Autism Vox

57 opinions for “Try Not To Cure Too Much Of It”

• Mrs. C
  Mar 16, 2008 at 10:26 pm

  I have two boys on the spectrum and I’m still not entirely sure what autism IS. I’m not sure what causes it or what the difference between someone who is on the spectrum at the very high-functioning end, and a withdrawn “regular” child would be. I don’t think these things are adequately explained to parents because there are so many unknowns out there.

  While I disagree with you on the subject of vaccines, what you had to say in Newsweek was absolutely true. We need to focus on what is going to help the folks affected by autism. It would be nice if insurance didn’t treat autism as a mental disorder as well, but covered autism treatments just like they would my other son’s allergy shots. (That would be great! I don’t even pay a copay on those!!)

• Cliff
  Mar 16, 2008 at 10:58 pm

  See, this is where autism identity is so emotionally tough for me. I hate it when the overlying condition is equated all of the related factors. Because, pretty soon, it’s equating a person to a skill. It’s putting moral value on learned behavior, which is really sad. In such a construction, it is expedient to discard individuals who haven’t learned what people want them to.

  Makes me sick.

  Cliff

• John Gilmore
  Mar 17, 2008 at 9:32 am

  Maybe when we have a way to cure autism enough to allow my non-verbal eight year old to talk then I might take “not curing autism too much” seriously, but probably not much even then.

• Emily
  Mar 17, 2008 at 9:55 am

  John, since you don’t have a link to your name, I can’t find info that might answer my questions, so I was wondering if you could tell me some things. These are personal questions, so please feel free to ignore.

  When did you start therapies for your son? How old was he when he was diagnosed? What were some of his early signs?

  These questions are not intended as any kind of a “trap” or the basis of an argument. I’m asking for informational reasons.

  Thanks.

• John Gilmore
  Mar 17, 2008 at 10:11 am

  Emily,

  Symptoms appeared acouple days after his last vaccines at 13 months. Symptoms were the typical ones, spinning, flapping, appeared deaf, lost the few words he had, prolonged staring. Therapy started at about 15 months. Intensive EI at about 18 months.

  John

• Kristina Chew, PhD
  Mar 17, 2008 at 10:23 am

  My son might not have been able to talk, we suspect—-intensive speech therapy/ABA helped immensely; we were more than fortunate that one of Charlie’s first therapists was a speech therapist with an ABA background. She taught Charlie to sign.

  Charlie talks in limited and short sentences and phrases. Even if he could talk better, it does not seem that he would just start to have conversations like a non-autistic 10 year 10 month old boy. His thinking and whole take on the world would still be different.

  Thanks to John for writing about your son.

• Emily
  Mar 17, 2008 at 1:25 pm

  Thanks, John, for the information. I’m thinking of these things in the context of our youngest child at this point.

• kal
  Mar 17, 2008 at 8:26 pm

  Thank you for posting this.

• daedalus2u
  Mar 17, 2008 at 10:00 pm

  I think that there are two components to autism, the neuroanatomy, and the acute regulation of functional connectivity. They are more or less separate.

  I know this is just semantics, but as I see it, the neuroanatomy is what causes “autism”, the acute functional connectivity is what causes “autism-like” symptoms. (autism-like as in the sense of what Hannah Poling had)

  The neuroanatomy occurs (mostly) in utero and early childhood, and is (to some extent) immutable. The functional connectivity occurs acutely and is regulated minute to minute, second to second.

  If you are in an “autism-like” state for a long time, there is neurological remodeling that makes your neuroanatomy more like that in “autism” and vice versa.

  It is the functional connectivity that goes down during a meltdown that makes people more “autism-like” during that meltdown. If you could do the opposite of a meltdown, that would make people less “autism-like”.

  It is the decrease in functional connectivity that causes regression.

  I think the functional connectivity is mediated through NO, and inflammation, stress and oxidative stress decrease that functional connectivity.

• CatM
  Mar 18, 2008 at 11:05 am

  Two of my sons are diagnosed with Asperger’s, and my estranged husband clearly has the disorder. I demonstrate some signs of being on the spectrum. While I love my children *for* their quirks and not in spite of, I see how difficult many aspects of their lives are and how much they struggle to work toward independence. While some people with AS are high achievers, this is actually not the norm, and studies in the UK show that the majority of adults with AS continue to live with their parents and are unemployed or underemployed.

  I think it is possible that curing Asperger’s/autism will not stamp out all the creativity and uniqueness. After all, there are many brilliant, creative people who do not have autistic disorders.

  To me, a disorder is a problem someone has that impairs their ability to succeed at the things they want to accomplish and causes them unhappiness. Everyone I know with an autistic disorder has had difficulty achieving success in several areas they pursue (employment, relationship, parenting) and feels unhappy about this.

  It is not simply that autistics are a minority trying to function in a neurotypical majority-governed world. If the whole world were autistic, based on my experience, I still believe autism would present difficulties. My two children with AS cannot get along with one another at all, and their father has a tremendous amount of difficulty parenting them. Their existence is too self-centered to allow them to work toward ensuring the welfare of the group.

• Sarah
  Mar 18, 2008 at 1:36 pm

  CatM, you really should watch describing people on the spectrum as “self-centered.” It’s pretty insulting. You don’t seem to be understanding what the neurodiversity movement is saying, moreover. No one’s saying that one must be on the spectrum in order to be creative or brilliant or whatever. However, what we are saying is that autism conditions are inseparable from the person. You simply cannot “take it away” and leave all the good stuff. The world doesn’t work like that. Elizabeth Moon’s “The Speed of Dark” is an excellent sci-fi novel which delves into these issues.

  No one is saying that in an autistic-majority world, everything would be just peachy. That would be silly. What we are saying is that in a world better-suited to autistic neurology, we would tend to “function” better. That’s all. I think it’s pretty ridiculous to claim that autistics are too “self-centered” to run the world and ensure “the well-being of the group” when NT-dominated societies haven’t been able to do that for thousands of years! Is the world we live in today one in which everyone’s well-being is cared for? I really don’t think so. Likewise, there are NT children who don’t get along. There are NT parents who struggle to parent NT kids–parenting is a tough job, I’ve heard! None of your anecdotes “prove” that Asperger’s or autism is an inherent defect. Struggles are inevitable–for all human beings–but the mindset which attributes all difficulties to “autism” and all talents to something else is flat-out wrong and needs to be debunked. You might want to do further research into the social model of disability.

• Cliff
  Mar 18, 2008 at 4:01 pm

  Similarly put to Sarah, I find it rather insulting, CatM. It’s putting this insane moral value on achievement; in other words someone’s life is only valuable because they’ve achieved what society says they should achieve. Personally, I don’t think that putting moral implications on a career of all things is proper (are you morally subservient to the president? I thought not!). Similarly, happiness isn’t either. There is value in individual life and in being able to be different and try to go through the world in a different way, and the autistic one is such a thing. And while creativity is not exclusive to autism, it does seem to be fostered by it.
  And, as Sarah pointed out, the two are inseparable. You’ve created this limited construction of the person, gathering up all of the negatives you want to subscribe, without thinking about the positive implications for that existence (is your child stubborn? Does he have a high willpower?). I would not be who I am without autism and, to be frank, neither would your kids.
  And, yes, individuality exists within autism, but it’s just weird that you construct something regarding the autistic world where everyone clams up. Ok, so there’d be some more autonomy given in some areas, but the nurturant family model (as it relates to political structure) has been arguing for that for years now! And, as Sarah notes, strained relationships are not the property of autism. I mean, kids tend not to necessarily get along with each other, and there are some people who have a hard time parenting, and the behaviors of the two groups, while possible within the structure of autism, are hardly exclusive to the structure of autism.
  In fact, the logical implications are staggering in this. Have a friend who isn’t in a good position at work is unhappy about it, regardless of a diagnosis? They need to be changed right away, don’t they, because they’re unsuccessful and unhappy. Only happy and successful people deserve to stick around. And if we can’t find both happy and successful people, people all need to be mind washed until they are.
  Personally, I find that to be disgusting.

  Cliff

• Cat M
  Mar 18, 2008 at 9:06 pm

  First of all, Sarah, you misunderstand my use of “self-centered.” I do not mean it negatively as you clearly interpet. The etymological origin of “autism” is from the Greek word “auto,” which means himself/herself/itself. Autism, is indeed, a self-centered condition, in which the focus of the autistic person is on the self. That is why it is also associated with “mind-blindness,” a difficulty (or even impossibility) empathizing.

  I understand yet disagree with the aims of the neurodiversity movement. My point, which was only in response to this boy’s comment that without autism, you would lose a lot of brilliance and creative thinking, was simply that I am not convinced those aspects of many autistic people’s personality would not exist independent of the autistic condition.

