Dr. Oberman,

As an autistic myself, I have to say from the start that I do oppose any kind of alteration of autism. Might as well be straight about that from the start. It's not that difficult.

However, I find the argument, in the basis of "autistic people aren't as happy or successful as other people", an extremely unhelpful and discriminatory one. Let's do a quick substitution of the condition at stake to illuminate this.

Does having black skin likely make one less likely to be in the job they relatively deserve? Yes, discriminatory practices in today's society make this a true statement, as ugly as it is. Does that, in any way, give credence to advocating whitewashing every person? I'd hope not!

Let's take another. Does being homosexual make it more difficult to have a romantic relationship? Unfortunately (though more historically than present, as acceptance has increased), that happens to be true, given the social factors surrounding homosexuality. Does that give rise to altering sexual preference? Not exactly.

There are a number of distinct problems with this line of thinking. First is that it is double-speaking. If a condition has positives and negatives, it is unhealthy to make the negatives an overlying structure to be removed while the positives something to be praised in application, even though they essential stem from the same personal aspect.

And this much should be clear; there isn't really any objective way to state a "healthy functioning brain" outside societally desired conditions. So it will be easy enough to remove autism as a considered dysfunction in entirety, even if that same brain function with a different effect would be considered a normal difference.

Now, this much is often confused; are neurodiversity advocates advocating against giving autistics skills so that they might have better jobs and relationships, and instead promoting a better understanding of autistics. Not really; they're advocating for both. Autistic does not predicate necessarily against having social skills.

As a related endnote, I would argue highly against an essentialist nature of autism; where "high-functioning" individuals are by definition different than the "lower-functioning" individuals. First, it predicates on a set of skills, a superficial category. Autistics can shift from one category into another, just based on skills. In fact, the spectrum, while useful in talking about skills, is quite problematic in defining anything more than that. Secondly, it limits people to being in one place along a line, where any number of skills could be in any number of places.

In conclusion, while I appreciate the well-meaning nature of your actions, I find the criterion on which you say they are warranted fairly subjective and prejudicial. And I do feel sorry about the distressing nature about the opposition. But, as it stands, such research is ultimately a form of tailoring individuals to fit a societal normative, and should be opposed as such.

Cliff Schumacher

crimsonthought.blogspot.com

The Autism Institute at the University of San Diego recently presented a conference entitled "Work With Me, Not On Me." Conference participants -- including parents, professionals, and representatives of the autistic self-advocate community -- discussed how to provide appropriate education and positive supports to the autistic population, with respect for autistics as a guiding principle. This conference, and others like it, are providing a valuable dialogue on the ethical issues associated with autism.

Dr. Oberman, to the extent that your "life's goal" consists of bringing about greater scientific understanding of the autistic brain and its workings, autistic self-advocates (such as myself) are not necessarily opposed to it. Indeed, many neurodiversity proponents would like to see more studies done in areas that can benefit the autistic population, such as cognitive research, educational research, development of low-cost augmentative communication devices, et cetera. Self-advocate groups such as the Autistic Self Advocacy Network strongly support autism research that has the potential to enhance communication and other skills.

Autism research can get into murky ethical waters, however, when -- as a result of failure to critically examine the biased assumptions that pervade our society -- the primary goal is to force conformity on a minority population. I believe that researchers have an ethical obligation to consult with autistic individuals to determine their preferences, while respecting the validity of the autistic culture.

There are many biased assumptions that often go unnoticed, as Cliff Schumacher pointed out in his comment. When a capable, well-educated autistic person cannot get a job because today's hiring managers prefer applicants who do not appear autistic in the interview, this is just as discriminatory as a refusal to hire applicants who belong to any other minority group. It should be dealt with by improving the scope and enforcement of anti-discrimination laws, not by altering the brains of autistic people to make their speech patterns and body language become more acceptable to the intolerant.

abfh

autisticbfh.blogspot.com

I think it would be relevant to point out to your readers that there is a growing consensus in the scientific community against dividing autism and Asperger's. Tony Attwood, no slouch as far as ASD issues go, has stated that the scientific literature does not justify separate diagnostic categories (www.tonyattwood.com.au/articles/pdfs/attwood1.pdf). My understanding is that the DSM-V may do away with the distinction.

As a high functioning autistic with a speech delay who went to special education schools for 8 years, has had trouble holding down a job, I must add my $.02 to the neurodiversity movement. First off, there is no evidence that einstein or gates had any autistic traits. I feel I have debunked that theory in my essay, www.jonathans-stories.com/non-fiction/undiagnosing.html This is just another ploy of the neurodiversity movement.

They are not at all representative of most on the autistic spectrum. The vast majority of them are females in spite ofa 4:1 ratio of males to females consistently reported in the literature. Many of them were not diagnosed well into adulthood, and only when they had children on the spectrum. Many of them hold down jobs and function well in society.

