Whose Planet Is It Anyway?: Robison Squeaks

Wednesday, March 10, 2010

Robison Squeaks

Autistic author John Elder Robison has agreed to serve on an advisory board for Autism Speaks. Yes, the same organization that repeatedly makes videos comparing autistic children to dead or kidnapped children; that openly declares its goal to "eradicate" the autistic population; that funds causation research to develop a prenatal test; and that pays bloated executive salaries while allotting only four percent of its budget to family services.

Robison says on his blog that he wants to make a difference in how Autism Speaks allocates its research funds. He plans to advocate for the organization to change its funding priorities in the direction of "work that can lead to better lives for today's autistic population."

Good luck with that, buddy. I'm picturing a little rubber duckie bobbing around on the ocean in front of the Titanic. He can do all the squeaking he likes, but the only thing that's going to change the ship's trajectory is when it finally hits the iceberg and goes down.

Labels: Autism Speaks

32 Comments:

I'm hoping it's more like Daniel in the lions' den than Mr. Robison joining the dark syde.

By Usethebrains Godgiveyou, at 12:38 PM
must be good news because Harold Doherty doesn't approve!

By Anonymous, at 2:02 PM
I left him a comment there, but it probably won't stay. The ones that were already there are extremely supportive, in a butt-licky way.

By Clay, at 2:06 PM
Dang! Reminds me that I need to take his book back to the library! I enjoyed the snake story, and the phony-cocaine story,and the magnesium fire story.

I think living in Massachusetts and associating with the litcritters his brother hangs out with have corrupted his original southern crazy rowdiness.

The Northeastern Lit'ry Establishment seem like the savants aboard the Flying Island of Laputa, not noticing anything until their climenoles flap them. There were other books just as good about growing up autistic (if not as funny) published before that one, but the fashionable literary crowd was not told they should notice them, so they didn't.

By Justthisguy, at 2:39 PM
I just kicked it...

By Socrates, at 2:48 PM
"I just kicked it..."

That you did. Rex warned what would happen to the first schmuck who took that position. I hope he doesn't take Judas' way out.

By Clay, at 3:07 PM
This comment has been removed by the author.

By Socrates, at 3:26 PM
[edited for spelling]

One good reason why you're not fit to be on the Board

"Therapies like ABA and RDI have been successful for some on the spectrum"

Where's your Science to back up this claim?

Let me save you the trouble of looking it up - it's all been thoroughly de-bunked by Gernsbacher and Dawson.

Forensically disected and found without exception to fail to make the grade (see their recent letter in The Lancet).

Day One and you've failed spectacularly on one of the most important issues facing Autistics in the US today.

Shame on you.

By Socrates, at 3:29 PM
Oh, Clay? Please leave a comment on my blog. I promise I won't delete it, no matter how mean you are or how much you disagree with me. It's pretty lonesome on what passes for my blog, so even "yelling" at me could be amusing. I might not respond, however.

By Justthisguy, at 3:47 PM
Sarah suggested Robison for the boycott list on my blog. Personally, I don't really think that he seems to be so much a neurobigot as he seems hopelessly naive. Oh yeah, there's one autistic board member in Autism Speaks! Boy, they're in for some big attitude adjustment! And I've got a whole zoo full of purple giraffes that can fly to sell to anyone who believes that.
@Justthisguy: "The Northeastern Lit'ry Establishment seem like the savants aboard the Flying Island of Laputa, not noticing anything until their climenoles flap them. There were other books just as good about growing up autistic (if not as funny) published before that one, but the fashionable literary crowd was not told they should notice them, so they didn't."
Aahh... I always loved Gulliver's Travels. I believe Swift was using that to be satirical of all astronomers because at that time, what they discovered could not be put to practical use.

By TheWiredOne, at 3:51 PM
Well I am never one to go in for group think on the hub and join in a general feeding frenzy.

It would be hypocritical of me to condemn Mr Robison in any case.

As I have said elsewhere, I don't know a great deal about him or his motives here, but I do think this is different from M J Carley's infamous "accord" which seems more akin to the Molotov Ribbontrop pact.

Autism Speaks is on the run, I don't think they are doing this because they want to, but because they have to.

They are not aiming for the likes of hubbers and dyed in the wool Autism Speaks haters, they are appealing to the middle ground and I guess Mr Robison appears a very middle of the road candidate.

I do note however this is an advisory position not one of governance and so it is much easier to control, and being in a minority of one is always a difficult position.

