Sunday, March 11, 2007

Verbatim: Matthew Belmonte's hidden abilities

Matthew Belmonte spent four years working with Simon Baron-Cohen in Cambridge, and is now at Cornell. This passage, reflecting on priorities and presumptions rampant in autism research, is from a 2004 review.

It is quite remarkable and difficult to fathom that we currently have more functional imaging data about how the autistic brain processes a face or a theory of mind than we do about the way it processes, say, location, colour, orientation, or spatial frequency; at what level of processing do the perceptual and cognitive abnormalities begin? It is also important to recognise that absence of behavioural performance or functional activation does not necessarily imply incapacity of the corresponding brain subsystems. Rather, an apparent lack may be due to failure to engage an intact capacity. The proper stimuli or experimental paradigm can bring out such hidden abilities.


Reference:

Belmonte, M.K., Cook Jr, E.H., Anderson, G.M., Rubenstein, J.L.R., Greenough, W.T., Beckel-Mitchener, A., Courchesne, E., Boulanger, L.M., Powell, S.B., Levitt, P.R., Perry, E.K., Jiang, Y., Delorey, T.M., & Tierney, E. (2004). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Molecular Psychiatry, 9, 646-643.

16 comments:

Phil Schwarz said...

Belmonte was a fellow contributor to the 2005 conference on Autism and Representation at Case Western Reserve University in Cleveland. At the conference, he said two remarkable things, one of which seemed very enlightened and constructive, and the other of which was really scary and repulsive.

The enlightened comment was that from what he could tell, the preponderance of atypical autistic behavior was simply the individual's best attempt at a rational response to his or her surroundings, given the inputs and tools available to him or her. And that that goes for behavior deemed maladaptive as well.

The scary comment was that he would, in a heartbeat, apply a treatment to alleviate what he considered his autistic brother's suffering due to handicaps, even if that treatment were to completely overwrite his brother's personality and identity.

Autism Reality NB said...

"The scary comment was that he would, in a heartbeat, apply a treatment to alleviate what he considered his autistic brother's suffering due to handicaps, even if that treatment were to completely overwrite his brother's personality and identity.'

Mr. Schwartz do you feel that you are better placed to assess what would be best for Mr. Belmonte's brother than Mr. Belmonte? Do you have more knowledge of that person's challenges and difficulties than his own brother?

Michelle Dawson said...

Hi Mr Doherty,

Do you feel that those intellectually disabled (that is, "low-functioning") people in People First Canada should not have had any say in the Eve case?

After all, who could possibly know Eve's challenges and difficulties better than Eve's mother? How could anyone dare deny Eve the "medically necessary" treatment Eve's mother insisted was what Eve really needed and was best for Eve?

Matthew said...

Mr Schwarz:

A friend of mine pointed me to your comment posted on this web site. I have devoted a great deal of time and effort to biomedical research which I hope may alleviate the suffering of people like my brother, and I am quite weary of being attacked (especially behind my back, on some unannounced web site) for calling his severe form of autism what it is, namely, a disease. I have written in some detail on my web site about my work and where I hope it may lead, so I will not repeat all that information here.

I will not drag my family into this public discussion, except to say to you that although my brother cannot speak I do know him well enough to understand how much his lack of speech - and in general lack of any easy and flexible means of communication - frustrates him. You do not know my brother at all, yet apparently feel entitled to use him as a pawn in your misguided agenda to redefine autism in general - including its severest forms lacking speech and other communicative means - as merely a "difference" and not a disease.

I do not at all mean to insult or to belittle those people with autism or autism spectrum conditions who can communicate, some of whom gain at least as much in terms of enhanced perception as they may lose in terms of social disconnectedness with the neurotypical world. But that sort of autism is not at all what we're talking about in my brother's case.

Thank you, Autism Reality NB, for saying what Mr Schwarz and his sympathisers very much ought to allow themselves to hear.

Regards

Matthew Belmonte
Assistant Professor, Department of Human Development, Cornell University

AnneC said...

"The scary comment was that he would, in a heartbeat, apply a treatment to alleviate what he considered his autistic brother's suffering due to handicaps, even if that treatment were to completely overwrite his brother's personality and identity.'

The emphasized portion of the statement above is the primary issue here. If you completely overwrite someone's personality and identity, do you really have the same person as you did before? If not, how can whatever "treatment" induced this change be said to be benefitting the original person?

It sounds to me that if you overwrote someone's personality and identity completely, it wouldn't be much different from, say, having the original person whisked out of existence somehow, only to be replaced with a different individual who would then be assigned the role of the original person. And I can't see how any rational person wouldn't have a problem with that idea.

