Shades Of Grey

19 Sep

Not Mercury wrote a great post on causes, cures and definitions of autism. The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other. This makes it extremely difficult to have impartial debate.

This is especially true when one considers the medium we are attempting to debate over. I have never met _any_ of the people I consider close allies. Neither have I met _any_ of the people I consider to not be allies. We converse solely via a web interface. My job makes me painfully aware that this is not the best way to promote calm and relevant discourse.

There is also the added wrinkle that we are _all_ either autistic, the parents (or close family members) of autistic people, or people who work with autistic people. Or all, or some. This introduces an emotional component that is also unavoidable.

Leaving aside all thoughts of evidence, autism is (depending on who you speak to):

1) Mercury poisoning, ostensibly via thiomersal.
2) Vaccine related with maybe a genetic inability to excrete mercury, primarily gained from thiomersal in vaccines.
3) Genetic with a strong possibility of vaccine involvement, notably MMR.
4) Genetic with an unknown environmental ‘trigger/s’ which could include mercury.
5) Genetic with an unknown environmental ‘trigger/s’ but which currently is not indicated to be vaccine related.
6) Genetic.

That’s grossly simplifying the issues, I know that, but we have to start somewhere.

To me, options 1 and 6 are total non-starters. There’s no evidence to support these viewpoints and lots of evidence (academic and anecdotal if that’s your thing) to refute them. Also, to me, from a viewpoint of being a valid route of investigation, all other options are on the table. That is *not* to say I agree with some of them as theories, clearly I do not. I’m saying they have the potential to be correct. This is where the weight of evidence comes into play and we all make our choices depending on what speaks to us individually. I want to stay away from that evidence in this post. I want to try and focus on how our definitions influence our choices.

If we see autism as primarily an acquired thing which negatively affects people as a consequence of that acquisition then that colours our choices. We would want to remove the autism. Likewise, if we see autism as something that people _have_ but can be both negative as well as positive then that also colours our choices. We might want to remove the autism and accept the cost of losing the positives. Again, if we see autism as something that simply _is_ that has both negatives and positives then we may wish to retain the autism and try and work on the negative aspects.

So to me, the answer to Not Mercury’s post, is at its crux, the difference between something someone _has_ and who someone _is_. And how we arrive at that decision all originates from how we define autism. Advocacy undertaken by autistic people and their allies draws comparisons between gender, racial and sexual emancipation and their own neurology. Advocacy undertaken by non-autistic people and their allies paint autism as something medical to be defeated.

Having autism versus being autistic. Does it have to be an impasse?

It would seem that it does if we carry on in the same pattens. However, as long as we do this then ‘versus’ will carry on being the modus operandi of this debate.

Would it be an acceptable compromise to accept that _autism_ is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc and that _autistic_ is a word used to describe these very same people but is used to refer to who they are and _how_ they are?

We cannot escape that fact that the nature of autism often encompasses disabling comorbidities. But likewise we should not ignore the fact that autistic people have innate strengths and abilities that non-autistic people simply do not. Is it too much to ask that – *regardless of how someone came to be autistic* both these facts need to be addressed and accepted.

If someone is autistic because they are poisoned from a vaccine we still need to be very very careful regarding terminology. The fact that they are who they are is still worthy of respect and rights. If someone is autistic because of their genetic predisposition to autism and trigger X caused that potential to become fulfilled, then that reality is still worthy of respect and rights.

My video ‘Poison‘ caught some flack from people determined not to understand it. They said I was bashing the subjects. That I was taking them out of context. I was not. I did not.

However, someone else said I was taking them in the wrong spirit. That’s closer to the mark. That was intentional. Let me explain.

We cannot even agree on a definition of autism. Let alone decide how to approach treating ‘it’ (as a single entity). Hell, we haven’t even come close to knowing whether it is a single thing (doubtful). There are people on that video using some very strong, very ambiguous language. These are people who have made a point of going on TV, writing in newspapers, being interviewed on radio programs, speaking at conferences using this ambiguous language.

Not Mercury says, and I agree, that one of the things that is harmful and distasteful at the moment is people using language to imply something (and that something.s consequences) are well defined and well understood. They are not. As long as people keep giving people who are largely ignorant about autism the idea that they _are_ then ignorance flourishes amongst the people who need to understand autism the most – the people we want to accept us and our children. My child and my friends should not be demonised to further someone’s political points.

So one of the points (particularly to do with Boyd Haley, Brad Handley and Dr Geier) of the video was to hold up a mirror to the way in which ambiguous language can be used to further ignorance and bad feeling. Its become a Hollywood cliché but the saying that:

With great power comes great responsibility.

should be never more true when we consider using poorly chosen, stigmatising words to describe people. Kathleen’s petition regarding Boyd Haley’s poor choice of words is a case in point. I like to think my petition regarding Autism Speaks poor presentation and supporting justifications is also a case in point. Certainly the 800+ signatures Kathleen has received so far and the 500+ I have received bear testament that there are a lot of people out there who are very very tired of these dangerous words (Kristina calls them ‘fighting words‘) and the people who want to carry on using them to describe people.

