Tuesday, April 03, 2007

The autistic person's burden

The major media have been buzzing with stories about the crushing burden autistics place on non-autistics. This reporting stems in part from the journal publication of data also published in a 2006 book (with the unintentionally ironic title of "Understanding Autism"), summarizing every autistic life as a vast financial liability.

This is also partly the fanfare surrounding the release of Canada's Senate Committee autism treatment funding report, which is poetically called "Pay Now or Pay Later".

This title resonates with the advertising slogans of "diagnostic teams" in India, as recently reported in The Times. These diagnostic teams promise to eliminate disabled children--those lacking a Y chromosome--before birth, thus entirely relieving families of the massive financial burden of raising a female child. And they provide a compelling cost-benefit analysis in their slogans:

"pay 600 rupees now, save 50,000 rupees later”

The media have also been buzzing about the latest Autism Speaks creation, the Interactive Autism Network. This network, like its sponsor, was created without any autistic input whatsoever, and is likely to continue that way. Non-autistic parents of autistic children, in contrast, are welcomed as essential and expert collaborators.

In her most recent editorial, The True Meaning of Research Participation, Association for Psychological Science President Morton Ann Gernsbacher has written a powerful antidote to these two related problems: the wholesale exclusion of autistics from any decisions related to autism research, and the escalating rhetoric relegating autistics to the role of non-autistic person's burden.

Here she provides insight into how these two aspects of prejudice may go hand in glove:

It takes just a cursory stroll through history to view the shocking collage of groups deemed incapable of stepping up to the research plate. In 20th century psychological science alone, we have Mary Whiton Calkins, the brilliant protégé of William James who, by lack of a Y chromosome, was denied her PhD at Harvard (but who later became APA’s first female president). It’s quite unlikely that APA’s founder and first (male) president, G. Stanley Hall, believed that members of ethnic minority groups would be suitable research collaborators, given his disturbing attribution of “adolescent races” who “would be better in mind, body, and morals if they knew no education.”

Maybe we shouldn't be surprised that when females and non-whites were written off as unqualified to collaborate in research, they were also judged to be burdens and dependents on their natural superiors--as in "the white man's burden".

While it makes me blush, I strongly recommend that you follow the link to Dr Gernsbacher's column and read the whole thing, and contemplate who is a burden on whom.

No one has yet calculated the costs to autistics, and to society, of the current widespread autism advocacy effort to create a world where there are no autistic people at all.

The truly staggering costs of this effort, and its consequences and byproducts, are unlikely ever to be calculated. After all, autistics are now routinely judged as having and being nothing to lose. The only way we can possibly benefit society is to stop existing--surely, society can pay even less if the existence of all autistics is prevented? Surely society would be better, if only us suboptimal types who are dragging down society receded into history and vanished?

Unless autism advocacy--the autistic person's burden--is successfully supplanted by genuine science- and ethics-based efforts to assist autistic people, we will never find out what autistics can achieve and contribute, in a society where it is okay to be autistic.

24 comments:

daedalus2u said...

Actually, the contributions of ASD individals is well documented. Einstein, Newton, virtually all of the great scientists were on the spectrum.

Asperger said "It seems that for
success in science or art a dash of autism is essential."

Removing ASD traits from the population will impoverish it such that what remains will no longer be human.

daedalus2u said...

Just so you know, blushing is caused by NO.

Jennifer said...

More publicity about the Senate report is in the Globe and Mail today. There are a few bright spots.

"Dr. Bryson said it is not clear if investing in behavioural therapy like ABA/IBI in childhood will ultimately result in adult autistics who are more able to be independent and to work.

"But we need to ask the question: Does investment early on have significant economic benefits later?" Dr. Bryson said."

So at least one scientist is asking relevant questions.

http://www.theglobeandmail.com/servlet/story/LAC.20070403.HAUTISM03/TPStory/?query=autism

Michelle, congratulations on the Gernsbacher editorial. I know you are too modest to mention it, but it is very laudatory and supportive of your own research contributions.

Phil Schwarz said...

I've often heard cure-seeking parents say that what the autism community needs is a Jerry Lewis.

I disagree. I think we need a whole bunch of Kay Redfield Jamisons. Dr. Jamison is one of the world's experts on bipolar disorder -- and she is bipolar herself.

Dr. Gernsbacher's column identified a few. (Don't blush too hard, Michelle :-).)

We need more.

Jannalou said...