  I am not willing to accept that if my children were not autistic, they would be less brilliant, only that they might be brilliant in a different way, because there are many brilliant people who are not autistic (and many autistic people who are not brilliant). There are great mathematicians who are not known to have had autism, for example, which means my son’s mathematical skill may exist independent of autism, and there is no evidence that curing autism would eliminate it. Why is that offensive?

  I believe I also said that I love my children *because* of their quirks and not in spite of, so clearly I recognize that it contributes to their personality; yet, as their mother, I would have loved them just as much had they not had autism.

  I appreciate autism contributes to one’s personality, but contrary to what Cliff said, I believe it is a disorder. No offense, Cliff, but my experience with the autistic people in my life (including me) is that they sometimes have difficulty with nuances in verbal communication (written or otherwise), and I am afraid you have either wholly missed my point or I have inadequately presented it.

  My point was not at all that autistic people should attempt to meet some neurotypical and arbitrary definition of success in social, academic, or occupational achievements. My point was that some autistic people have trouble accomplishing their personal goals, what THEY define as success. As a result, they feel unhappy. Regardless of whether you think everyone should not be happy, most people–autistic and otherwise–do not like being unhappy and would like to change it. I do not care whether my children want to be janitors or programmers, if they desire to remain single or get married, if he wants to live on his own or live with me until he’s 30 (or more). If he is content with his situation, then I will try to be content with his situation.

  You are right that many people who do not have autism do not achieve success. Many people have other neurological or psychological issues that get in the way and, when possible, avail themselves of treatment when they find themselves unable to work toward their personal goals.

  What I said, and perhaps not simply enough, was that it is clear autism interferes with some people’s ability to achieve what they consider success and be happy with what they have accomplished (like my sons and my estranged husband). If there were a way to remove those obstacles for my sons, I would be glad of it, because they struggle very hard to accomplish what is so much easier for most of the kids around them to achieve.

  I had a therapist once who documented a certain diagnosis to secure insurance payment for continued therapy. He explained that according to the diagnostic manual, the condition did not actually constitute a disorder unless I felt it brought me unhappiness. This echoes what I am trying to say in this case. There are many people, particularly with AS, who are bewildered at their inability to form lasting relationships, to achieve success in the things they pursue, and to communicate effectively with others. It is their unhappiness I would seek to alleviate. Even successful people who have come forward to acknowledge having AS (like Tim Page) describe a lifetime of feeling alienated, educational struggles, difficulty maintaining lasting relationships and parenting, that cumulatively exceeds what many people experience (yes, there are non-autistic people who have these same difficulties and they probably need to be treated for some other condition).

  My other point, also misunderstood, is that it is not enough to say autism is an issue only because most people are “neurotypical” and can’t accept them. The nature of autism (it truly does relate to self-centeredness [as in focused on self], look it up) is that the person affected by it has difficulty considering the welfare of others before the welfare of self and, in many cases, even understanding why there is anything problematic about this.

  This correlates with everything I have read about Asperger’s and everything I have experienced in interacting with people with Asperger’s. I am sorry I did not have go into great detail about what I mean about disagreements between my family members with AS, in my anecdotal statements, but autistic people, do, in fact, have difficulty communicating with others or understanding or accepting as valid points of view that differ from their own. This is one of the hallmarks of autism (and AS). So certainly an inability or difficulty in seeing things from others’ perspectives would hinder social progress and present a myraid of complications. The notion that if roles were reversed and neurotypical people were in the minority, then neurotypical behavior would be the “disorder” (something suggested to me by one AS friend) and the world would function according to autistic principles does not seem likely to me.

  I am sorry that you took offense at my statements, but perhaps you were inclined to take offense. Certainly none was intended and hopefully my explanations have helped you understand my point a little better.

  I would never denigrate people with AS; two of the most important people in my world have AS. I simply disagree with the position that AS is not a disorder and is instead “neurodiversity,” and I disagree that it would not be good if it could be cured.

  Would curing autism change how people behave? Yes. But, you know, we treat or attempt to cure many neurological-based conditions, such as non-situational depression, ADHD, bipolar disorder, etc. Treatment changes the personalities of those who have these conditions. Are you opposed to treatment for these people on that basis? You will likely argue that they are fundamentally different, but I do not agree.

  Anyway, the discussion is academic, isn’t it? There is no cure for autism, and given that it is manifested as differences in brain structure, it seems unlikely one could alter that even if one wanted to.

  I simply don’t believe that all of what constitutes my sons’ personalities results from AS and if you removed the AS, they would be wholly different people, any more than I believe that when you treat ADHD or depression, the person with those conditions becomes a wholly different person.

• Sarah
  Mar 19, 2008 at 1:25 am

  CatM, the idea of “mind-blindness” is pretty flawed scientifically IMHO. I don’t dispute that autistic people can often be bad at it, but I don’t think that non-autistic people are particularly good at it, either. Better at understanding social cues, sure, but not necessarily at taking others’ views into consideration. Your definition of autism relies heavily on the definitions designed by potentially biased NT researchers. Focusing intently on oneself (*and one’s own interests*) does not preclude the ability to care for others. For Exhibit A I give you the many autistic people who are involved in political movements, specifically the neurodiversity movement.

  Yes, people on the spectrum have difficulties. But that does not make autism a defect. You fail to mention that many of the difficulties you mention are due partially or entirely to social context. It is wrong to conceive of autism as an *inherent* defect. To provide an example, I’m in a long-term relationship with someone else on the spectrum. We are able to relate well to each other because we share interests, political views, and have had similar life experiences. Before I met him, I might have said that I had difficulty forming close relationships with others. I didn’t change, but my situation did. That’s the social model of disability. No one doubts that many people on the spectrum struggle with many things, but the neurodiversity movement seeks to change the discourse about these difficulties away from using words like “disorder.”

  Of course, the idea of what an AS majority/NT minority would look like is entirely speculative. (Though Autreat in the US and Autscape in the UK attempt to simulate those kinds of conditions.) You seem to be saying that it wouldn’t work because people on the spectrum are too rigid in their beliefs. That’s interesting, but I’d also note that there’s a lot of that in current politics as well, plus corruption, pandering, and opportunism also get thrown into the equation. Could autistics really do worse at running the world? I guess it’s possible, but they’d really have to try. (That reflects my opinion on the current state of affairs.) As an interesting side note, Thomas Jefferson was a likely aspie and he succeeded in compromising with other political factions while in office. (Of course, Jefferson was a despicable human being for other reason.) I think it’s certainly possible to conceive of aspies and auties “running the world”, albeit in a very different manner.

  On the issue of cure, which you rightly point out is academic: I don’t think your examples are really appropriate. Depression is not a pervasive condition which is present since early childhood. Only AD/HD is even close to a Pervasive Developmental “Disorder” in terms of the extent to which the condition affects the brain. I’ve been on AD/HD meds for years, so I do know about that. I don’t think the meds have altered my personality, though in fairness I should say that I know of people who felt the meds inhibited creativity and went off of the meds. I do think they have helped me become more organized and better at focusing on the really important projects. I still daydream, stim, tune out of class sometimes, and occasionally have trouble comprehending boring written material. I am the same person I was, just more organized and focused. If I were asked to take more medication which might affect my ADD-like traits like daydreaming, then that would be fundamentally unacceptable to me. Everything’s a trade-off.

  AD/HD isn’t as pervasive as a PDD, by definition. Just so you know, I do take other medications which address other problems from my Asperger’s, like problems with insomnia and anxiety. I am not anti-medication when used safely, but most psychotropic meds address only specific neurological issues. To “cure” a PDD, you’d need more than a magic pill, because the condition is *pervasive.* You’d need to completely alter the brain to produce a different sensory experience, different coordination skills, different mode of social interaction, etc. There are many different traits associated with ASDs, and to remove all of them would be a huge change. Any person who underwent such an operation *would* be very much changed. Personality and abilities are just as intertwined with neurology as disabilities are. I’m not saying that everything about your son is an AS trait–that would be ridiculous. What I am saying is that everything is *connected to each other.* You can’t just go in and slice out “autistic disabilities” without some kind of repercussion. Ability, disability, quirk, personality–it’s all moshed up in the same place.

  I understand the need for those with disabilities to devise education and accommodations which will help them achieve what they want to achieve. What I don’t accept is the idea that this is because of an inherent defect.

• Kristina Chew, PhD
  Mar 19, 2008 at 2:00 am

  @CatM,

  thank you for telling so much about your son and family more.

  My husband has ADHD, even severe ADHD and there’s a lot about it that is very difficult for him, and has been throughout his entire life. He has tried very hard to “treat” it (not quite the right word) and to manage life with it. But neither he nor I are so such that it’s something that could be “taken out” of him and he’d still be him, but not with ADHD.

• Cat M
  Mar 19, 2008 at 3:01 am

  Sarah, please understand that many of my views come from a combination of research and extensive personal experience, which has been daily for more than 13 years (and a triple whammy for the past 3 years; if you include me in the mix, and I’m still not sure whether I do, you could say more than 35 years).