I am 52 and never had a girlfriend and am unemployed. They claim they are advocating for human rights, but it seems to me all they do is start internet wars and insult people who don't agree with them, funding organizations for curing autism, parents who are trying to help those kids and the rare pro-cure autistic person who publically writes on the internet trying to show them for what they are.

I agree with you that there is a neural basis for AS. I believe the disorder requires much more than just increasing society's tolerance for neurodiversity.

In fact, the controversy just goes on, with many strident opinions and different points of view. I believe that fact itself shows that whether we are parents, patients, educators, or researchers, we are very far from knowing what the exact nature of the disorder is, and the best way to handle it, for any specific individual.

So, sure, your research is vital for that purpose, and your willingness to examine the ethical issues should be complimented. My point is that the individual parent, called to a meeting with school principal, etc., is told "All experts agree.." and "we must diagnose your child in order to help them..". These statements are opinions, not facts, in my opinion. That is the key to the controversy.

My opinion is that a less conclusive attitude, and more regard for the differences in individual kids, and a recognition that we don't have all the answers, might be the quickest route to the deeper understanding needed to bring people together. That is the message I get from Mr. Solomon's article.

Interesting post...having aspergers, there are days, lol. i think it comes down to this.
What I want, is to be me.
I don't think i want to be cured, maybe not even treated.
There are days, when i do wish i understood social cues better, but then again, there are days that, I'm glad i don't.
Ultimately, I don't know if you could ever cure AS for the better.
The only reason I say this, is because even some of my "quirks", the ones that make me "weird", are beneficial to me, whether you understand them or not.
For example, i do all my "best thinking", when I pace. usually, i also tend to use hand gestures, and mumble, or even talk out loud while i do this.
I have no doubt that this makes me look weird to some, totally nuts to others, but if i cant pace, verbalize, and use those hand gestures, i cannot seem to get into the deep thought processes I need to solve many of the deeper problems that i sometimes face.
So, while you might be able to treat/cure that someday, in doing so, you would break me too.
I already know what its like to "feel" broken. Please don't make me "be" broken.

One of the big dilemmas facing autistic people on the other hand, is a bit different:

If we are unable to speak, or unable to get people to listen to us, we are automatically put in one category, by others. This category is not necessarily considered 'low functioning', although it can be. But the ultimate uniting factor among this category is, that it is then often presumed that those of us put into that category are best served by the agendas of relatively mainstream professional or parent groups.

If we are able to speak, or otherwise able to get people to listen to us, we are put into a different category. We are presumed to be competent in all areas. We are presumed to be aligned in various other ways with the categories "high functioning" or "Asperger's", even if this is not the diagnostic status we actually have. We are deliberately kept separate from those in the other category, even if the difference between us and those in the other category is nothing at all innate, and even if we have been in both categories at different points in our lives. We are told that it might be okay to extend acceptance to us, but not to others, even if the line between 'us' and 'others' is in reality non-existent or blurry. We might also be declared non-autistic or 'diagnosed' (usually via Internet, which is not an accurate method of diagnosis) with some other condition, usually one that people are very prejudiced against such as various psychiatric disorders.

Cal Montgomery wrote an excellent critique of this categorization scheme (as applied to disabled people in general, not just autistic people) in an article called Critic of the Dawn.

Anyway, we are usually lost under these categories, and most people considering ethical questions never actually question the reality of these things. Mostly they see what their minds tell them to see, which might not be the same as what is actually there, given the very entrenched stereotypes that guide most people's perception of disabled people in general.

I have been in situations where nobody would believe I could have written what I am writing right now. Once it was declared in front of me by a medical professional (not a diagnostician, but still someone with power at the time) that I clearly had the mind of an infant, if that. This led to all kinds of discriminatory treatment, while I looked on, unable to prove otherwise, until my regular doctor came in and contradicted the guy. I am confident that if you showed this comment to the people who have seen me that way, they would not believe I wrote it. Especially given that in some such circumstances, even if I wrote something in front of them (with nobody touching me or anything, and typing faster than most of them could), they looked around to see where the trick was instead of believing I was writing.

I have also been in situations where I could provide a little more superficial veneer of normality, and other people provided a whole lot of context in which every single autistic trait was passed of as something else entirely, which caused them to be unable to see all the autistic traits as actually related to each other (an online friend of mine calls this the difference slot, where if people already see you as one kind of different, all other aspects of you that are odd are presumed to be because of that difference. At any rate, a combination of me being a little better at some things at some times in my life, and the difference slot effect, has also at times created perceptions that there would be no way I was autistic. (Although a significant number of people who knew me at those times in my life reacted to my autism diagnosis with "So that's what was going on" so this perception was far from universal.)

As an autistic person, many times I am not allowed to have those two experiences in the same lifetime, or even at the same time (or on the same day at different times, etc.), and I am punished for having both experiences.

I find that when I am, as Cal put it (read her article for the reference) mistaken for "Bruce," then my opinions are discounted as non-existent and people assume that I would want whatever mainstream autism organizations want for me. If I do get opinions across at all, people assume that someone else is putting words in my mouth.

