Monday, February 22, 2010

Interesting essay by Ari Ne'eman

I see that lead neurodiversity proponent and ASAN president Ari Ne'eman has published a new essay One which the autism society of america newsletter the advocate solicited and then apparently rejected for some reason. Ne'eman starts out by saying that autistics have not been consulted on matters pertaining to autism. This is in spite of Stephen Shore's appointment to the IACC as well as his involvement (and John Robison's as well) in reviewing research grants. As well as Ne'eman being allowed to testify before the IACC when he was one of the people who protested the combating autism act out of which it grew. Ne'eman writes:

The object of autism advocacy should not be a world without autistic people — it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers.

As far as I know Ne'eman has not elaborated on what those rights are and on how they can be achieved without curation. There is no way that an autistic person can have a better quality of life without the medical intervention which currently does not exist and that research funding is attempting to find that Ne'eman wants eliminated.

Ne'eman then gives his take on Lovaas and ABA:

Even a cursory glance at the magazine of the Autism Society of America reveals many such examples, with advertisements for vaccine recovery and Applied Behavioral Analysis, whose initial aversive-heavy experiments claimed to bring half of all children subjected to its methods to "indistinguishability from peers." These programs lack the research foundation they claim. For example, Ivar Lovaas' promise of recovery through ABA was based on the theory and methods used with "feminine boys" at-risk for homosexuality (Rekers & Lovaas 1974). That fact alone should give anyone pause. Meanwhile, those who peddle these pseudo-scientific treatments collect hundreds of thousands of un-reimbursable dollars from families justifiably desperate for a way to secure opportunities for their children

It seems strange for him to say this now in light of the fact that ASAN has been a proponent for "positive behavior supports" This is in spite of the fact that Lovaas' provides no evidence for efficacy of positive behavioral supports and was not able to get any of his published results without aversives.

Ne'eman and ASAN have also been advocates for full funding of the IDEA, which in large part, as far as autistic children are concerned, ABA is one of the predominant treatments that parents seek funding for under this law and the bulk of litigation against school districts entails parents attempting to pay for these therapies.

For anyone who regularly reads Michelle Dawson's TMOB comment board it would appear that Dawson and ASAN are at loggerheads over statements that Dawson has made that were critical of ABA.

Next Ne'eman goes on with the old fear mongering neurodiversity lie about genetic research leading to abortions:

What do we really want? Is it autism prevention? Given that research has shown that the autism spectrum is predominantly genetic in origin, the most likely form of prevention would be that of eugenic abortion, similar to what we have seen with the 92 percent rate of selective abortion in the Down syndrome community (Mansfield, et. Al. 1998)

It should not be necessary to comment on the apples and oranges comparison of autism and Down's syndrome but here goes anyhow. Down's syndrome involves an abnormality in one chromosome. The genetic etiologies of the multitude of phenotypes which are termed autism are quite varied and many different abnormalities on genes and chromosomes have been found. There is also the fact that interactions with the environment cause these as well so a prenatal test for autism is not likely on the horizon for a long time. By the time enough about the genetics of autism is thoroughly understand well enough to abort an autistic fetus it is very possible that the DNA could actually be altered so that the child will be typical rather than be sick and crippled by autism. Down's syndrome (at least at one time) was a very different condition from autism, with the chance of them being much more severely impaired than many with autism, also a propensity to develop congenital heart problems and die very early. The study (Mansfield) that Ne'eman cites only reports on various papers that show rates of pregnancy terminations in the 1980s and 1990s. Ne'eman offers no evidence that Down's fetuses are still aborted at the same rates.

Most interesting of all is that many ND's are politically left of center such as Obama supporter autistic bitch from hell. My chronic adversary and harasser Clay Adams seems to have left of center politics. There are probably many other examples. It is likely these individuals support Roe vs. Wade and would have no qualms about allowing a parent to abort a fetus that was conceived due to improper birth control or parents who just happened to change their mind and not want a child. It would seem members of neurodiversity value a child's disability over his humanity.