  I do not at all believe or mean to suggest that people with autism cannot love or care for others. On the contrary, I am confident that my sons love me very much, but their way of expressing it is atypical and requires my secret AS decoder ring. It does not consider what a typical person might perceive as an expression of love (the same was true of my husband), such as a gift, a spontaneous hug or expression of love, or a letter.

  Here is a classic example of what I mean by mind blindness: when I drive my husband somewhere as a favor, he never says a word as he leaves the car. He simply gets out and shuts the door. I finally pointed out that this was rude, but he was never aware that he was doing this and never considered that someone else might expect “goodbye” or “thanks you.”

  My children have never spontaneously drawn a picture for me (or anyone), picked flowers, or presented me with a gift unless instructed to do so. To be honest, though, I never noticed until we the AS diagnostic phase, when I was asked about it.

  I think, Sarah, we will probably not come to agreement. I do not believe the mind-blindness theory is flawed, although the terminology may be too pop-cultural. I also firmly believe that autism is a disorder, present from birth, like most neurological disorders (even if their symptoms do not manifest overtly until later).

  My oldest son is 16 and has had depression at least since age 4. There is ample evidence that biological depression exists in even very young children and has a genetic basis. Depression affects how he behaves, what he thinks, his goals. I opposed medication for ages but finally relented and it has made a surprising difference. It changed his personality substantially but hasn’t changed *who* he is. He still loves animals obsesses on videogames, is generally considerate, remains shy, is a good writer, likes to be different, etc.

  While autism is described as pervasive, so much is theoretical and based on correlations, not hard proof. X number of people with AS have larger frontal left lobes; yet some people with AS do not. How is this explained? Is it causative, coincidental, or an effect? What would studies over time demonstrate? I think by pervasive, it means that it affects almost every aspect of life, and I believe this is true. Would my son be someone else if he could suddenly understand sarcasm? If he stopped falling off his bicycle and could catch a ball? If he developed a liking for more than 8 foods? I am sure he would change. (But I’m sure my oldest would develop more confidence if his acne cleared up, too.) I just don’t think anyone has any idea how much it would change someone. I know that people with severely autistic children sometimes feel that the disease is not *who* their child is but rather that it is preventing their child from being who he or she really is. Who is right?

  I do not believe anyone will ever be able to cure autism or asperger’s, only prevent it. And I am not against that; while I believe being on the spectrum so far correlates to both strengths and weaknesses, I really tire of everything being a constant struggle for me and for my kids no matter what strategies we try. Almost every gain requires tremendous effort. It is exhausting.

  Kristina, I’m not sure if a word or two is missing or if I’m not reading something correctly, so I hesitate to respond because I’m not entirely sure what you meant. But as someone who lives with extreme executive dysfunction, I give your husband my empathy. I am on the verge of giving up on the idea that it’s something I can ever overcome and I am fortunately with someone now who understands that I attract “piles” like magnets attract iron filings. I applaud your husband for working hard on managing it, because it is very daunting. If I could take a pill to cure it, I definitely would, but I tried and it did not work in the least (though I did lose 30 pounds and required less sleep!)

  Ultimately, if you could change someone’s brain to the point where it altered their personality, they would likely be aware of themselves as who they became rather than who they were and would not mourn their former selves.

  If you could cure autism, and my kids were cured, there are many things I am sure would change that I would truly miss! I honestly don’t think I would be that great of a mom to “normal” kids and that my kids and I are lucky to be together. We mesh well. But! There’s a lot of hard work that goes into getting through each day around here, and I feel like we move ahead in s-l-o-w m-o-t-i-o-n.

  This is a very nice blog, btw. It has a lot of interesting things to read, and I’m glad it exists.

• Cliff
  Mar 19, 2008 at 11:45 am

  Well, well, well, that was presumptuous. I’m sorry, Cat M, but this will be harshly worded, because I think it must be.

  I am quite clear that it’s a reference to a personal standard of success, thank you. But either you must believe that such things get formed in a vacuum or are arbitrary. Through social communication, one is given the meaning of success, handed down no less than preference in clothing. To suggest that this somehow was still, then, non-preferential is silly; societal standards select for some people.

  Ok, but let’s take your conclusions to their fullest, shall we? Is happiness the goal? Induce drugs into the entire population (amphetamines give a moral high, followed by a long moral low, for example). After all, isn’t what we all need to be happy? Who cares if we are living conscious lives with considered intelligence and live an examined life? Dope works just fine! Actually, forget drugs, lobotomies work, too. They last, as well.

  Again, this is preposterous. Happiness can not be an ultimate goal and standard for doing life. If that were so, let’s break out the surgical tools. But, that aside, let’s move to point two.

  So let’s put the moral value on success? Think yourself inferior to your boss? The president? That CEO who abuses his children on a regular basis? Well, congratulations, you are now. Because it is the immediate station that determines life. It doesn’t matter if the person would qualify for criminal insanity, because success. Social Darwinism and Machiavellian tactics at its finest.

  I mean, people can’t be legitimate for real reasons, can they? It’s all some medical condition? They’re all chemically imbalanced. I’m a chemical imbalance, and you are too (supposing you haven’t done all that the world wishes you to accomplish. Wait, don’t answer that.)! They just need to be fixed. I remember there was a distinct campaign to fix people on subjective categories, and it turned out to be one of the most horrific events in human history. Care to guess what I’m referring to?

  In other words, to put the value of life on such things is a horrible thing to do morally. And, yes, it’s offensive. Really, it is.

  Further notes; you have failed, categorically, to make the distinction between empathy and social receptivity. There’s a huge difference. Autistics, while by definition not as socially receptive, are not impinged on empathy any more than another, so long as the concept of empathy (empathy is in the realm of a conceptual nature, indeed) reaches them (which it may not as much per se, but that’s fixable and workable). Non-autistics frequently don’t have both, too.

  Is finding happiness a good thing? Sure, within context. I mean, to be frank, there’s unhappiness that comes with intelligence and recognizing various disparities and contradictions in the world. Comes with the territory. And yet I’m pretty sure no one would want to give that up. Personal happiness through coming to terms with the state of the world around them within one’s perspective is admirable. An acid trip is not.

  Same thing with being neurologically different. It is valuable for that difference as a defining factor, something to give a different perspective, which may not secure immediate personal happiness (which shouldn’t be a life-goal anyway, because that’s pretty much hedonism), but it gives to the person in the long term and broadens the discussion.

  I mean, yes, I’ll admit right away that autistic individuals don’t function as easily as others in general society. I don’t, I know that. Should that be? Sure, because I’m bringing something new to the table that wouldn’t have been there, and making the world generally a better place in terms of discussion and ideas for that. Narrowing the possibility the discussion for “happiness” (or “success) (two subjective categories, really) is not, and should not be, a goal.

  And, yes, I would miss my autistic self, quite badly, be honest. I have taken depression medication, and to be honest I didn’t like it philosophically, but it affected virtually nothing. It only made it so that certain feelings weren’t as prominent, but they were still there and still legitimate in my thinking. Same with anxiety medication. It didn’t change anything per se, just made some feelings less lasting. I’ve been more radically affected by being taught things, honestly.

  But changing autism would drastically affect the mode and type of my thinking. Hugely, with consequences far reaching in my ability to think the way I can and to the power of that thinking. And, honestly, I would miss my smarter self quite a bit. I’d recognize and be familiar with my current self, but with a compare and contrast the actual effects, and I’ll take that intelligence that, yes, is fostered by autism. Intelligence is in the realm of distinction and observation, and no where else is that so pronounced and isolatable as in the self, so one in the self will have those factors more and more.

  Cliff

• Cliff
  Mar 19, 2008 at 11:48 am

  Ok, I’ll try not to sound THAT bitter again, even when I am. But that got to me a bit.

  Cliff

• daedalus2u
  Mar 19, 2008 at 12:14 pm

  Cat M, Your research has not been sufficiently broad or deep. In

  http://www.jrsm.org/cgi/content/full/96/1/36

  Ioan James writes:

  “Later Asperger went so far as to write: ‘It seems that for success in science or art a dash of autism is essential. For success the necessary ingredients may be an ability to turn away from the everyday world, from the simple practical, an ability to rethink a subject with originality so as to create in new untrodden ways, with all abilities canalised into the one speciality’.”

  The concept of mind blindness is quite appropriate, and it applies to both ASDs and NTs. I think that NTs actually have it worse because many of them simply can’t conceive of the possibility that they have it. That is the main battle that the neurodiversity movement is trying to fight, to get the NTs to appreciate that a difference is not necessarily pathological.

  Being “rude” is a positive action. One cannot take a positive action by being ignorant of the “need” to do something and then not doing it. Your husband did not have a “rude intent”. He was not being “rude”. Your imputation of “rudeness” on his part was projection on your part. If you were in his position, you would only act that way if you were deliberately being “rude”. He was blind to your need to be thanked, and you were blind to his blindness of that need.

