘anti-treatment’.

That is self-evidently and obviously and clearly a logically inconsistent and rather stupid arguement to make.

There’s no need to continue this discussion if MJ is just going to define terms how and when he pleases.

“For example, why don’t you cover that some children with autism might have problems with extremely low cholesterol?”

Why isn’t this obvious? Children with autism ‘might’ have problems with all sorts of things. Just like other children.

Unless you can show it is intrinsically linked to thier autism, there’s no reason why autism advocates ‘should’ focus on anything other than autism issues during their autism work.

That YOU think they should is no arguement.

“If your child is having nutritional issues it can cause systematic problems and addressing the imbalance can lead to a better quality of life and less issues.”

Well done! You’ve managed to work out something that has been known for years!

“Perhaps it is a “co-morbid” condition – oh wait, that’s right, I don’t understand that word.”

Correct on both counts.

Sullivan – I seriously don’t think MJ is playing. He clearly holds his beliefs rather sincerely. That he has failed at every oppourtunity, and failed miserably, and been incompetant in every attempt to validate his beliefs, and crassly contradicted himself at every turn, is not a sign that he is ‘playing’.

Just a sign that he’s an idiot.
Dedj
February 18th, 2010
15:26:41

“Martijn Dekker, I hear a few puzzled voices ask? (metaphorically that is, don’t want a dx of Sz do I?) Well I wonder where the ‘curebie’ anti vax crowd place him in the pantheon of ‘ND’, because you don’t see his name appearing in the blogosphere much, which just goes to demonstrate not all the action takes place in this rather artificial arena.”

Indeed, it’s amazing just how much members of the ‘anti-ND’ movement rely solely or exclusivly on what is written in the bloggo-sphere, sometimes not even bothering to do a quick google to see who the bloggers are and what they do in meatspace.

One quick example was when yourself and Dinah were accused of being ‘know nothing, do nothings’ by our award winning autism advocate friend, who mysteriously failed to reappear when Dinah indicated that she had a publication history that predates his involvement in autism adovacacy by as much as a clear decade.

The annonymity and relative safety of the bloggosphere allows people who are totally out of the network in meatspace to present, or being seen as, core members of any movement. It allows any person, no matter how rashly thought out thier blogs are, to have a voice.

It never occurs to the ‘anti-ND’ people that maybe, just maybe, the content of blogs and web posts written by random youths might, just might, be non-representative of what goes on in conferences, conventions, formal discussions and formal advocacy business.
MJ
February 19th, 2010
00:36:15

Dedj,

Like Sullivan, you really should not try to play word games. The phrase “anti-treatment” simply means against or opposed to treatment. It does not automatically imply that one is against every possible treatment that has ever or will ever exist. If a person promotes one form of treatment and actively discourages another, they are “anti-treatment” with respect to the later treatment.

Since I did not care to list out each individual treatment separately, I used a generic “anti-treatment” to represent the collective whole and to express the idea that the ND movement is opposed to the majority of the evidence based treatments for the core symptoms and problems of autism (such as ABA).

I tend to define my words the dictionary does and how they are used in common usage – how about you?

“Unless you can show it is intrinsically linked to thier autism, there’s no reason why autism advocates ‘should’ focus on anything other than autism issues during their autism work.”

You clearly missed the entire point of what I was saying. I am not saying this – researchers from the Kennedy Krieger Institute and John Hopkins have suggested that there is could be a specific problem with low cholesterol in children with autism.

Go look it up.

“Just a sign that he’s an idiot”

Thank you, coming from you that is a complement.

I seem to notice a pattern in your responses. You don’t actually reply to any idea but rather say thing things like “self-evidently and obviously and clearly a logically inconsistent and rather stupid argument” which is just an obnoxious way of saying that you disagree. The few ideas that you do respond to the substance (cholesterol), you clearly do not grasp the ideas being expressed.

If I were the sort to call people names, as you seen inclined to do, I think I would have to call you uneducated or possibly crass.

But seriously, point out what example of where I “failed at every opportunity” or “crassly contradicted [myself]” or was ” incompetant in every attempt to validate [my] beliefs” – just one will do. Just highlight my exact words that I said that you believe fit any of your criteria. If I am as much of an idiot as you say, you should have no trouble finding many examples from what I written above.
Sullivan
February 19th, 2010
02:01:25

MJ,

I would suggest that you are not holding the moral high ground when it comes to claims of word games. But, then again, it could be just your proven ability to misunderstand what others say or to look beyond your prejudices to actually listen to what is said. Either way, I find the comment ironic.

If you wish to have a debate about ABA with another blogger by proxy, I won’t be drawn into it. I’ve commented some on ABA here. If you say that the ND movement is against the “majority” of evidence based treatments, I would suggest you offer multiple examples. I apologize that you won’t be given the opportunity to do so here. Consider it advice for the future.

I have no doubt that autistics (as with everyone) can have nutritional deficiencies. This has been discussed repeatedly here and elsewhere. Cholesterol has been discussed by at least one group that I am aware of at KK. They found that a small subset of autistics have a deficiency, as I recall. It is a good line of research and one that could bring a significant benefit. However, there is a difference between “small subset” and “in children with autism”.

Are there possible problems with supplements? Absolutely. There are groups that promote huge doses of vitamin A. Another supplement common in the alt-med community is known to cause seizures in seizure prone individuals if given at too high a dose too quickly. That, by the way, is from communications I’ve had with a clinician at Kennedy Kreiger myself. Unfortunately, the propensity of the DAN or DAN-like groups to misuse any information given forced him to remove the discussion of supplements from a talk he gave.

And, therein lies one of the great problems. The fact that good information helps, misinformation causes harm.

If you want to fight with people about treating legitimate medical conditions, there are places where you can do so. If you want people to discuss how evil neurodiverse proponents are and how they don’t believe in any treatment, there are places for that as well. The discussion makes no sense here. I am open to discussing real topics, but I don’t see the point in fighting your prejudices or your complaints with other people.