Ne'eman talks about giving autistics a chance to hold down a job, but naturally offers no solutions, other than claiming there is an alternative to finding a cure or doing scientific research to find better treatments. His solutions are to say social unpleasantries should be overlooked in the workplace but how realistic is that? Like Clay says, wish in one hand shit in the other and see which one fills up first.

Ne'eman goes on to cite a study which shows that autistic people when making monetary decisions involving risk are less likely to be affected by risk and certain social cues. Ne'eman shouts this study out as showing that autistics have strengths that can be capitalized upon in real world situations. However, he neglects to mention that these were high functioning autistics who were matched with normal controls on IQs whose intelligence was well above average (verbal IQ 112, performance IQ 109). These persons also had similar v IQ's and p IQ's unlike the 40 point discrepancy in myself and possibly discrepancies in many other individuals. Can we really assume the results of this study can be applied to all autistics as Ne'eman implies.

Also, what Ne'eman neglects to mention is that though the results of this study suggested that the autistic subjects might be less influenced by question framing biases and had more attention to detail that there was a flip-side. That also it suggested impaired emotions and impaired ability to deal with social situations. So in reality the autistic strengths were offset by the autism weaknesses which, assuming this study could be applied to any real world phenomenon, that it would produce a zero sum result in terms of autistic functioning. Ne'eman only mentions the authors findings of strengths in the study but neglects to note the autistic weaknesses that the study demonstrated.

The old neurodiversity line about autistics being able to do just fine without a cure is extolled:

The oft-cited concept of "recovery" from autism is not only scientifically unsupported but also dangerous in that it removes the very supports that made progress possible for many people with autism. Moreover, by equating developmental progress with a change in the fundamental character of our brains, the recovery concept denies the natural growth and skill acquisition that occurs for all individuals, regardless of disability. It is unreasonable to assume that autistics will be the same at age 30 as at age 3.

No I was not the same at age 30 as age 3. However, at age 30 I still had very bad impairments( which I still have at age 54). Of course this excludes people like John Belmonte over the age 30 and unable to talk or Sean Lapin or Noah Greenfeld, both well over the age of 30 and nonverbal severely autistic with Noah being under institutional care.

Ne'eman then spits out the old neurodiversity bullcrap about how none of us are independent in that we don't hunt for our own food or build our own homes etc. However, there is a difference between dependence and interdependence. In interdependence the lawyer who can't build his own home or hunt his food makes money so that he can pay for these without the aid of the state. The home builder who needs a lawyer pays a lot of money taking Abe Lincoln's old advice about a fool for a client. This is different than autistics who collect SSI being dependent on the state. So basically Ne'eman is saying it is just fine that autistics are impaired and can't do for themselves, not the mention of the humiliation of having to be dependent on parents or on the state, etc.

Ne'eman goes on to speak about his position on whether or not autism is a disability:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the "cure" approach is not the best way forward for securing people's quality of life.

Certainly a different statement from his previous "difference is not disability" statement that he wrote in a previous essay which was later edited to something else after gadfly called him out on it. Of course he still gives himself some leeway in claiming that autism is just as much a social disability as a medical one. Naturally Ne'eman provides no alternative to a cure for securing people's quality of life. He promotes the status quo for example by lobbying for full funding of IDEA. I don't think that even the most rabid proponent of special education for improving the quality of life for those on the spectrum would claim that it would do the same thing or even close to a cure.

Ne'eman goes on to make this statement on autism being a disability which would contradict the first:

Second, we should in every instance consider the fact that it is often social barriers rather than disability itself that pose the problems we face.

No, my handwriting impairment, my phobias, my inability to perform the quality of work expected of me to hold down a job and my social problems that prevent me from having friends are not a social barrier. The same goes for my self-stimulatory behaviors and inability to get things done. They are strictly impairments in and off themselves. Naturally Ne'eman gives no solutions to ameliorating these social barriers except a rather absurd comparison of anxiety to autism. Previously Ne'eman (who as far as I know has never had paid employment of any kind in his life) suggests eliminating social pleasantry as a criterion for hiring. So we are to expect employers to keep employees who run amok in the work place who throw tantrums or who cuss the boss out?