This is not nit-picking or hair-splitting. Words have a power. Take the Pope’s recent little slip up. Did he mean to insult the nation of Islam? Almost certainly not. But he did. The reason he did is because words matter. The words chosen by Rick Rollens, Brad Handley and Boyd Haley are unbecoming of people who want to think of themselves as people concerned with helping autistic people. As I’m trying to illustrate, autism is more than a collection of medical comorbidities. Is there anyone who doesn’t think so? And if that’s true, as it surely is, then failing to use words that convey dignity, or at least using words that demean – regardless of intent – does the wider idea of advocacy no good at all. Our children and our friends are not helped by this state of affairs. We must do better.

32 Responses to “Shades Of Grey”

  1. Ballastexistenz September 19, 2006 at 13:36 #

    If we’re looking at words…

    “Co-morbidities” still implies that “disabling” things are separate from being autistic (whether or not they are), and the “co-” part implies that autism is a “morbidity,” a disease.

    There also seems to be an underlying assumption that disability=bad automatically, and that this should be distanced from ability=good. By relegating anything considered to be a “disability” (in what looks to be a pure medical/individual-model sense) to “co-morbid” status so that the “abilities” are unsullied by it.

    It’s far more likely that some aspects of autism considered disabling, are there precisely because of aspects of autism considered to be abilities. That in fact you can’t totally have one without the other, because of the way autism is shaped. And that you can’t split it in half down the middle of what you think is useful and what you think is harmful.

    Certainly there are plenty of things that are not necessarily “part of autism” that get claimed to be. But even they aren’t co-morbidities, that requires viewing autism as a disease. We neither call left-handedness a co-morbidity of anything else, nor say that left-handedness has co-morbidities, because we know that left-handedness is not a disease even in cases where it’s caused by the same things that cause things that are regarded as diseases. We don’t call Rett’s a co-morbidity of femaleness even though it almost exclusively happens in girls, because that would imply something about being female that most people don’t want to imply.

    Co-morbidity is not just a judgement of something’s detachment from something else, but is a value judgement of both things, on either side of it. If something is a co-morbidity of autism then autism is a disease or something otherwise bad.

    While I will not say that stomach problems are “part of autism,” I also will not call them a “co-morbidity of autism,” that implies both a specific kind of relationship that isn’t necessarily there, and it implies something bad about autism.

    And I will say that difficulties doing certain things can be part of autism. That means that by definition they’re not co-morbidities. But, also, they are not always as detachable from autistic people’s strengths as people are willing to think. I also refuse to chop my mind into little bits to please people who want to put value judgements on parts of it as “disabling co-morbidities” and other parts of it as “the good parts”, it’s like chopping my body in half vertically down the middle, the person doesn’t survive that kind of differentiation.

    As far as the causes go, they’re probably heterogenous, which means that none of your choices apply all the time, but some choices (including extremes) can apply some of the time.

    There are causes to some forms of autism that are totally known to be genetic.

    There are causes to some forms of autism that are totally known to be environmental (maternal rubella for example).

    The combination of those two is not “genetic with environmental triggers,” it’s “some pure genetic, some pure environmental”. Add more things and I’m sure you will get things between the two extremes, but it does not mean there are no examples of either extreme. Also, not all environmental so-called triggers are going to be negative things such as “injury” of some sort, I’m sure. Some of them could even involve environments that provide certain enhancements to certain areas of development (by someone or another’s definition of enhancement) such as factors in the womb etc.

    So, heterogenous doesn’t mean “between two extremes” unless you want to average everyone together which doesn’t seem like a great move in this regard.

    But, in terms of our rights and our aims, very little of this actually matters.

    I know several people who are autistic because they were rubella babies, and a few who appeared to become autistic after a very high fever in childhood. They are no more likely to want a cure than people who are autistic because of our genes.

    And once a person is autistic, then whether they can (or of course should, but also can) become non-autistic doesn’t necessarily depend on how they became autistic in the first place. Nor does how the person should be treated and regarded in general (and I don’t mean medically) change much if at all.

  2. Ballastexistenz September 19, 2006 at 13:37 #

    And, on the other hand, whether a person “has” autism or whether “autistic” describes a kind of person, does actually have a much larger effect on the ethics of these things, than any of the other things you regard as much less trivial and devote greater length to.

  3. Broken Link September 19, 2006 at 14:23 #

    Kev,
    There is no strong evidence that autistic children have more medical issues than other children. I think your perception is colored by reading e-mail lists where “everyone” agrees that their child has gut issues, for example. Children of parents without these issues are simply not posting to these fora.

    So, I don’t agree with calling any of these medical issues co-morbidities. I don’t agree that “autism is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc.” However, children (in general) do have gut issues, constipation, picky eating habits etc. at a rate higher than adults! And non-verbal children, or ones with reduced communication may not be able to tell their parents what hurts or bothers them. So, I’d be in favor of proper medical testing for children who seem to be in pain, have bowel problems of any kind, bloated stomachs, etc. Particularly so if they are autistic.