I agree with Phil. The sanest experts on ADHD have it themselves, too. (Hallowell and Solden being my personal favourites.)

Funny how that works.

jypsy said...

Daedalus2u, your NO stuff is quite beyond me but making a statement like "Einstein, Newton, virtually all of the great scientists were on the spectrum." will make me very skeptical of all your other claims. If this is what you call a "fact" how am I to believe anything you say is anything but pure speculation?

Very nice article, congrats Michelle for the very nice pat on the back, and to all others named there.

Autism Reality NB said...

Ms. Dawson

Do you dispute the fact that there are autistic persons who do not share your intellectual and communication skills? That there are autistic persons living in residential and institutional care settings because they can not provide or care for themselves?

jypsy said...

Mr. Doherty,

Will you *ever* give us your criteria for "low functioning" autism?

Although you asked Michelle and not me, I'll tell you that Alex does not have my communication skills and because of that it's very hard to tell whether or not he shares my intellectual skills. I know I don't share Michelle's level of either. Your second question however does not make sense. People are not put in residential care or institutions because of their self care skills. Your son is not in such a place and neither is mine. Obviously people who are in such places are there for much more complex reasons that have more to do with the people who put them there and their options than the people themselves. IMHO.

daedalus2u said...

Jypsy, It is not my notion that they had ASDs. I didn't use a citation, because I have done so before on Ms Dawson's blog, and no doubt she is aware of it. Read Singular Scientists. It is available for free download.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12519805&query_hl=1&itool=pubmed_DocSum

The author lists several people that he is quite sure were on the spectrum. He discusses 3 in detail Newton, Henry Cavendish and Albert Einstein. Others that he thinks might have been on the spectrum too are: Marie Curie, Irène Joliot-Curie, Paul Dirac.

The quote from Asperger is from that paper. Did Asperger get it wrong? Was he mistaken about the condition he identified and which bears his name? He said "It seems that for success in science or art a dash of autism is essential."

You might consider the quote from Mark Twain (though many have said very similar things):

"It isn't what you don't know that will hurt you. It's what you know for sure that just ain't so."
-- Mark Twain

There are a lot of misunderstandings and false beliefs about ASDs. Discarding false beliefs is necessary before the truth can be understood. Discarding false beliefs is something that is very difficult for NTs. That is a statement I am making, having observed that many NTs cling to false beliefs long after they have been proven to be false.

jypsy said...

No, it is not just your notion. I took issue with how you stated it as fact, a stronger statement than either James or SBC made in that paper.

Anonymous said...

FYI - Autism Speaks did not "create" the IAN Project - the Kennedy Krieger Institute did. They are merely sponsoring it,

Michelle Dawson said...

I agree that Autism Speaks sponsors IAN.

But there is overlap between Autism Speaks and the Kennedy Krieger. As in, "Dr. Gary Goldstein is the chair of the Autism Speaks scientific affairs committee, and president and chief executive officer of the Kennedy Krieger Institute".

And Autism Speaks' goals (curing autism) and values (the "autism community" does not include autistic people) are prominent in IAN, and without Autism Speaks, IAN would not have been created.

daedalus2u said...

Jypsy, I was quoting Asperger. He said "It seems that for success in science or art a dash of autism is essential."

If Asperger is saying that success in science requires being on the spectrum, how can you call it "speculation" for me to say essentially the same thing, that "virtually all of the great scientists were on the spectrum"?

Even if I am "wrong" about that, what does that have to do with nitric oxide physiology? If it has no bearing on NO physiology, it has nothing to do with whether my hypothesis of the connections between NO and ASDs is correct or not.

I want to clarify, it is hard for ASD individuals to discard false beliefs too, but (I think), not as hard as it is for NTs.

I think the reason lies in mirror neurons. NTs have "robust" mirror neuron systems, ASDs don't. Precisely everything that mirror neurons do is unknown, but it is known that they facilitate communication of some types.

I know that I don't "believe" anything because someone told me. I "believe" things (tentitively) because I have a train of facts and logic that supports the "belief" as a conclusion. I know that many NTs belive things without a coherent train of facts and logic to back it up. If you look at all the woo and ID stuff that people spout off as what they believe. There can't be a train of facts and logic to back them up, because in fact, those beliefs are wrong.