Ne'eman gives augmented communication as a solution for nonverbal autistics neglecting to provide evidence or studies that it works for every nonverbal autistic or even the majority of cases.

Ne'eman ends his essay by taking the usual shot at autism speaks and claiming that the cure philosophy has failed us.

Ne'eman still gave the Isabelle Souleries study funded by autism speaks a shoutout, claiming it proved that autistics aptitudes are underestimated.

On a final note of this lengthy blog post I will concede the search for a cure has not yet produced fruitful results. That does not mean it won't at some point in time. Even if a cure is not possible in the foreseeable future perhaps science can provide better treatments at some point in time.

In light of his inevitable appointment to the national disabilities commission I will look forward to seeing whether or not Mr. Ne'eman can actually produce these results in autistics that he claims possible without a cure. After his appointment is confirmed by the senate he will certainly be in a position to do so. Whether or not Ne'eman can produce his promised results only time will tell.


Droopy said...

I read (enough to get the gist) Ne'erman's essay to get the gist, didn't read all of your text yet Jonathan sorry, have weak eyes sometimes they need a break

Ari Ne'eman's words

Its the same tired old rhetoric of a bunch of people complaining they re being 'talked over' (when they really aren't) while they themselves then turn and talk over yet again still over other people, the most left out of all in this twisted little pecking order beurocratic game they're all playing ... about us without us

maybe its not just my eyes that need a break, so here's a little one

(things like this are essential to survival)

as is remembering, even when they are so busy taking our voices with all their words, deciding and defining for us who and what we are

farmwifetwo said...

I can never understand why being dependant on someone else for food, money, shelter, clothing... etc... is just a "difference" and why this dependance is "ok" to keep the upper end of the spectrum - the Ari's of the world - that don't need those supports able to say "autism is glorious".

I don't understand why it's only autism - that I can tell - that does not work to help it's "members" (can't find the word I want) become more independant. Why there's this huge fear about if they do become independant and no longer "autistic" this is a bad thing.

I love the "social skills shouldn't be part of employment" crap. It's "ok" for an autistic to verbally and physically abuse someone... but not ok for the rest of society to behave that way. It's like the fact that if you're white you can be abused, but you have to kiss up to all other colours, cultures and religion.

Works both ways... ::eye-roll::... well it should.

Droopy said...

I was just sitting here thinking and recalling a slogan that was going all around and all the rage for awhile few years ago (showed up touted all over on their T-shirts etc, you know they have their 'autism gear' entire outfits and trinkets devoted to celebrating and reveling etc) and this one was:

"Not being able to speak is not the same thing as not having anything to say"

It was bogus and really fostered by both the Baggs fiasco and a bunch of "Facilitated Communication" stuff (all of which is paramount to treating Autistics like free Neurodiversity billboard space)

since it seems now that not being able to speak means we shouldn't even be seen or our existences acknowledged at all.

Neurodiversity has really gotten worse over the years

Somebody keeps giving them inches and they keep taking more miles each time and are becoming more and more the monsters all the time.

I have to wonder, would/will they ever be satisfied?

What would it take, I mean really, for these people to stop feeling so put upon, to no longer have a driven urge to be pissed off band together for this or that reason...

and the fact that I don't see them ever being satisfied, ever, no matter what

I see them as just being in the eternal perpetual pissed off mode they're in, never happy, that 'discontented child cries for snow" thing is quite right
spoiled monsters becoming bigger more spoiled

I also got a chilling (woke me up out of my sleep) fear about just what all this shoving us off the spectrum (I read AutismNB, father of Conner's page about the DSM V) and this scares me

I haven't found the words just yet to articulate what that vision was/is, but its bad

I mean as in direct planning to literally 'make us go away'

so that there are literally no autistics in existence, only these happy shiny "New and Improved"

I'm really really not so sure that Neurodiversity and this DSM V and this idea of eventually 'moving us entirely off our own spectrum' isn't part of a bigger plan to well.. eventually kill us that are seen as too defective