Autistica, in the UK notes an ASD consultant by the name of Danny Beath. I don't know much about him either, other than that he is an autistic photographer and I would guess generally "safe person"

FWIW respected "neurodiversity" advocates in the UK do talk to autistica or is it the other way round, it's practically impossible not to bump into them at various events in London.

I think what Autism Speaks is doing is a damage limitation excercise because they have been badly burnt over the "I am autism" affair, they know it went down like a lead balloon over here, and in terms of the over wealthy publicity hogs they are having to fight the likes of Polly Tomney (who I suspect is equally hell bound for leather on the nowhere trail) for bill board space.

Anyway it is going to drive even more of a wedge between them and the likes of fast degenerating Generation Rescue and the rest of the irrational fringe.

Money always talks, however there are some things you can't buy as J B Handley is finding out, he can't even control his one time supporters who thing that even Dan Olmsted is a closet Neurodiversionista. If you want influence in the establishment it pays not to be too extreme.

By Larry Arnold PhD FRSA, at 3:59 PM
"Mr Robison appears a very middle of the road candidate."

Yes he does, and the usual fate of "middle-of-the-roaders" is - roadkill! ;-)

By Clay, at 4:33 PM
@ JTG - I did read your latest blog before, commented on it on Socrates', when you brought it up. Mentioned your statement:

"Immigrants from every corner of the globe. Excuse me, the country was founded by British Protestants."

So because this country was founded by British Protestants, that means that they should be the only folks who can vote, own property, run for office, everything should be set up to cater to them?

My father's family was French-Irish Catholics, my mother's German-Irish Protestants, and I'm first-generation American, as my parents were born in Canada.

You would leave me out, 'cause I am not exactly an Anglophile.

By Clay, at 4:52 PM
I was diagnosed with Aspergers at age 53. All my life was spent adapting and coping with things I did not understand. If I was a researcher interested in improving the lives of autistic people, I would want to contact people like myself, who have struggled, coped and adapted.

This news does little to help autistics and actually eliminates one of the biggest complaints autistics had about Autism Speaks with a token gesture.

Chances of Autisim speaks funding research to help autistics improve their quality of life . . . your odds are better that your child will become a pro athelete or even that your baby sitter will call 911.

By Dan, at 1:32 PM
I lost interest in Robison when he buddied up to Kim Stagliano. Although I appreciate his "can't we all just get along?" refrain, I do think the line has to be drawn somewhere.

By Anonymous, at 5:21 PM
I do not think it would be terrible if more autistics decided to join Autism Speaks, as long as they did not suck up to the board policy. That way, the representation would improve significantly and perhaps AS could match up with the National Autistic Society.

Do we have to eliminate AS completely, or can we just reconstruct it? Does the name "Autism Speaks" offend anyone the way "Cure Autism Now" might? Personally, I am only offended by the content of the organization, rather than the trademark.

As for John Robinson, I would avoid attacking him. Just because he is not exactly pro-neurodiversity does not mean he does not have an important insight that might help change the way AS depicts us. But just having him on the board is not enough to make an effective change. What if the rest of the staff will still dominate over him?

By Unknown, at 1:17 AM
Earlier today, I read Doherty's post about Robison. He quotes John extensively, and I actually liked what John said, although Harold certainly didn't.

By Clay, at 1:40 AM
Long ago I concluded that Mr Robison is either naive or only concerned with celebrity when I took a look at which websites he was linking to on his blog. I'm so unsurprised at this latest bit of news.

I thought Mr Robison's book was an entertaining read, but I can't take too seriously a man who claims in his autobiography to have some impairment in body language, while on another page observes that he thought there was something sus about a work colleague because he was smiling all the time.

Any autobiography written by an autist who is really as mindblind and faceblind and impaired in "reading people" as in the standard stereotype of Asperger syndrome would have to be a spectacularly dull and unenlightening read, because it would be just one tale of "I don't understand what happened" followed by another.

By Lili Marlene, at 4:10 AM
About Autism Speaks, I feel that trying to "reform" it is like trying to fix a table made out of rotten wood. In order to fix something, there has to be some goodness as a foundation to any repairs. It is not the case with Autism Speaks; the organization is too full of hate to be worth fixing in the first place. We would be better off ensuring the disposal of the rotten table rather than attempting to fix it and keep it around.

By TheWiredOne, at 8:10 AM
Each leg of that rotten table could be replaced with a fresh leg one-by-one, then we could switch out the rotten table top with a new board, compost all the rotten materials, and there you go--there is a new table.