  Some people on the spectrum are blind to many of the details of body language and communication, things that most NTs completely take for granted. Many NTs are completely blind to the idiosyncratic interests that people on the spectrum have, and impute pathology in those that have those interests and in the lack of interest that ASDs have in things that NTs hold as important, social niceties such as being thanked for example.

  If autism and ASDs are eliminated, then all humans will be blind to those things that only people on the spectrum can see. Because of their mind blindness NTs won’t even be able to appreciate what is missing.

• CatM
  Mar 19, 2008 at 1:28 pm

  Cliff, I am not going to be drawn into an argument, so I will say only 4 things in reply.

  (1) No, I do not mean “moral” success; I mean *only* what the individual considers success for him or herself;

  (2) I believe that when we find ourselves unable to achieve those essential things that we personally feel matter most (such as a successful relationship, personal satisfaction, occupational contentment), despite making great effort to do so, there is likely a hidden obstacle, such as an underlying neuropathic or psychological reason;

  (3) I am not ready to accept that you (or anyone with AS) only has a “smarter self” because of the AS and that without it, you would be less smart; and

  (4) You remind me very much of my husband.

  Daedaelus:

  My research has been quite exhaustive, thank you, and includes personal experience and reading the original medical literature. Asperger’s name was attached to the condition by Lornia Wang, but this does not mean that every conclusion he drew was accurate, and, in fact, some have since been discredited. Asperger’s statement about a dash of autism being necessary for success is not fact-based or even based on empirical data. It is *speculative.*

  I take your point regarding my “projection” of what is rudeness but disagree that this equates with my being “mind-blind.” My expectation was in accordance with what most in society would expect, and his actions–by social definition–constitute rudeness. I know from experience that successful social interaction is important to him in some circumstances, and he actually appreciates that I point these things out to him.

  His inability to recognize common social expectations impairs his ability to thrive socially and in many other aspects of his life that *HE* considers important, resulting in his unhappiness.

  Mind blindness is not an inability to understand the cause of something; you need to research more yourself, if that is your perception. Mind blindness is the inability to (1) anticipate how others may respond to an action you are going to take; (2) weigh the anticipated response of others in determining what action to take; (3) understand and relate to the emotional concerns of others; (4) assuming that what you see/know/perceive is what others see/know/perceive.

  Lack of empathy is the phrase commonly used in medical literature as a substitute for this coined term.

  I am sure you have heard of the common experiment with the doll and the children? The doctor has a doll (Mary) with a coin in a basket. He has the doll leave the room, and he removes the coin from the basket and puts it in his pocket. He then asks the children where Mary will look for the coin. Children on the spectrum generally say the doctor’s pocket, unable to realize that Mary never saw the doctor move the coin; children not on the spectrum invariably say “in the basket.”

  Of course, as people with AS get older, they generally don’t have an issue with this particular puzzle, but instead they have other issues with an inability to recognize how others think and it goes far beyond social niceties. There are many with spectrum disorders who are quite vulnerable to being manipulated and abused because they do not have malicious intent or tend not to be dishonest and therefore do not expect to find that quality in others.

  You say many who are NT also have mind-blindness in regard to AS people, but I disagree. Those who are NT have *ignorance* in regard to people with AS, but once they learn about the condition and its effects, they learn to understand the AS person better. I have read in the clinical literature that AS people have difficulty transferring a rule that they learn about one thing to similar situations and often have to learn rules for each individual situation. This is not a problem NT people typically have.

  If you are on the spectrum, we can likely argue this forever and you will probably never understand my point of view, just as Cliff cannot understand my point of view, and I am not interested in engaging in the sort of endless arguments I never enjoyed with my spouse.

  But, in conclusion, if you are misreading everything and believe that I am saying there is no place in the world for people with AS, they are horrible, and we should get rid of them, you are 100% wrong. I am saying that from my personal viewpoint and experience, I believe AS is a disorder because the way in which it impacts most of those who have it are impaired in their ability to attain those things that they feel they need to be happy.

  You feel a spectrum condition is an integral part of personality, not a disorder. I remain unconvinced, and I would note that there are experts in the field who fully agree with you, so I am not saying I am right and you are wrong.

  I am saying only that there is no scientific evidence to prove this argument one way or the other, and, in the absence of this, I do not agree with your conclusions. I guess it’s a bit like whether one believes in God or not. Things happen and you can interpret them as evidence or disregard them, and many of us do that to suit our own preconceived opinions until something hits us in the face that is irrefutable.

  I am sure parents with the most severely affected children do not agree that a cure should not be found. And maybe, at some point, they should distance infantile autism from high-functioning autism/AS, because we are arguing this case as though only considering people who are high-functioning, when there are many people with autism who are far from high-functioning, and how could anyone argue that it would not be good if we could find a cure to help those people so they could at the very least communicate?

• CatM
  Mar 19, 2008 at 1:39 pm

  Oh, one more thing, Cliff. While I and others tend to use the words interchangeably, I believe there is a difference between being happy and simply not being unhappy. I don’t personally aspire to “happiness” or believe everyone who is not happy is a failure. But being chronically unhappy, as many with AS are (look it up), is clearly an indication that something is not right.

  You may love yourself and think that you’ve accomplished what you would have liked to because of Asperger’s and therefore it is great to have, but I can assure that there are many others who do not feel the same way about how it impacts their lives.

  Tony Attwood made the point to me that Asperger’s is a spectrum disorder, and let’s say for argument’s sake that there are about 100 different criteria for an AS diagnosis, of which someone must have 60 to qualify. That allows for quite a lot of variation among people with AS and how it impacts them.

• daedalus2u
  Mar 19, 2008 at 4:08 pm

  CatM, I don’t think you understand the point I am trying to make.

  I am not saying these things to be critical of you. I don’t know you at all and please don’t take any of this personally. I am going to belabor the point because I think you really do want to understand that you actually are being “mind blind” even though you don’t want to admit it. It is clear to me that you are “mind blind” about a number of aspects of ASDs.

  You give a definition of mind blindness that is ok, but don’t realize that the definition exactly fits the example with your husband. You are absolutely correct that “most in society” if they acted that way would be being rude. But you were not talking to “most in society”. You were talking to a specific individual. That specific individual didn’t have the intent to be rude and was surprised that is how his actions were interpreted.

  As you say ”Mind blindness is the inability to (1) anticipate how others may respond to an action you are going to take.” You were unable to anticipate that your husband would not respond with a “thank you”. Mind blindness is not only about being unable to anticipate how the average NT responds, it is about how any particular individual responds. When people are extremly idiosyncratic (as some on the spectrum are), it is very difficult to not have mind blindness about them because their minds are so different. To not be “mind blind”, one must be able to understand how the other person is thinking from their perspective. Not from an NT perspective, not from a “most in society” perspective, but from the perspective of the person trying to be understood.

  Perhaps it was only the way that you related the story, but if you had not been “mind blind” to your husband’s lack of communication you would have realized that he was not being “rude”, simply ignorant of the niceties of social interactions that NTs find important. You would have realized that the first time it happened. That he thanked you for the information is beside the point. That simply reflected that he was able to realize that he had been mind blind about the social niceties that were expected and now he knew and could apply the new rule in other circumstances.

  It wasn’t just Asperger who thought that there were some benefits associated with autism and the autism spectrum. It does seem to be only NTs who think there are no benefits and that all autism characteristics are only pathological.

  The “definition” of “high functioning” seems to be “is able to cope well in an NT environment.” How much of what constitutes “high functioning” is being able to resist abuse by NTs? If you look at other groups that have been discriminated against in history, in many cases the only reason they had adverse circumstances was because they were discriminated against. The adverse circumstances due to discrimination are something that could be stopped today with zero advances in medical or scientific understanding of ASDs.

  Many NTs simply can’t appreciate that there are other ways of thinking that are different than their own and that those other ways are not pathological. It is not “pathological” to not say thank you. There are many reasons why someone might not say “thank you” that are not pathological. Saying “thank you” is an arbitrary social nicety. A social nicety that NTs may have internalized and do automatically. ASDs don’t have the same social “autopilot” that NTs do, many of them need to learn and figure out social niceties as if they are learning a completely arbitrary foreign language (which to them it is). Keeping track of all those arbitrary rules is difficult and stressful.

• Cliff
  Mar 19, 2008 at 4:36 pm

  Heh, you’re preaching to someone who was non-verbal, had chronic depression, and was suicidal at one point. Don’t tell me whether or not I am sufficiently unhappy, it’s still doesn’t take the point. Asperger’s? Classic autism, thank you. But thanks for making a ton of assumptions about my life without so much as a whisper to the point.

  And, guess what? Given the choice between non-verbal and NT, I’d head straight back to non-verbal. Would you sacrifice your soul to be able to be the best athlete ever? It’s really not all that different a question, for one whose self is based in certain types of thinking.