I can't help but think this, all the parts in government and socially and media and etc
all this triaging and exclusivity for the higher end isn't a great deal unlike the 'social preparation' and mental readiness/acceptance that was intentionally built up and came before, you know, the eventuality of the gas vans before WWII

of course it wouldn't be exactly 'gas vans' but the same thing, same concept.. to eventually quietly intentionally have the end goal to just kill us

our world is reverting rather quickly back to a 'useless eater' mentality

I've got a very bad feeling we may be being worked over for an overall over time eventual goal of that sort.

Frankly, John Best's theories don't sound half as scary and I hope he's right instead of me.

Still haven't' heard Jonathan's theories on what the hell he thinks is going on

Stephanie said...

Those like Ari Ne'eman and many others who support him don't need to be "recovered." They pretty much already are!

Perhaps, due to their impairments, they fail to realize that most others DO need to be "recovered," at least to a level like him.

If every with an ASD was like Ari Ne'eman than ND wouldn't really be a problem, would it?

But everyone with an ASD definitely isn't like Ari.

Ari is probably the highest functioning ASD person I have ever seen. He can easily navigate the complex world of Washington and the media, at what, only 22? A person with an ASD being a politician? Seems completely incompatible but I suppose it is possible in very rare cases.

And, at only 22, he also does everything while being a full-time student at UMBC (while also maintaining a high GPA, I am sure).

What he does would be incredibly difficult for someone who had no disabilities and was highly intelligent. But he still manages to do it even with his disabilities (whatever they are). I imagine he'll probably end up at some prestigious law school, such as Harvard or Yale (or whatever other law school is considered prestigious).

This is one reason why I think Ari isn't a good "role model" for most with ASDs: it is completely unrealistic to think that most people with ASDs can come anywhere near that level.

It is completely unrealistic to think that most people, in general, can come anywhere near that level.

Not even the highly successful and intelligent Temple Grandin is able to navigate the media and everything else as well as him.

Anonymous said...

As a mother of a severely autistic, self injurious son, I have been rapidly attacked by some of these neurodiversity madmen and women who absolutely hate my guts for daring to show one of the most severe sides of autism on You Tube under "kgaccount" or go to "autism epidemic out of control" They have tried to downplay my son and even had the nerve to question if I'm making this up "by proxy". This is truly illuminating to me and other parents of severely autistic children who struggle on a daily basis with serious behavioral and medical issues. The Ari Ne'emans of the world are couterfeits. Imposters who are posing as spokespersons for autism but in fact are not autistic and are so far removed from the realities of real severe autism, they will villify, sabotage or otherwise mock people like my son. For that, I will take note. They have declared war on people like me and my son because we threaten to expose the sham operation they are pushingn on the public. Yes, there are high functioning autistics but recall the Rain Man...that was an excellent portrayal of HF autism. Temple Grandin, though she appeared autistic in childhood, is severe aspergers. She's a great woman, but I don't think she represents true autism. Also, there is a person named Amanda Baggs, a woman who, according to some research, suffers from "factitious" disorder, in essence, she's not really autistic, it's in her mind. Then there is Donna Williams who is yet another woman who has repeatedly said she's an "artsy autie" or some kind of cute way of presenting herself, and the woman is in no way real autism. It's just embarrassing for me as a mom to see how the public is so easily fooled by these con artists or bless their hearts, perhaps they have serious psychological problems as in Amanda Baggs and Williams. Ne'eman is just Aspergers, that's not mental illness. That is a real and worthy cause to embrace, but he is not autistic since he obviously ignores and hates people like me and my son for exposing the severe sides of autism he and others like him DO NOT want the public to see. These folks have gone on my you tube account and obsessively given thumbs down to anyone who supports me. Gee, how "autistic" of them, as one person commented. Yep, that says it all. A really autistic person wouldn't have this kind of malice or narcissim or skepticism in them. A terrified Aspergers person posing and speaking for all autistic who hates my son's type of autism and doesn't want to be exposed as a sham autism person, would though. These people have pissed off a lot of parents in the autism community who are dealingn with serious issues. And they think by bullying us away we will go away? Not happening.