Doing science is hard because as Feynman said:

"The first principle is that you must not fool yourself - and you are the easiest person to fool."
Richard P. Feynman

I think the mirror neurons are a big impediment to doing science because they cause people to want to "get along", to adopt shared beliefs, even if those beliefs are wrong. A robust mirror neuron system makes it more difficult to buck the mainstream, even when it is wrong.

Galileo ran into trouble not because he was wrong about the Earth going around the Sun, but because the NTs who ran the Church couldn't discard their false belief that the Sun went around the Earth.

Fooling yourself is very easy, both in believing that your own ideas are correct, and that other people's ideas are wrong. I have no doubt that the religious leaders who persecuted Galileo actually "believed" the Sun went around the Earth. Unfortunately because of the cultural structures of the time, everyone who did not "believe" as they did was guilty of "Heresy", and subject to torture and execution.

What we have now, and what the whole neurodiversity movement is about is people being "guilty" of ASDs and being subject to any and all treatments to "cure" them of it (or kill them in the process).

Autism Diva has posted a good blog about the use of "torture" on ASD individuals to "train" them to act as NTs. A method that has been used since antiquity. A method that doesn't work. Einstein had a name for it, insanity:

"Insanity: doing the same thing over and over again and expecting different results."
Albert Einstein

jypsy said...

"Seems" is a word I like very much. It was used by Asperger where you quote him and also by James in his paper. My issue was the certainty you used in the line I quoted in my original comment. I don't think it's fair, accurate or realistic to diagnose dead people but by all means feel free to disagree with me. I don't wish to argue the point. It doesn't alter the fact that I will be weary the claims of people who make claims of certainty about the diagnosis of dead people who were not diagnosed while living. Had you used the words "seem", "seems" or "seemed", I wouldn't have an issue. Either way, your NO stuff is way over my head. FWIW, I lived without running water & electricity for a number of years until just before I had children (2 years before Alex was born). Even when we got water & power, we had running cold water only. My hair was washed in rainwater as was the rest of me most of the time....

Michelle Dawson said...

Re posts from Daedalus2u, I generally agree with jypsy. It's fair and interesting to speculate about historical autistics, given what we know about currently diagnosed autistics and their achievements. And post-mortem diagnoses are used in published studies of autistic brain tissue, so the practice in itself is not unacceptable. But there has to be a lot of caution whenever the person is not available to be diagnosed.

I also agree with jypsy's response to Mr Doherty, particularly re institutionalization.

I don't dispute that many autistics are denied the assistance and opportunities (and acceptance, accommodation, and respect) which would allow them to pursue areas (skills, abilities) in which they can succeed as autistic people.

I suggest that autistics are denied this assistance and these opportunities at least partly because autism advocates insist that the only way autistics can stay out of institutions (however temporarily) is by sufficiently resembling non-autistics (e.g., by acquiring the "right" non-autistic skills in the "right" order and in the "right" way).

I don't dispute that, as a consequence of the extraordinary success of autism advocacy, autistics are denied recognized standards of science and ethics (including professional ethics), and this has a major effect on our possible outcomes.

These are the essential standards that automatically protect and benefit Mr Doherty, and without which not only would his outcome likely to be poor (and if, freakishly, it was not, we could dispute that he is a real "Doherty", because our discarding of standards has ensured that "Doherties" as a group have poor outcomes), he could not proceed safely in society.

As I have written before, I did not see Mr Doherty around when it was decided that I was too "severe" and "low-functioning" to remain in my apartment, and instead had to be institutionalized (the words "locked up" were used) indefinitely. I'm surprised he was not there, to supervise this victory for autism advocacy.

I've noticed that behaviours I have (e.g., obvious signs of "severe" self-injury, which were a major issue at the Tribunal as well as in my previous human rights case), and skills I lack (e.g., basic self-care skills) are routinely invoked by autism advocates to alarm the public about autistic people and to demand that we be institutionalized.

Michelle Dawson said...

For more about the current rash of autistics-as-burdens rhetoric, see Kev Leitch here and Joel Smith here.

daedalus2u said...

I subscribe to the Stephen Jay Gould definition of "fact":

"In science, fact can only mean confirmed to such a degree that it would be perverse to withhold provisional assent. I suppose that apples might start to rise tomorrow, but the possibility does not merit equal time in physics classrooms."
--Stephen Jay Gould

When I state something as "fact", what I mean is that I have a sufficient train of facts and logic that it would be perverse to withhold provisional assent. Every "fact" I know, is subject to revision in the face of new data or logic.

If my language was misinterpreted, I apologize.