  This is, by necessity, a moral argument. We are equating the value of life by determining whether we wanted to eliminate its type or not. So, regardless of whether you want it or not, you’re there. Individual success is still a societally influenced value, and when you’re talking about ending a type you are still in that realm of morality.

  And point two is absurd. What if we really want to spout wings and fly? What neuropathical condition does that cover? Really, now. What if a shy person wants a relationship, but really has trouble opening up to others? Is he neuropathically impaired? How about a politician who wants a position, but is unwilling to cross certain morally lines? He’s neruopathically impaired, too! What if I want to end world hunger, but am strictly speaking unable to command the manpower or influence to? Well, so must I be.

  Oh, and did I fail to mention that circumstance also influences this significantly? Some people will simply have an easier time, by circumstance, becoming the President, be it wealth and opportunity. Does that make others neuropathically disabled?

  In other words, this construction verges out of the ridiculous and into an offensive Darwinistic structure that degrades humanity into a means of effectiveness of rising above others. It’s moral by necessity, and it is offensive.

  You can accept that I wouldn’t be smarter, and that’s fine, because it’s not the point (and in fact, shouldn’t be! Let me be barbed here; you clearly don’t understand my argument, categorically (I hope, because otherwise it doesn’t bode well for you)). I feel that way, and would miss myself. I value the individual difference. I think it fosters my intelligence. Whether it does or not misses the bigger point; it is still a legitimate mode of thinking.

  Oh, and on happiness; certain circumstances cause chronic unhappiness that aren’t linked to being neuropathically impaired. Like poverty. Or a series of non-contingent events. Basically, you’re creating this world in a vacuum where none exists. And you’re no farther from equating morality to an acid trip than you were when you started.

  I’m not even going into what the implications are by comparing me to your husband as a counterargument, or ask whether he accepts being categorically defined as an inferior individual based on social status. Instead, let’s move on to some of this about mind blindness.

  First of all, you’re reliance on the inductive method for such things is typical, especially when it’s not providing clear answers to such things, perhaps because it can’t. But it still doesn’t conceptually frame why, and so look in all the medical journals you want, there are some things that still aren’t there.

  Secondly, you have failed to make it clear whether this is a taught or innate ability. I could well argue that empathy is, at some level, a taught ability. It is still a conceptual framework for understanding certain actions within terms of various actors, usually under concrete ops. Just because neurotypical children pick up on this more easily does not mean that autistics don’t; they do, given the information taught to them in a manner in which it goes through a more strained social network, for the autonomy of the individual.

  Secondly, mind blindness is, by its very nature, a form of ignorance. In fact, blindness itself is, by its very nature (and certainly within this context) a form of ignorance. So you can’t create such a limited construct.

  Third, you’re creating these dichotomous absolutes of person. We’re dealing with tendencies of ability, not ability. I can talk, but I’m fully classically autistic. Am I a violation of sacred rights of autistic vs. NT being? In your construct, absolutely.

  Finally, you’ve said now to three people (one implied) who are reacting similarly to your argument that they can’t understand your argument. Frankly, you need to look at what’s being said, because it seems that the criticisms haven’t been addressed under this false shield of misunderstanding. Look at what’s being said, because, frankly, you’re just stereotyping at this point. That’s a form of not understanding, no?

  Cliff

• Sarah
  Mar 19, 2008 at 4:47 pm

  So when autistic people don’t understand NT people it’s “mind-blindness”, yet when NT people don’t understand autistic people it’s just ignorance? Gah. I disagree completely that merely understanding about AS makes people understand the aspie. Plenty of people in my life know what AS is and that I have it–and guess what? They still don’t understand me sometimes! My parents, for instance, were unable to figure out that trying to “discuss things” with me during a meltdown just made things worse for me. This was after knowing me my entire life. And yet *I’m* the only one who’s supposed to lack empathy and “theory of mind”? I’m sure you make every effort to understand your sons/partner, but please don’t assume that because someone’s read a few books on AS they’ll understand the aspie well in every situation. Unfortunately, it doesn’t really work like that in my experiences. Besides, this can easily work the other way around. Many aspies report improved social skills after reading etiquette manuals and the like. How is this any different from NT attempts to understand aspies?

  If you were to go to a foreign country, you’d likely make social mistakes because you didn’t know the social customs. That’s not mind-blindness. It’s like that for people on the spectrum, only we often have that problem within our own cultures. What you and researchers call “mind-reading” is really just social intelligence. I find the terminology of this utterly bizarre.

  The famous test you refer to is pretty flawed and may not measure what psychologists think it does. I’m pretty wary of using that as definitive “proof” of autistic “lack of empathy.” I also note that autism researchers commonly use a definition of “empathy” which is not commonly used anywhere else. That’s part of the problem, right there.

  You don’t seem to understand Cliff’s point about success. Success is socially contingent, and even so many people on the spectrum have unusual ideas about it. (For instance, many actually *prefer* less social interaction.) None of your points about autistic people being unhappy with their lives necessarily refute the point. It’s pretty obvious that social influences influence our ideas about what we need to be “happy.” Besides, many people will try and convince a spectrum person that they can’t be happy if their life is atypical. Some people will insist that you can’t possibly be happy without friends, for instance, even though that might not be entirely true for the individual.

  I think you’re relying entirely too much on what the “experts” say, without acknowledging that many of these experts may be biased and producing shoddy science. Many of the people here have also done a lot of research on the subject, as well as experiencing AS first-hand. Frankly, I find it a bit insulting that you would say that people on the spectrum would “argue endlessly” and never come around to your point of view–by virtue of being on the spectrum. Do you not see how this may apply to yourself as well? And do you not see how this is a trait common to many people with strongly-held opinions, autistic or not? Heck, by this definition our President is autistic because he refuses to change his mind or admit a mistake. If you’re going to argue that AS is a “disorder” then do so, but not on the grounds that it’s classified that way now. That’s purely circular.

• C
  Mar 19, 2008 at 5:51 pm

  Hi CatM,

  As a good friend once told me, you are doing God’s work. Your children are lucky to have you to advocate for them. I liked what you have written, mainly because you write with incredible love and admiration for your children.

  Hang in there, and keep writing, I’m gaining new perspectives and I can always use more!

• Kassiane
  Mar 19, 2008 at 6:52 pm

  Is saying “I love my children but (list of everything one can’t stand about their wiring)” kind of like “I’m not racist but (list of racist statements)”?

  Because that’s how it reads to me. That is EXACTLY how it reads to me. Cure neuroracism now.

• Cat M
  Mar 20, 2008 at 3:01 am

  Daedalus, actually I did know that my husband would not say goodbye when he exited the car and I was not surprised. He does it all the time. I did not tell him that this was rude because I was offended or angry; I told him because I figured he did not even realize it and at some point, someone else might get offended (particularly since he doesn’t tell anyone he has AS). Prior to knowing he had AS, I always thought he was upset at me when he did it; now I fully understand why he does it and it doesn’t make me angry.

  Considering I am likely on the spectrum myself, I have no doubt I exhibit mind blindness at times, though I try to employ a cognitive approach to understanding others (I learned in childhood that I was very bad at reading people). Tony Attwood wrote that women with AS tend to be more adept at social interaction, possibly by virtue of observation. This would match my experience.

  Cliff, I really think I just don’t want to interact with you. You are hostile and defensive, and the past has shown me that interacting with people like that stresses me. Sorry. I do apologize for assuming you had “AS” rather than high-functioning autism, but many experts are not even convinced there is any genuine distinction between the two and that they are the same. Also, sentences like “And you’re no farther from equating morality to an acid trip than you were when you started,” make no sense to me grammatically. Sorry. I find it a bizarre metaphor.

  Sarah, mind-blindness is not defined simply as a matter of “not understanding” someone. Also, many (most) parents of spectrum children have spectrum traits, so it would not be surprising if your parents sometimes exhibit mind blindness.

  I do not agree that mind-blindness is the equivalent of not knowing a rote list of foreign customs, which can be subsequently memorized and applied. There are some social “rules” that are easily learned, but mind-blindness is more pervasive than an occasional misunderstanding and, in my experience, often not even recognized as a problem by the person with AS. If it affected NT people just as much, autism probably would not be called autism.

  I see examples of mind blindness every day (and have for years) from 3 different AS people (four if you count me), and it far exceeds what I experience with neurotypical people, so you are not likely to convince me that it’s not an autistic trait and I’m wrong. But as I said before, not everybody with a spectrum diagnosis has every single spectrum characteristic nor do they have them to the same degree. My youngest son has noticeably more empathy than my middle one yet he is the one more people readily recognize as autistic (he was first diagnosed as classic autism and subsequently reclassified as AS).

  I recommend reading more actual clinical studies rather than what books encapsulate and present for mass consumption, which is often distorted.

  Like Cliff, you have seemed predisposed from the outset to respond to anything I say with extreme defensiveness (such as automatically assuming the term self-centered is something you should get upset about), as though the fact that I disagree with you about whether AS is a disorder transforms me into a horrid AS-hating monster. Frankly, I don’t need any more stress in my life.