I know that people change a lot between childhood and adulthood, and that our cells continually renew themselves, causing some to argue that none of us is "the same person" as we were as children, or as we were five years ago. However, in that case, at least we have a continual thread of autobiographical memory, in addition to a set of particular predilections and (frequently) interests that follow us throughout our lives.

Some people do, over the course of time, decide that there are things about their own personality they don't like, and that they want to change -- and they might in response to this take up meditation or classes or some other means of enacting this change in a self-directed manner. But again, that's not the same thing as having someone else decide that your personality needs to be rebooted completely.

And if anyone can't see the ethical problem with wanting to basically "delete" a person and reboot their physical hardware with an entirely new consciousness/identity-thread, then I really have to question what they think does comprise a person.

It's one thing to say that you want to help someone deal with their difficulties -- but it's quite another to say that you'd be happy to replace them with someone else if that someone else had a better chance of living what you perceived to be a better life.

Alyric said...

Dr Belmonte

Strange to find two souls on one comment board with exactly the same cognitive deficit. Let's be clear about this . I fully expect Harold to take your comment and tie it to a lack of knowledge of the specific challenges of your brother. What nonsense.

What you advocated essentially is a very slippery slope indeed. Since you've elected for the moral high ground, perhaps you could enlighten us all as to where the cutoff to giving someone the freedom to overwrite a person's personality and identity is exactly. You said yourself that the key is communication so why on God's earth would you need to tamper with someone's personhood.

OK, you made a dumb remark and perhaps didn't mean it quite as literally as it was taken - more in some excess of protectiveness or sympathy or whatever it is that folks do to show that they 'care'. Do have the grace to apologise.

Michelle Dawson said...

Hi Dr Belmonte,

I argue with Phil a lot too, though not necessarily in the way you are doing.

In this case, Phil is entitled to state that certain views are scary to him. This does not mean he is using anyone as a pawn.

I've never understood the "merely a difference" put down, as you use it here. It involves an assumption that that anything but minor ("mere") human differences must be diseases, and therefore very bad things we should get rid of.

It's also a non-scientific claim that autism is merely a disease. This diminishing of autism into a disease process, which it is not, is among the reasons we still do not have a clue as to how to consistently help autistics achieve good outcomes.

My experience knowing and working with autistics who have more trouble with speech than I do (including autistics who currently have little or no speech) is different from yours.

Dave Whitlock said...

First of all, the comment was completely hypothetical. There is no "magical" treatment that would do either of those things, let alone both of them simultaneously. It is doubtful that any treatment could completely "overwrite" anyone's personality. Too much of it is hard wired in neural structures that cannot be changed in adults.

But suppose the "treatment" was the equivalent of "rebooting" the individual back to the moment of conception (to use another computer metaphor) so he could develop "normally". Would that be so bad? If I had a bad developmental outcome, and could be "rebooted" back and then live a "normal" life, I would choose to do it.

The treatment was to eliminate the individual's suffering. I think, that much of the motivation of those who use military metaphors in relation to autism (defeat, missile, war), stems from the "suffering" of parents and non-ASD individuals, not the ASD indididual involved.

There is a gigantic difference.

Michelle Dawson said...

Hi Mr Whitlock,

I'm old enough to remember being considered to be inferior and suffering because I was female. It was just assumed that if I had any choice in the matter, I would prefer to be male. Who wouldn't?

Similarly, as I've written elsewhere, "My Member of Parliament recently told me that people casually and automatically assume she would prefer to be white, and incorrectly believe this would be an improvement".

Likewise, it was but recently assumed that homosexuals were miserable, dysfunctional, suffering, isolated, etc., as well as diseased. Who wouldn't want such a life of abject misery averted at the earliest possible moment?

Fortunately, we have in many ways mostly gotten over assuming that being male, white, and straight is the optimal outcome that everyone would wish to have.

Unfortunately, there is the persistent notion that disabled lives are inferior, impoverished and consist largely of suffering, and that disabled people are drains on society. Here is Catherine Frazee, former chief commissioner of the Ontario Human Rights Commission (she has spinal muscular atrophy):

"The nondisabled population...is most guilty of a colossal failure of the imagination.... The inability to imagine what the disability experience is all about is translated into a kind of collective mythology that a person with disability lives a tragic life, marked by deprivation and suffering. This is simply not so and we have a responsibility to communicate that more and more daringly. We have to find more and more creative ways to express the positive powerful features of the disability experience and then to communicate these in every way possible."