Of course this would mean whoever runs the organization would have to change all the policies, fire all current staff one-by-one, find replacements, then completely remake the organization. You are right, it is doubtful that Suzanne Wright would give a 9 to fix her corrupt firm.

I just wonder what NAS was like originally. Did it begin with an agreeable foundation?

By Unknown, at 2:15 PM
@Catatab_Tabimount: Even the way you state is still complete disposal of the rotten table!
And about what you detail in the second paragraph about the original employees being fired and replaced will only happen in Utopia. While we'd all like it to happen, it obviously won't.

By TheWiredOne, at 4:13 PM
Gott in Himmell sadder but wiser (but a long way off yet)

It's my grandfathers axe innit, I replaced the blade three times and the handle twice but it is still the old axe.

Well that is a philosophy as old as time, go google ship of Theseus.

Now I am not convinced that Mr Robison is the guy to do it, but I wouldn't say that Autism Speaks can't be reformed, after all it's not what its tributary components NAAR and CAN were and has to change to survive.

I have a lot of experience but that ship of Theseus or Grandfathers Axe that was the NAS is not the same organisation I joined before I became a board member.

It may be that it is harder in the US to change policy in the dominant hegemony. I have been perhaps unfairly critical of Stephen Shore with ASA, but maybe he was up against greater odds than I was.

I suppose though in fairness there is a little that is different about me in that I am nobodies token and prepared to take shit from both sides to achieve something that is more important than me.

If Mr Robinson really wants to do it, he has to be hard, he has to care not for what people think, he has to take abuse and sometimes give it. It's not an easy ride.

But if he can't face up to the Wrights and tell them to there face what I have told them, and have been warned by the police that I really ought not to, and still do it then Mr Robison you will be a graduate.

By Larry Arnold PhD FRSA, at 5:04 PM
@The author: About that example of your grandfather's axe still being "grampa's axe," it is still that, despite the replacements because it has that name and that significance. However, in my case of comparing Autism Speaks to a rotten table, I'm saying that given the circumstances at hand, it would be impossible to reform Autism Speaks, even if it became a pro-neurodiversity organization under a different name. The only significant change that can possibly be made is to eliminate Autism Speaks.

By TheWiredOne, at 7:45 PM
This comment has been removed by a blog administrator.

By John Best, at 8:01 PM
Clay, I realize we don't get along all that well, but could we form an alliance of convenience to do something about Foresam? That guy just chaps my Cracker Ass, as Acidman used to say.

I'm not really much of an Anglophile, seeing that some of my ancestors fought a bloody war to separate us from those suckers-up to authority who are now laying the police state on thickly with the trowel of CCTV cameras, ASBOs, etc, and so forth.

By Justthisguy, at 12:54 AM
@ JTG - We're not enemies, not at all. You can be a Republican, I don't care, and won't even hold it against you. We have other things in common.

But I disagree that we have to do anything about Best. His site is kinda blocked, you have to agree to something to see it, and it's not worth that much trouble. He's not convincing anyone but the usual bunch of fools, so I don't see any need to do anything.

Ooh, apropos word verify - incents

By Clay, at 1:20 AM
Well I wonder if the Autism Speaks site will allow my comment through in that I have extended an invitation to John Elder Robison to sign up for my ethics campaign.

The usual suspects of Doherty, Best et al need not apply there opposition is known and recorded.

By Larry Arnold PhD FRSA, at 9:16 AM
Lili Marlene, I am not sure what you are implying in your post.

Are you implying that John Elder Robison is not autistic enough and merely posing in his autobiography, by lining up his self observation with the DSM ?

- or -

Are you saying that by aligning himself to such traits (which you do not believe he displays in reality) he is on a hiding to nothing because they are not in any case the real traits of "true" autism whether he has them or not?

I am guessing that if you mean the second case you are implying he is a poor spokesman for autism because he does not even understand it in himself ?

It concerns me that frequently we are denied the right to comment on our own condition because by doing so we effectively negate it, in that we are communicating and showing insight. Its an ontological argument that fails from a scientific perspective because all it concerns itself with is perpetual denial, a denial that serves specific agendas of power and control.

By Larry Arnold PhD FRSA, at 10:02 AM
Sadder but wiser. I realise the difficulty of always arguing from analogy, but consider this.

If on every exchange of blade the axe has been refitted with a blade of superior steel or better temperament, and if the handle has been replaced by one of more durability, then the axe has changed to the extent it has become better adapted to its use as an axe.