Stephanie said...

I am similar to Temple Grandin: "classically autistic" as a child, pretty severe, but somehow ended up being high-functioning.

I also believe Jonathan is like that as well: a non-verbal, feces smearing child who ended up being who he is now: high-functioning, able to be employed for years...sort of..., managed to graduate from college, etc.

I have met the criteria for "Autistic Disorder."

But so does my profoundly LFA cousin.

And we are obviously very different.

As an adult I have been re-diagnosed with "Severe Asperger's/High-functioning Autism."

I have no problem saying I have "Severe Asperger's" rather than "High-Functioning Autism" because I have a family member who is profoundly LFA and can see that, while we share a few things, we are very far apart.

I’m “high-functioning” and would do better with others who are “high-functioning” so does that mean I should get an “Asperger’s” label? But I had a speech delay and met the criteria for “Autistic Disorder,” so, technically, I CAN’T get an AS label even though I have been given one for the sake of practicality. But should I be given the same diagnosis as non-verbal adults who require extensive, 24 hour care even though I am much more capable? Should I be given a “PDD-NOS” diagnosis which really is quite confusing and doesn’t mean anything? At least Asperger’s is specific: PDD-NOS can mean just about anything. Some with PDD-NOS diagnoses are more severe than those with “Autistic Aisorder” diagnoses and some are too mild to meet the Asperger’s diagnosis so they get PDD-NOS. So, basically, PDD-NOS doesn’t mean anything and it doesn’t guide treatment very well: you could either be very profound or extremely mild with a PDD-NOS label.

I read a thread on Wrong Planet about the profoundly autistic boy Anon is referring to and was appalled when I read that some thought she was engaging in "Munchhausen's By Proxy" or whatever, but I didn't feel like being attacked at the time so I left it alone.

SM69 said...

Whilst I of course agree with your views that Ari or ASAN cannot effectively advocate for most autistic people, being unaware of their true needs, especially those who are less functioning, I feel that fuelling more anger in the autism debate is unhelpful. We know what needs to be done to help autism as a whole, including those with Asperger, interventions are needed right from the start, better services, awareness, better accuracy in diagnosis, and a more receptive and accepting community. Any form of extremism or loathing is unhelpful, Ari’s ones as well as the ones against him. This constant anger debate distracts us from the true issues, and it is endless. Where is that leaving us and those who cannot even discourse on these issues? Ari cannot win this argument, even with his family support, because the flaws of his argumentations are obvious and real; these are his true adversity. Consequently, there is little need to fight such a lost cause, by comparison to the real needs for a real and concerted support to the autistic community.

John Best said...

Go to my blog and read the post from 6/24/09 about Ne'eman. It explains where these psychopaths came from...Pharma.

Droopy said...

KG, first, welcome to "Autism's Gadfly"

I knew as soon as I saw your videos that you and your son would be a new focus of target and attack and what would be the (by now to those of us who've been dealing with this for years) quite predictable response from the collective that is "Neurodiversity."

Perhaps the only part of their behavior even I found surprising and a new low (even for them) was accusations that amount to suggesting either you or Jamey are faking or having Munchhausen's

Not only is that quite ironic given the particulars of this set of accusers (particularly given their own situation with Amanda Baggs et al)

When these people say things like they have to you and Jamey, please know that there is some good to come of this (yes, incredibly)

No amount of spewing public relations and propaganda which at its best only re-states the obvious (and an obvious they have just patently horribly failed to live up to)

can counter this clear demonstration

They are exposing themselves to the world and in no uncertain terms as to the sadistic self-serving monsters they really and truly are.

I keep thinking and hoping they and this insanity can only swing so far, wondering how out-of-hand does this have to get before its enough, its over and the pendulum starts to finally swing back towards reason, decency, people not standing around allowing, encouraging even, a large group of perfectly capable people to constantly make their assaults on a group of voiceless profoundly developmentally disabled people?