  And I do not apologize for believing that people on the spectrum are less likely to be able to see someone else’s viewpoint when is at odds with their own. This is my personal experience, it correlates with most of what I have read, and I definitely see it all through this thread. I have readily acknowledged all of your different views, even if I have not agreed; I have said more than once that I am not holding my view out as an “absolute” right view. I have acknowledged that not all people with spectrum disordres are cut from one mold. I have seen no attempt to acknowledge validity in anything I have said, except perhaps in Daedalus’ latest response. I am fine with you not agreeing with me, and I was more than happy to try to make myself more clear; you are not fine with the fact that I do not agree with you and launch into attacks, suggesting that I must think my “wrong thoughts” because I’m not informed. I am extremely informed.

  Also, I never argued that autism is a “disorder” because that’s how it is now classified. I believe I said it’s a disorder because many people who have it find their ability to achieve personal goals impaired, resulting in unhappiness. You may feel success is a de facto social construct, but I disagree it exists that way for everyone. I do not believe my children–particularly my youngest–uses social expectations to determine his goals or measure his success. I’m pretty sure he does not imagine that others judge him; he really only focuses on how others treat him. He gets unhappy if someone sends him a note that says “don’t talk to me anymore, you bother me” or pretends he’s the wind and they can’t hear him.

  The people I know with AS have wonderful humility. My husband never attempts to impress people with his educational background or income nor does he look down on others for being in a lesser position. I’ve never heard my kids brag about their achievements or their possessions, either. So, I disagree that everybody’s goals are by nature socially derived, as though those are the only kind of goals that can exist. At one point, my youngest son’s goal was to find a word using every vowel, and he worked on this problem for months. I once set a goal for myself of memorizing all of Act II, Scene II from Shakespeare and reading all the classic books. No social reason, it was just my personal goal, which to most was probably meaningless, and one that I am sad to say I never accomplished.

  I work in clinical medical publishing. I am experienced in evaluating clinical material and do not rely on what “experts” say. I instead rely on data presented in the actual studies and weigh them according to statistical significance, whether they are correlations or causative factors, etc. Everything related to AS is correlation or theoretical, hence the pointlessness of believing there is a “right” answer; I am certainly not telling you I am RIGHT about anything I say. These are my perspectives and opinions, I cannot prove anything, but I can present solid data to support my views. If you present equally solid data to contraindicate them, I am happy to examine it.

  Hi C and thanks for being a kind voice. When my kids were first diagnosed, I told someone at work who said “I’m so sorry.” This took me aback, and I said “Why would you be sorry?” I am frustrated right along with them and I hurt for them, but I’m not sorry. After all, they were the same before the diagnosis as after, and having the diagnosis has allowed us to make wonderful gains in the past year. Our relationship is better than ever.

  Kassiane, if you meant what you wrote and are not simply a troll, I am sorry for your spitefulness. I really don’t care how anything I wrote reads to you because it does not change anything about my life’s reality. Your opinion on whether I love my children is irrelevant as long as they think I love them. I never listed anything that I “can’t stand about their wiring,” other than their sorrows and struggles.

  I seriously find this open hostility toward someone simply for not sharing your opinions sad, because I am sure there is much we could learn from one another, but I don’t find it worth it to wade through this deep sarcasm, the personal attacks, and deliberate and gross mischaracterizations of what I’ve said in order to repeatedly find offense where none is intended.

  I had read that those with AS who are advocates of the theory that AS is not a disorder and should not be cured are extremely hostile toward those who want to see a cure (prevention) for autism. I see this was not misrepresented.

  While this is certainly an interesting blog, if the goal was for me to keep my opinions to myself, you win. I guess most of you do not support intellectual diversity with as much fervor as you support neurodiversity.

• Kassiane
  Mar 20, 2008 at 3:10 am

  You write long mean spirited diatribes and call ME a troll? How dare you? You talk about how much you hate this very integral part of your kids–as do MANY pro cure parents–AND THEN WONDER WHY PEOPLE ARE OFFENDED.

  That isn’t mind blind, incidentally, that’s neuroracist and willfully ignorant. There’s a difference. Cure THAT.

• Cat M
  Mar 20, 2008 at 3:14 am

  I will say one thing. I never said that I “hate” anything about my kids, and I disagree that this is an “integral” part of them. Please don’t imagine you intimidate me with your “How dare you” blah blah blah. You are going to win very few converts to your cause with that kind of attitude. If I had never once thought autism was something that should be cured (prevented), I would certainly think so after one conversation with you.

• Cliff
  Mar 20, 2008 at 3:16 am

  People DO tend to be angry when you are promoting ideas which specifically are written to demean them as human beings.

  You can say that such a reaction is against intellectual diversity, and that’s fine. Of course, you also have to then accept the fact that you support tolerating racism, Nazism, and misogynistic ideas. And then understand people don’t feel the same way about being degraded.

  And, yes, people have a right to be hostile when such ideas are being sprouted. Social Darwinism is not considered acceptable morality, really.

  And as to goals as socially derived; so, honestly, where do you think they come from? God-given direction? Randomness? I’m sorry, but I would go far enough to say that every goal ever taken by a person has a significant social factor to it, with the exception of sustenance.

  The anger here is not illegitimate, CatM. It’s a tempered reaction to others telling them that only happy, successful people have value, and that any difference they have isn’t worth it, since it doesn’t promote your sense of a normative ideal. That, to me, is far more discreetly anti-intellectual than reacting in a heavy-handed fashion to truly hateful ideas.

  Cliff

• Kathy
  Mar 20, 2008 at 4:34 am

  Cat M, I find your posts very thoughtful and interesting.
  Whilst I do not necessarily agree with everything you say, you have conducted yourself in a polite and courteous manner, amidst much hostility and intolerance of your views.
  You are entitled to express your opinion, as are we all.
  For me personally, the impression I get from your writing is that you love your kids dearly.
  I sense too, that you are a gentle, kind soul, tolerant of other’s views.

  Don’t stress, my dear.
  It is certainly not worth it!

  And please don’t be put off commenting, further.
  As I said, I for one have enjoyed reading your posts.It is good to have different perspectives

  Best wishes to you and your family.

• Regan
  Mar 20, 2008 at 7:57 am

  I have no particular comment except that this is a thought provoking comment thread.

• daedalus2u
  Mar 20, 2008 at 9:00 am

  CatM, You just admitted that prior to knowing he had AS you imputed motivation to him that was not present. That is “mind blindness”. Your blindness to his mental state and the projection of your own mental state onto him.

  Your definition of “disorder”, “something that impairs the ability to achieve personal goals resulting in unhappiness” covers a lot of human variation. At one time, skin color was enough to make one a slave, unable to own property, to vote, to be considered a human being. People with “skin color disorder” were mostly illiterate and uneducated. “Skin color disorder” was a pretty severe disorder wouldn’t you say? Good thing medical science has advanced to the point where “skin color disorder” doesn’t cause people who have it such severe problems. It hasn’t been completely “cured” yet but some people with it are able to be educated, go to good universities and get good jobs, one person with “skin color disorder” is even running for president.

  Maybe in time, medical science will be able to do for autism spectrum disorders what it did for “skin color disorder”.

• CatM
  Mar 20, 2008 at 10:04 am

  Daedalus, I also admitted that I have been told I am most likely on the spectrum. It certainly would not be surprising if I had “mind blindness.” I do not pretend to be neurotypical.

  Your analogy is worthless. A superficial physical characteristic cannot be equated in any way with a behavioral issue. Also, there is a difference between someone running interference to prevent you from achieving your personal goals and finding out for yourself that even with all the love and support others around you can muster and as much effort as you can manage, you still cannot accomplish them.

  If, intellectually, you truly believe that wanting to find preventions for autism = racism, then trying to discuss anything with you is a complete waste of time.

• daedalus2u
  Mar 20, 2008 at 10:36 am

  CatM, you really don’t understand. There are aspects of both in ASDs. If the behaviors at question are superficial, then the analogy is apt. If an attribute has no impact on a person’s job performance, then for it to be included as a criteria for success in that job is discrimination. One’s skin color is an attribute that has no impact, neither does rocking. Is rocking “superficial? Or since it is a behavior by (your) definition it can’t be?

  You are lumping all the “bad” attributes associated with autism together and labeling them as “autism”. All the good attributes associated with autism you are saying are independent of autism. There is not enough understanding of autism to be able to make that distinction.

  It is well known that one of the major negative consequences of autism is being bullied by NTs. Vulnerability to being bullied is an autism characteristic.

  http://www.autism.org.uk/content/1/c6/01/18/57/bullying.pdf

  One of the quotes from the article: “My child is bullied – the school says it is his fault for being ‘annoying’.” Is vulnerability to being bullied an autism behavior that should be extinguished in the ASD person? Or is vulnerability to being bullied something more like “skin color disorder”?