My interpretation of Asperger's statement was that unless you have a "dash" of autism, you are unlikely to be successful in science. Not impossible, but unlikely. The more successful in science, the more likely it is that someone is on the spectrum. I don't consider that a remarkable or speculative statement.

A "dash" is an imprecise term. The "spectrum" is an imprecise term also, the "diagnosis" of autism is completely arbitrary.

I accept that a lot of my NO stuff is over your head. It is over the head of virtually everyone. That doesn't make it wrong, or right. I didn't think of it as "fact", until I had confirmed it sufficiently that to withold provisional assent would be perverse. That is the place it holds in my conceptualization of reality right now. I understand that no one else should think of it as fact until they have done the same.

I don't think that anyone can really understand it with out perhaps a thousand hours of background in NO physiology. That is not something that I can convey in a blog.

Mathematicians recently mapped E8. It takes up 60 GB.

http://aimath.org/E8/

Some things take a lot of data to convey and understand. As Einstein said:

"Everything should be as simple as possible, but no simpler."
-- Albert Einstein

My motivation in posting here is to accelerate that process in everyone else. I appoligize that if, in my ASD way, I am not sufficiently clear and precise. My hope is that people will ask questions which I will try and answer.

I accept and appreciate that post mortum disgnosies are potentially suspect. But that doesn't mean that such conditions didn't exist before they could be diagnosed. People have died from a condition where they excreted sugar in their urine. For millenia. Did they have diabetes? Probably. Centuries ago, a lot of people are said to have died of an acute stomach ache. We now know that was probably a heart attack.

Even a "diagnosis" of a living person today is not completely precise. Particularly for something which has somewhat subjective criteria. The "purpose" of a differential "diagnosis" is always differential therapy. If there is no differential therapy, what is the purpose of a differential diagnosis? To justify why NTs feel that ASDs are "wierd"? The "feelings" of NTs reflect on NTs, not on ASDs.

I am somewhat new to this neurodiversity stuff. My own thoughts on how to deal with it are still in flux. I know that demonizing NTs, or ASDs is not the way to proceed. Neither is accepting the demonization of NTs or ASDs. There are some that should be demonized, when they treat human beings as non-human objects.

Unfortunately, when many NTs are demonized (rightly or wrongly), their response is often to respond with violence, either language, or physical violence. When many ASDs are demonized (rightly or wrongly), their response is often to withdraw to avoid conflict. These responses are unfortunate.

jypsy said...

Michelle, you forgot to agree with me that your intellectual & communication skills are better than mine :)

Michelle Dawson said...

Hi jypsy--well no, I didn't agree in that particular case. I recall thinking, "you've got to be kidding", or something like that...

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jypsy said...

Prometheus has an excellent point over on Kev's blog about the cost of autistics.

David N. Andrews MEd (Distinction) said...

I suggest that autistics are denied this assistance and these opportunities at least partly because autism advocates insist that the only way autistics can stay out of institutions (however temporarily) is by sufficiently resembling non-autistics (e.g., by acquiring the 'right' non-autistic skills in the 'right' order and in the 'right' way)."

I agree. I think you have that absolutely accurately.

Susan Senator said...

There are some people out there (Dr. Peter Gerhardt of OAR for one) who are trying to train employers rather than only training autistic adults. They understand that the world, too, will have to change ultimately in order to have true inclusion of all. The only way to avoid institutionalising is to give autistic adults helpful skills for navigating the NT world and giving the NT world helpful skills for navigating the ASD world. It is every bit like the deaf community. Sign language should be taught right alongside Spanish, etc.

Anonymous said...

I was struck by what Michelle Dawson said about acquiring the "right" non-autistic skills in the "right" order and in the "right" way. My son was in a mixed methodology developmental behavioral program for a couple of years. Many of the strategies used seem helpful such as functional behavioral analysis, pivotal response, visual organization of the environment, PECS, visual schedules, and task analysis. There was heavy emphasis on teaching skills "developmentally." To me, they seemed to be using wrong developmental progression. They used a developmental progression for children with a word based rather than a visual cognitive organzation. This caused us to do things that I now regret. As parents who didn't have a diagnosis, we clearly observed that our child learned in a progression from written language to expressive language to receptive language. However, the therapists told us that reading wasn't an important skill for a 2 year old so we shouldn't work with that. We were told we needed to focus on building language "developmentally" which for the program directors meant receptive language-->expressive language-->written language. Our son doesn't read anymore.