When I am mistaken for "Mary," then my opinions are discounted as irrelevant to the "real" or "severe" autistic people who are right then being put into the "Bruce" category. People assume that I am "very high-functioning" in all areas (usually they have a list of traits that I supposedly don't have), or that I am not autistic at all but just want to make trouble.

The categories are seen as real, and as mutually exclusive. Those of us who straddle both are either shoved into one or the other against our will, or else considered incredibly suspect. It is not recognized that these are, as Cal points out, caricatures, they are not the real people.

Real people of course have varied opinions no matter what category we are in, and when people (even us ourselves) assume that our opinions stem from our being categorized one way or another, they are denying us the fact that we have minds that can consider information and come to different conclusions based on something other than our "functioning level". Some of us view disability in one manner, some in another, and some in still another.

By the way, I am not anti-science either. I am in fact becoming involved with scientists myself. Some of it is an attempt to get autistic-friendly communication aids to autistic people who need them. A number of autistic people who do not want autism itself eradicated, are involved, ourselves, in parts of the research community, and believe that some of what we do will be of assistance to other autistic people. There are of course a huge number of ways to assist autistic people without the goal being for us to be less autistic or non-autistic. Autistic people, after all, grow and change, just on a different trajectory than most people. Remaining autistic in no way means stagnation, lack of learning, or lack of growth.

I am sorry for the length of the comment, and it seems you are not necessarily trying to put us into those categories. But I thought you should be aware that this is the dilemma autistic people face when we want to speak out, especially if we speak out against beliefs that many people with power cherish and hold dear. (That seems to be the time at which the personal attacks come out, as well as the people trying hard to divide us and assume what our lives are like and why.)

You simply have no idea do you?

At one time an academic researcher, a philosopher, a scientist was someone who not only knew their own field but was au fait with literature and the arts, politics and society generally, someone who with a measure of support could undertake the rigours of any academic field.

You and your colleagues have fallen far from that ideal in my opinion to the point at which one wonders just how much external and ecological validity your studies do have when considered from a wider perspective outside of your own narrow ken?

I think I know autism (yes the whole spectrum) a great deal better than you do because I engage it from a civil rights perspective. You are so full of stereotypes. Yes I do as a researcher myself know all about the rigmarole one has to go through for approval, but I am not studying for idle curiosity or vainglory, I am studying to improve the lot of my people, who you continue to do down with your patronising attitudes. Helping us indeed!!!!! helping yourself in our name more like.

You just would not know. Try studying sociology or philosophy to broaden your outlook a little.

As the mother of a son with Asperger's and the daughter of a man I believe to also have Asperger's, I don't like to call it a disorder. This may be my personal hang up but I honestly don't see anything *wrong* with them. I don't see it as a disorder, that term makes it sound like it is something to be fixed or cured and I don't believe it needs to be or should be. I believe Asperger's "Syndrome" is just a different way of being. Or a different *wiring* as others have mentioned and I do think it is genetic. I wouldn't change my son for anything though, if someone offered me a *cure* right now, I wouldn't want it and I don't think he wants it. This is who he is.
Just because the *normal* people label him as different doesn't mean he is broken and needs a cure or to be fixed.

Thank you for your perspective. Many people feel the way you do and I agree for many individuals with Asperger's Syndrome their "deficits" do not pose a major problem in their lives. They are able to live fulfilling, productive, lives. However, for many the deficits are real road blocks in their abilities to make friends, hold down jobs, meet mates, etc. And many lower functioning individuals have difficulties even in the most basic communicative skills. This is part of the problem in lumping the various levels of functioning together under one name. Clearly there is a spectrum here and it is not our goal as scientists to "fix" everyone to be whatever is deemed as "normal". Rather, it is to have a better understanding of the disorder (or syndrome if you prefer) so that those that need or want treatment can receive treatment that actually targets the cause of the behavioral difficulties rather than the symptoms.

Two weeks ago I realized that my father probably has Aspergers. I started reading online, and read that it presents differently in girls - the description given was a very close match for me in certain aspects. I feel a mix of devastation, shock, grief. All my life I have been hurt by my father's apparent rejection of me and coldness towards me and other members of our family, but it all looks so different now. Everything about him is such a close match to the descriptions of Aspergers that I have been reading. It makes me wonder, if you took the syndrome away, what would be left? Who is he underneath all that? Who am I?

If this TMS thing can switch on the parts of my brain that are not working, then I want it. I want to be able to read social behaviour automatically. I want to be aware of the emotional content of a sentence. In the past I have offended or upset people by saying something which to me was a statement of fact, but in which they perceived negative emotional content of which I was unaware.
I want to be able to carry on a social conversation that isn't about anything and goes nowhere in particular. Etc etc etc.

thank you for posting, hcantrall. i, too, am on the spectrum at various levels, and wish not to be "cured" of the way in which i view the world around me.