This "colossal failure of imagination" on the part of non-disabled people encompasses the assumption that disabled (including autistic) lives are not worth living, and that anything is better than being like us, and that so long as we are disabled, we must only and always strive to attain or at least imitate that non-disabled optimal life.

Also, see the Eve case I referred to above, where the views of disabled people were entirely opposed to the views of non-disabled parents of disabled offspring.

Dave Whitlock said...

Hi Ms Dawson (you can call me Dave). I think I am in agreement with you. I have Asperger's, and at times it has caused me tremendous suffering, not because of the Asperger's, but because of what others have done to me because of it (being abused by my older siblings, and the PTSD that resulted). Many of the "problems" of autism, are not due to the autism per se, but rather are due to the reactions of other people to the individual with autism. Much like the "problem" of being female, black, short, fat, unattractive, or poor.

The quote you mentioned is exactly and precisely right "The nondisabled population...is most guilty of a colossal failure of the imagination". I think that is exactly and precisely the main "feature" of ASDs. I say "feature", because I think that ASDs are a normal evolved aspect of human physiology in response to maternal stress, and invokes the tool-using "nerd" phenotype.

I have sent you what I am "working on", which was rejected by a major journal as not being "interesting". If you are interested, I have much more on the mechanisms I think are involved.

NTs (in my opinion), with their robust mirror neuron systems, are simply too caught up in what other people think (and especially think of them) to be able to think for themselves, except with great difficulty. All the great scientists have been on the spectrum. I think because NTs find it very difficult to reject "conventional wisdom" even when it is wrong.

Michelle Dawson said...

Hi Dave,

Without any reference to the mechanism you are interested in, I disagree with the generalizations you make.

I know numerous non-autistics who think robustly (so to speak) for themselves, and are so utterly unconcerned with what others think of them that some of them (who might even be scientists) even work with me--and, for heaven's sake, are seen in public with me, without even wincing.

Dave said...

I don't dispute that. I suggest that depending where you draw the line between "autist" and "non-autist", many people could fall on either side. That "line" is completely arbitrary. (and it isn't a "line" anyway, but a very very complex manifold).

I am still in the process of formulating my understanding of this. I am not sure how much ASD is "necessary", or "sufficient".

When I was thinking of NTs, I wasn't thinking of scientists, I was thinking of people who follows all of the fads, watch American Idol, or who "know" that all knowledge (worth knowing) is contained in a book written some thousands of years ago. Or who can convince themselves and others that abusive and degrading treatment is not torture.

I don't doubt that such people would wince to be seen with you, or with me. I certainly would wince to try and have a meaningful conversation with them.

Michelle Dawson said...

Hi Dave W,

I disagree with the assigning of virtue to autistics as a group in any way, as well as other similar or related stereotypes. I also oppose the denigration of non-autistics as a group via stereotypes--just like I would oppose the assigning of virtue, etc., to one gender or to one race or whatever, while denigrating other genders, races, etc.

Dave said...

Hi, I don't think I was assigning "virtue", or "non-virtue", I didn't mean to. My focus now is on how ASDs evolved, and what characteristics are evolutionary survival/reproductive traits. Survival/reproductive traits are not virtues. Some of them are quite horific. Succumbing to peer pressure is a reproductive trait. Lots of children have been born because their moms succumbed to peer pressure. (I don't consider that a horific trait though, but there are others that are.)

I think ASDs relates to tool manufacture and use, having listened to Wierd Al for days while playing minesweeper (I have scored below 200 a few times, not to brag (the actual record is much much lower, <<100), simply to illustrate how much I have been playing it.), illustrating a high tolerance for repetive behaviors.)

http://www.youtube.com/watch?v=-xEzGIuY7kw

When do characteristic autistic symptoms become survival features? Not when times are easy, but when times are hard. I think that is when the ASD phenotype gets invoked, a brain can only (most easily) be "wired" that way in utero and early childhood. "Stress" is a low NO state. NO regulates thosands (tens of thousands?) of pathways.

I completely agree that virtue or denigration should be applied only on an individual basis.

Lucas McCarty said...

I still can't work this out. Mr Doherty says and Mr Belmonte affirms that ethics do not apply for a person if someone close to them says so?

As has been mentioned, it's a slippery slope or 'invisible line' being drawn.

I also don't remember anyone ever beginning a campaign to 'redefine' Autism; it's more a case of working against opposite efforts to redefine it as a disease, which yet has nothing to support it as such.

And I would love to meet a non-comotose Autistic that has *no* communication.

Lili Marlene said...

If some person can't communicate, how can anyone be sure that their apparent frustration is due to their inability to communicate?

I've found Mr Belmonte's views to be a bit of a worry in the past.