  That you are unable to see the analogies in discrimination based on immutable characteristics of an individual be they skin color or behaviors that make a person the “odd one out” and so worthy of attack. These are problems of society and of NTs, not of the individuals that are the “odd one out”.

• C
  Mar 20, 2008 at 11:32 am

  Way to go CatM! A lesser person would have cracked many entries ago.

  C

• Chuck
  Mar 20, 2008 at 12:44 pm

  Daedalus2u,
  How do you differentiate between a “good” attribute and a “bad” attribute? There is not enough understanding of autism to be able to make that distinction either.

• CatM
  Mar 20, 2008 at 1:08 pm

  Actually Daedalus, other than mind-blindness, I made no specific comments about any autistic attributes. Everything you are saying is from your own mind and not in response to anything I said about autism.

  What I said, and am sticking by, is that autism is a behavioral condition and not a superficial one like skin color and therefore cannot be equated to racism, where the ONLY negative thing about having it is someone else’s negative reaction. I believe some of the greatest difficulties people with autism have–the ones that negatively impact the most–often result from the condition itself and not social reactions to it.

  I did not say one could not find analogies; but you were trying to equate them as “wholes” not simply finding correlations between parts of them. The overall comparison is highly flawed.

  There is a difference between not being able to ride a bike because someone does not like you and takes the bike away from you or not being able to ride it because you do not have any legs and you do not know of any other way to ride it. I guess you can blame society for descriminating against you because they built a machine that requires legs to use or you can just accept that not having legs sometimes makes certain things more difficult.

  My father is legally blind. There were many things he could not do because of it and some things he could not do because of others’ prejudices. Driving was something society would not allow him to do, which he tried to do once, and discovered he really could not do it and it had nothing to do with what society said.

  *I* see autism much the same way. Society is not standing in my son’s way of remembering to bring a lunch to school, take his pill in the morning, remembering where his glasses are or to put them on, or to be able to stand loud noise, which simply exists in life. HE would like to not have those issues, and I doubt he cares one bit what anyone else thinks about it.

• daedalus2u
  Mar 20, 2008 at 1:24 pm

  I would say that just about all the savant abilities are good attibutes. Being able to tell what day of the week a certain date is is a useful skill. There are often superior tone discriminating abilities, perfect pitch for example, hyperlexia.

  There is a great deal of muddled thinking in autism research where any “difference” is considered pathological, even if that difference results in superior abilities. I think this imputing pathology whenever there is a deviation from what is “normal” is a symptom of the “mind blindness” of those autism researchers who pathologize superior abilities.

• daedalus2u
  Mar 20, 2008 at 1:41 pm

  CatM, did you read the article I linked to? Children are made suicidal by being bullied because they are autistic. What part of that is to be blamed on autism? What part of that do we need to wait for a “medical cure” to deal with?

  Who has the greater “mind blindness”, the autistic child who can’t deflect bullies or the NT bullies who perceive the autistic child as an object to be injured and not as a fellow human being?

• Chuck
  Mar 20, 2008 at 2:26 pm

  daedalus2u,

  Your post make you appear to be one of those autism researchers who pathologize superior abilities. Is this a reflection of your “mind blindness”?

• daedalus2u
  Mar 20, 2008 at 2:35 pm

  Chuck, huh? please elaborate.

• Kristina Chew, PhD
  Mar 20, 2008 at 2:46 pm

  @Kathy—you wrote

  “It is good to have different perspectives”

  I second this, for sure!

• Chuck
  Mar 20, 2008 at 4:11 pm

  daedalus2u,

  Do you attribute “savant abilities” to underlying ASD diagnostic behaviors, or are you saying that “savant abilities” are evenly distributed both in the ASD and NT populations? If “savant abilities” are attributed to OCD to the exclusion of more necessary behaviors and information, why is it a good thing?

• daedalus2u
  Mar 20, 2008 at 4:37 pm

  Savant abilities are not necessarily a part of the ASD diagnosis, and so are not ASD “diagnostic behaviors”. Savant abilities are not equally distributed in the NT and ASD populations. ASD individuals have them to a much larger extent. That makes them a component of the broad ASD phenotype.

  Are you saying it is the presence of the savant behavior by itself that is bad or is it the absence of something else that is bad?

  An ability that is useful in some circumstances is useful in some circumstances. If that ability is superior, it is not pathological. If a particular superior ability is accompanied by deficits in other abilities, it is the deficits that (may be) pathological, not the superior ability that may accompany the other ability deficits.

• Sarah
  Mar 20, 2008 at 4:58 pm

  CatM, you don’t seem to be understanding what I’m saying about “mind-blindness.” I don’t doubt that autistics are often bad at it, but I don’t think neurotypicals are very good at it either. I think that most members of the majority (read: white, middle-class, neurotypical) don’t actually understand people from other cultural subsets all that well. They just don’t frequently suffer consequences for this, because white, middle-class, neurotypical people can usually count on having some form of social power. That’s not understanding “theory of mind,” that’s having the power to institute social norms.

  The ignorance I’ve faced from others is far from limited to my relatives. Besides, some of my relatives (like my mom) are the furthest thing from autistic yet still display “mind-blindness” with regards to me. The world is full of examples of people who failed to take other viewpoints into consideration–especially people in dominant groups, like I said before. I’m not saying this might be different in people on the spectrum, but I think a lot of discourse on the subject sets up a false dichotomy between autistic and NT. If only most NTs really did have this ability! Maybe there’d be less problems in the world. It is my understanding that the whole idea was originally suggested by Dr. Simon Baron-Cohen. I’ve read much of his work, and I think it’s horribly, horribly flawed. There are better ways to measure “theory of mind,” which have been used on NT infants but not autistics as of yet. Most theories which try to explain what “autism is” are quite simplistic, I’ve found. It was originally defined by behaviors, not by alleged “mind-blindness” as you suggest.

  I don’t doubt that you are informed. I was merely pointing out the “appeal to authority” fallacy.

  Still, it would seem to me that you still might be a bit unclear on the social model of disability (please don’t take offense to that). No, it is not society’s “fault” that your father was unable to drive a car. I don’t think anyone would suggest that. But, it is because of society that the ability to drive a car is such a big deal in the first place. (It’s not as though driving is a natural, inherent part of being human.) Disability rights folks might advocate for disabled people to have improved access to other forms of transportation to correct this problem. (Indeed, this has happened in many cities.) The general population can benefit from public transportation as well, so it’s really a win-win. Ability and disability are real, but how society responds to this can and does change over time. This concept can easily be applied to autistic people as well.

  Jim Sinclair’s “Don’t Mourn for Us” does an excellent job of explaining why autism is not merely an “appendage” to the person, or an illness which somehow blocks the “true” person. To me this way of thinking about it is not logical.

  I am very sorry that you are stressed and frustrated by the responses you have received, but in the eyes of others you are being no less stubborn and adamant in your stance. I don’t think anyone is saying that you’re an “AS-hating monster.” That’s a strawman. I can assure you that if I have misinterpreted or mis-characterized your words, it has not been deliberate. If you have been met with “hostility” it is to your ideas and not your person. I believe in freedom of speech, but not freedom from criticism. No one is trying to “silence” you, but I find it difficult to allow many of your ideas to remain uncontested (just as you apparently do with mine.)

  Even if adamantly standing by one’s ideas *is* an autistic trait (and I don’t agree with this 100%), it is still not appropriate to bring this up amidst a heated discussion. For me, it feels dismissive, as if you’re saying that “of course you wouldn’t be able to see another point of view, you’re autistic.” It’s as though you’re saying that your opponents haven’t come around to see your POV not because they legitimately disagree, but just because of autistic stubbornness or close-mindedness. This might not be your intention, but to me it feels like that’s what you’re saying. Surely, if you were arguing with NTs you would not suggest they didn’t agree with you because they are NT. (BTW, I might point out this trait is more common than you suggest. Have you ever witnessed an abortion debate, for instance?)

• Chuck
  Mar 20, 2008 at 5:56 pm

  If the savant abilities would not exist without “restricted repetitive and stereotyped patterns of behavior, interests and activities”, , then it is part of the diagnostic criteria, regardless of the subject matter of interest.

  Are you trying to differentiate the DSM-IV criteria into “good” and “bad”?

• daedalus2u
  Mar 20, 2008 at 6:29 pm

  No Chuck, there are people who fit the various diagnostic criteria who do not have savant abilities.

  The “restricted repetitive and stereotyped patterns of behavior, interests and activities” are not among the characteristics of autism usually thought to be “bad” (at least not by me, you would have to provide a definition of “bad” if you think they are). People can have these “restricted repetitive and stereotyped patterns of behavior, interests and activities” and also be considered “high functioning” (and so their experiences are considered irrelevant to the NT parents of ASD children).

  I am not sure what you are trying to get at.