There are many instances of organisations who are unrecognisable in terms of what they are currently saying to the patronising positions they took originally. Often it takes a generation for such change to occure, when the original board contains few enough of the founders to influence current policy and decision making, as can be observed with the NAS.

Anyway outside of Autism two examples: The Spastics Society, which became "scope"

And the Royal society for Mentally Handicapped Children which became "Mencap" and permits intellectually impaired people on it's board.

Autism speaks is yet young to change completely but the rather rapid turnabout of Autistica who have dropped the original name because they are well aware of the negative associations it has for them, it gives reasons for hope, just don't expect it overnight.

It is still true that Autism Speaks by any other name would not ever become the same as any organiation started and founded by Autistic people ourselves, but it has to be added that within our own movement there are organisation which have not even progressed to the stage where changes in the board could effect changes in policy because they are still proprietry and dependent upon the good will of a founder. ANI for instance.

By Larry Arnold PhD FRSA, at 10:09 AM
The Author asked me:

"Are you implying that John Elder Robison is not autistic enough and merely posing in his autobiography, by lining up his self observation with the DSM ?"

How autistic is "autistic enough"? Autism is a group of different brain-based conditions which has been characterized as a spectum that blends into "normal". I consider anyone who has any genuine autistic trait to be autistic.

"Are you saying that by aligning himself to such traits (which you do not believe he displays in reality) he is on a hiding to nothing because they are not in any case the real traits of "true" autism whether he has them or not?"

Maybe some or most autistic people are unable to read body language, but clearly many are not impaired in this way. I agree with much of what Tyler Cowen said about autism and social intelligence in his interview at Wrong Planet. If there's any "true" autism, I'd say it would be a type that is primarily caused by high prenatal testosterone, but I'm also happy to admit that autism might also be validly described as a collection of different brain and genetic syndromes. I think Mr Robison has simply gone along with much of the conventional thinking about autism so that his book will appeal to a wide audience. And it has.

"It concerns me that frequently we are denied the right to comment on our own condition because by doing so we effectively negate it, in that we are communicating and showing insight."

I know, this is a worry. I've met intelligent autists who do seem to have trouble communicating and don't seem to have much insight into social stuff, but when they do figure things out, it is often with a clarity and logic that others can't attain because autists are often unburdened by many of the well-known cognitive biases that are normal in human adults. I'm sure insight has a lot to do with basic level of intelligence and also the level of social experience, which can be incredibly limited even in old and female and smart autists.

I'm not saying Mr Robison can't represent autists because he is either too incapable to write such a book or is not really autistic. I was trying to explain that if there really are people who fit the whole stereotype of AS, their autobiographies should be boring reading. Who knows how many autists out there are incapable of writing an entertaining autobiography, despite the strangeness of the life experiences? A dose or two of Nodose is definitley called for when tackling Tammet's memoirs.

By Lili Marlene, at 5:29 AM
Well the last person to do a hatchet job on autistic autobiographies was Frankie Happe back around 1998 some time, and whilst she has since recognised that was an unscholarly attempt in retrospect the paper remains in print in later editions unfortunately.

I have seen others such as Kristina Chew attempt to derive some cognitive nuggets out of autistic style in writing, but it's all bull, part of the circus which demeans and differentiates us by reference to what it is supposed we can't do, and then when we do do it, it is either Dr Johnson's performing dog syndrome, or put down as primitive or lacking in conventional literary style.

I don't read most of the autobiographies that have been churned out by the Jessica Kingsley machine lately, because after a while they do all seem the same to me, individual differences notwithstanding, it's just not what I enjoy reading, after Lianne Holliday Willey which was probably the last I read it is I confess a big yawn for me.

My autobiography got rejected because it was either too boring, too illiterate, or too post modern, in that I did not write it sequentially. I'm not bothered now, I'm past that self narrating zoo stage.

In some sense maybe, as has been said of the pulp bio's of sporting heroes that nobody should seriously consider writing there autobiography until they are past 50. (by which time they will have forgotten most of the details and be well into there 'anecdotage')

By Larry Arnold PhD FRSA, at 7:32 AM
I have faith in Robison. If they f' it up, we know he tried. Here's an example of what he is up against:
http://autisminnb.blogspot.com/2010/03/autism-speaks-rejects-questions-about.html

By Ultraviolet, at 6:22 PM

Whose Planet Is It Anyway?

Wednesday, March 10, 2010

Robison Squeaks

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