When in hell did this ever become remotely acceptable behavior, let alone state sanctioned approved and supported??

what a time we're living in

What will it be next?
Public funding for thugs who want to go stealing service dogs and canes from the blind and dumping paraplegics out of their wheelchairs?

I keep hoping that somebody out there, maybe these very same government officials, media-pervayors and on and on who could have been the ones to put a stop to any of this at any time but have actually gone on to support this will take their blinders off and have a look, a really good hard long look at this and instead of fostering it, do something to put a stop to it.

Until that time,
Welcome also then, KG and Jamey, unfortunately, to the not-so-hidden nasty underbelly of Neurodiversity

Anonymous said...

"...Previously Ne'eman (who as far as I know has never had paid employment of any kind in his life) suggests eliminating social pleasantry as a criterion for hiring. So we are to expect employers to keep employees who run amok in the work place who throw tantrums or who cuss the boss out?..."

"...I love the "social skills shouldn't be part of employment" crap. It's "ok" for an autistic to verbally and physically abuse someone... but not ok for the rest of society to behave that way..."

...and not ok for the rest of society to have anything to say about the abuse.

The idea seems to be that they're anti-social-skills altogether.

"What would it take, I mean really, for these people to stop feeling so put upon, to no longer have a driven urge to be pissed off band together for this or that reason..."

What would it take? Maybe not only society accepting a lack of social skills (like cussing out one's boss) but society demanding a lack of social skills (like a boss going "my employee cussed me out, but I shouldn't think what my employee meant had anything to do with that cussing" instead of "my employee cussed me out, my employee is most likely hostile to me").

Droopy said...

More "fun with Neurodiversity" on display here

and here

and here is an end point excerpt from my (currently) latest post, as while in this instance I'm speaking specifically of one "Phil Gluyas," it really does bear relevance, speaks to exemplifies the very sorts of games I've seen so many Neurodiversitees just love play ("Phil" is great and unique only in that he's so 'out with it'). The last paragraph (bolded here) is 'the thing,' really:

I especially love the out in the open "Droopy must be silenced' 'remarkage' that's been on display.

You're even afraid of my seeing your/his blog of BS? (I'm still trying to sort just what the threat of 'aha I have her ISP!' is even supposed to be all about)

but regardless,
Phil you never fail to let me down, you are just so good at demonstrating right out in the open with just what's wrong with Neurodiversity -- and you.

hint: Phil you do more single-handedly to discredit and expose both Baggs and Neurodiversity than anyone I know or anything I could say -- keep it coming!

and here in the US anyway, people are allowed and able to travel and visit and not limited/restricted to stay within their respective home state.

Can we conclude then from Phil's makeshift 'assessment' that somehow this is not the case in Australia? Or Phil, are you on some special restriction, wearing a house-arrest ankle bracelet or something? (Just asking)

Here's the thing, Phil and Phriends, and why yes, you should Phear me:

I don't have to be a wordmeister, I don't have to be a genius, I don't have to be high functioning, I don't have to be anything at all except for but one thing

-- truthful

Anonymous said...

"No, my handwriting impairment, my phobias, my inability to perform the quality of work expected of me to hold down a job and my social problems that prevent me from having friends are not a social barrier. The same goes for my self-stimulatory behaviors and inability to get things done. They are strictly impairments in and off themselves."

Lemme guess, some people do think it is a social barrier because they'll accuse someone of discriminating against you for your autism unless s/he:

* correctly understands what you meant to write no matter how little your handwriting resembles the shapes of the symbols in the written language(s) that s/he can read

* automatically predict your phobias and provide alternatives ahead of time (for example, if you have a phobia of elevators then knowing it ahead of time and installing an escalator so that you can get upstairs just as quickly as you could without an elevator phobia)

* be satisfied with whatever quality of work you hand in, no matter how low, if s/he employs you

* stay in touch with you, invite you for social gatherings, and/or have sex with you no matter how little s/he enjoys how you treat him/her...