• Regan
  Mar 20, 2008 at 7:35 pm

  I am not a TOM expert but is there anyone on the planet who really “understands” what anyone else is thinking? It seems to me if that were true people wouldn’t cut friends off, get miffed, have to explain, or get divorced because “s/he doesn’t understand me”.
  I know “typical” people who are annoying or seem to be perseverating because they tend to exclusively talk about their model railroad, showing pictures of the grandkids, how their team is doing, or some other pet interest.
  Judging from some of the social hypocrisy of “acting politely” but behaving badly, I am not sure that people in general have “social” behavior nailed down at all times, and that does depend on context–the boys spitting on the sidewalk are cool to their peers and offensive to Grandma.

  At what point does this cross the line from personality to pathology?
  (I suspect that this is in the comment thread, but I am a simple minded person and somewhat lost in the sophistication of the discussion.)

• Kassiane
  Mar 20, 2008 at 7:39 pm

  CatM, attacking me twice doesn’t make your stance look stronger. In fact, it rather makes it look weaker. Calling me a troll, then “backing it up” the way you did? Please.

  I didn’t even ask if you know who I am, though I could. I could also ask if “C” is your sock puppet, though I won’t.

  I WILL, though, ask why in heaven’s name you are presenting part of who your children (and presumably you, though the self loathing is pretty sad) are as detestable. Why? Why is autism something to be stamped out but not Intolerance Of Others?

  Hmm?

• daedalus2u
  Mar 20, 2008 at 8:46 pm

  Regan, exactly right, there isn’t one ToM, there is one for each person that has ever lived. The various ToMs of the NTs are more similar to each other than they are to the ASDs.

  As I see it (this is my present working hypothesis of ToMs), the NT ToM is more complex, but also more rigid than the ASD ToM, which is simpler but more flexible. The ASD ToM takes longer and has a hard time emulating the NT ToM because it is more complex with lots of arbitrary stuff in it.

  To use an analogy, the NT ToM is all in “hardware”, it can do communication with NTs very fast by comparing the resident hardware ToM with the ToM of other NTs and simply doing perturbations. This only works if the ToMs of the two NT individuals match up pretty well. In contrast the ASD ToM is much simpler but emulation of the NT ToM has to be done in “software”, it is slower and more cumbersome and takes a lot more effort to emulate the NT ToM. But the ASD ToM is more flexible in that it can emulate more and more different ToMs, just not to as high a fidelity as the NT ToM.

  The problem for NTs is that when another person’s ToM doesn’t match up with their own, they don’t have another method to fall back on. Mostly they project their own ToM onto other people even when it is inappropriate and has zero chance of working. When it doesn’t work, they then “externalize” the communication difficulty that the person they don’t understand is pathological in some way.

  The “problem” is that when your ToM is in “hardware”, and that “hardware” doesn’t support having a certain thought, you simply can’t have that thought. The structure of your brain simply doesn’t support it. I think this type of thinking is readily apparent in certain religious groups. They simply cannot conceive as thinking of things other than as by “faith”, so they assert that being an atheist requires as much “faith” as believing in God. This is the “mind blindness” that many have. They are simply unable to conceive of a thought because they don’t have the neural structures to support it. There is plasticity in the brain, and one can learn to think in other ways, but it is difficult and takes effort. If there is no desire to do so, the individual remains “mind blind”. It is like trying to run Windows on a Linux machine without an emulator, it can’t work.

  To be sure, ASDs can be “mind blind” of NT ToMs too, but generally it is because the complex ToM doesn’t “fit” in the space the ASD has for it. It is like trying to run a 500 MB Windows operating system on a Linux machine with an emulator using 50 MB of ram. It can work, but it is really “clunky”. The operating space that ASDs have for ToM stuff is just smaller because the remaining 450 MB is used to do other things.

  But if you are trying to do “simple things”, such as math, physics, chemistry, things that are constant and predictable, a 50 MB Linux machine can do them faster and better than a 500 MB Windows bloat-ware that does “everything”, even stuff you don’t need.

• Cat M
  Mar 20, 2008 at 8:54 pm

  Kissiane, it wouldn’t matter if you were the Queen of England; I find your attitude abhorrent, rude, abrasive, baiting, and ignorant. You bring to mind the lyrics to the Beatles song “Revolution”: …if you go carrying pictures of chairman Mao/You ain’t going to make it with anyone anyhow.

  Really, you do your “movement” no favors by positioning yourself as one of its representatives.

  You have yet to offer anything resembling a rational argument (or irrational) and simply resort to ad hominem attacks, which are nothing more than an indication of intellectual weakness. People who are truly knowledgeable do not need to resort to attacking the person doing the debating but instead attack the argument. Because you have offered no argument of any kind, you’ve left me nothing else to attack.

  Until you demonstrate that you are capable of discussing something without launching a personal attack, I have no interest in playing your little Cat-and-mouse game and giving you the satisfaction of seriously considering your questions and providing answers that you will not waste a single brain cell on and are pre-determined to retort “You’re just this evil bad person! You’re a nazi! You eat autistic babies for breakfast!”

  Go play with someone who enjoys that sort of game; I certainly don’t. If I wanted to engage in a battle of wits with what appears to be an unarmed opponent (thank you, Oscar Wilde), I’d phone in to a radio talk show.

  Regan, hopefully you (and others) are not relying on my verbal description of mind-blindness as a statement as to what it actually is considered to be. I am not the one who formulated the term and am only trying to paraphrase into short sound bites what I understand it to be, but it is far more complex. As I tried to say, it is not simply misunderstanding someone. For a very thorough analysis that makes use of dozens of references of scientific, repeatedable studies (and not just Baron-Cohen for the Baron-Cohen foes out there) that demonstrate mind-blindness (or however you want to describe it) is real; it is far more prevalent in autistic people and can even be seen as a predictor of autism; and it correlates with results found on brain imaging studies.

  http://www.icn.ucl.ac.uk/2001/frith01Neuron.pdf

• Regan
  Mar 20, 2008 at 9:15 pm

  Thanks CatM,
  I’ll look at the reference. I have no particular bone with Simon Baron-Cohen, who means slightly more to me than Sacha Baron-Cohen (As I said, not a TOM expert or even amateur).
  What I wrote is just my own observation over the years of hearing explanations of the distinctions of autistic v. normal behavior and seeing that sometimes normal is not quite the ideal presented and that there are overlaps.

• Cat M
  Mar 20, 2008 at 9:30 pm

  One of the things the review article points out is that how people perceive what is meant by mind-blindness is not actually what science (such as the man who coined it) means by the term.

  In a way that is ironic isn’t it?

• daedalus2u
  Mar 20, 2008 at 10:44 pm

  Be careful reading Uta Frith’s work. She has a tendency to impute pathology to abilities that are simply different.

• daedalus2u
  Mar 21, 2008 at 7:04 am

  It really needs to be appreciated that all communication is two-way. It takes two parties to communicate. If there is a problem with communication, the “problem” cannot be localized to only one of the parties. All social interaction is at its core, some type of communication.

  If NTs and ASDs are unable to communicate, which party should try to make accommodations? The party with the “pathology”? Or the party that is considered “normal”?

• whatamess
  Aug 19, 2008 at 2:09 pm

  Neither children nor adults with autism need to be “cured” of their autism. They may need to be cured of their allergies, if any exist (it seems common), or helped with language, such as with speech therapy…however, to imply that their way of thinking is wrong, because the NTs expect something different, is no different than to say that NTs, who normally want others to “read their minds” instead of speaking up, are abnormal. Honestly, it seems that the world has become less tolerant as the years have passed. To say that children or adults with autism have no empathy, is also wrong. I’ve met my share of NT children who are very self-centered and amazingly enough, society claims they are “developing at age appropriate levels”. Years later, those same people must either be taught some manners or they continue to be self-centered. Lying is also a “typical” child thing to do, as many doctors and others will preach…yet we all know it is wrong…and the neurotypicals are the ones who have later to be taught not to lie…while most children with autism only say the truth, as they see it, and never have to be taught to NOT lie. It seems to me that there are many NTs out there who develop at an appropriate level, and when an NT does such things as lie, it is considered ok and “not behind” because they are only 5, or 6, or 7…but when a child with autism NEVER lies, they are said to be “developing abnormally” or be told they have a disorder…Maybe it’s that they are truly “ahead” in so many areas, that was must be taught to NTs is already part of the autistic child’s personality…but an NT would never admit to this…How intolerant of NTs to assume that because someone is different they must have a disorder, even if all those things that children with autism do are actually “ahead” developmentally…

  This entire autism mess has been created by those who want everyone to be the same, by those who have no tolerance for differences, yet claim that autistics have no empathy…

  And of course, by the thousands of parents out there who instead of looking within themselves, they decide that their child must have a disorder if others don’t accept them…

  Again, we are not talking about speech delays…we’re not talking about allergies…we are talking about wanting to change the way someone acts or thinks only to please the “NTs” of the world…

  I know my son will grow up to tell these NTs who judge him so much, to “show some empathy” instead of telling him that there’s something wrong with him.

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