    My child is the picture of health and vigor. I personally know (not from lists) other parents with similarly healthy ASD children. On the other hand, I also personally know parents of typically developing children that can relate constipation horror stories (involving hospitalization, no less) that are the equal of anything on the autism lists.

  4. Kev September 19, 2006 at 15:09 #

    _”‘Co-morbidities’ still implies that ‘disabling’ things are separate from being autistic (whether or not they are), and the ‘co-‘ part implies that autism is a ‘morbidity,’ a disease.”_

    I know, I’m just stumped for a better set of words. I really totally agree with you and I certainly don’t want to use words that carry a differing set of preconceptions.

    _”There also seems to be an underlying assumption that disability=bad automatically, and that this should be distanced from ability=good.”_

    I don’t _think_ so. I’m saying ‘disability=bad’ _can_ be true if the circumstances dictate it. e.g. some disabilities may be life threatening. I’d certainly never say that that is a constant or a truth.

    _”It’s far more likely that some aspects of autism considered disabling, are there precisely because of aspects of autism considered to be abilities. That in fact you can’t totally have one without the other, because of the way autism is shaped.”_

    Interesting. I think this is what you were trying to get me to see before and I never got it properly. I’d love to see that idea expanded upon.

    _”Certainly there are plenty of things that are not necessarily “part of autism” that get claimed to be. But even they aren’t co-morbidities, that requires viewing autism as a disease.”_

    What I mean here is that (for example) epilepsy is often associated with autism statistically but it has no role to play in the wider area of someone’s autism. Or at least, that’s what I meant before I read your previous paragraph!

    _”Co-morbidity is not just a judgement of something’s detachment from something else, but is a value judgement of both things, on either side of it. If something is a co-morbidity of autism then autism is a disease or something otherwise bad.”_

    Well, the definitions I’ve come across say ‘disorder’ rather than ‘disease’ but I take your point.

    _”While I will not say that stomach problems are ‘part of autism,’ I also will not call them a ‘co-morbidity of autism,’ that implies both a specific kind of relationship that isn’t necessarily there, and it implies something bad about autism.”_

    I totally agree. Maybe ‘potentially statistically relevant’ might be a more appropriate term.

    _”There are causes to some forms of autism that are totally known to be genetic.”_

    You’re absolutely right, I was using ‘autism’ where I should’ve specified I was referring to the whole spectrum.

    _”…Some of them could even involve environments that provide certain enhancements to certain areas of development (by someone or another’s definition of enhancement) such as factors in the womb etc.”_

    Agreed – I recall reading a paper on the potential link between autism and the immune system where the author made a point of saying that whist research showed a strong indication of immune system involvement, there was no way of telling if that involvement was cause, result, positive or negative (in terms of impact).

    _”I know several people who are autistic because they were rubella babies, and a few who appeared to become autistic after a very high fever in childhood. They are no more likely to want a cure than people who are autistic because of our genes.”_

    Exactly! _How_ is not important.

    _”And, on the other hand, whether a person ‘has’ autism or whether ‘autistic’ describes a kind of person, does actually have a much larger effect on the ethics of these things, than any of the other things you regard as much less trivial and devote greater length to.”_

    Again, I agree. I would never suggest that such a distinction should be adopted, merely I was asking if such an idea would be harmful or positive.

    I’m still very new to all this in comparison to a lot of you and my ideas are nebulous and ever changing as I try and process new concepts/ideas etc. This whole post was about how words and semantics are important so really I’m trying out thoughts, I’m definitely not saying they’re right or even appropriate but if one can’t experiment on their blog then where can they? ;o)

    _”There is no strong evidence that autistic children have more medical issues than other children. I think your perception is colored by reading e-mail lists where ‘everyone’ agrees that their child has gut issues, for example. Children of parents without these issues are simply not posting to these fora.”_

    Yes, I agree that there’s no evidence for any more medical issues than other kids. My own is asthmatic – no gut issues at all. Never really did have. I’m not saying these things are _true_ – I’m _asking_ – is there an ethical place for using the word ‘autism’ to refer to the medical issues lots of parents on those fora describe? I personally don’t think so but is that simply dismissive?

    There’s so much I don’t know. What I _do_ know is that words carry a power that can colour the opinions of people not involved in the environment in question. How can we try and define or at least disarm the power of some words?

  5. Joseph September 19, 2006 at 15:27 #

    I’m also stuck with medicalized language, because that’s the discourse environment we’re inevitably in. Incidentally, I sometimes do refer to the “co-morbidities” of left-handedness and giftedness (e.g. myopia).

  6. M September 19, 2006 at 16:05 #

    In terms of the ‘everyone has gut problems’ I’d have to chime in and say most kids have gut problems at some point. Because children who are nonverbal, or not good at communicating their needs, don’t get this across, their gut problems may get out of hand before they’re dealt with. Major constipation is one of the top three reasons for children being admitted to hospital. “Constipation and bowel problems are the bread and butter of paediatrics”, to quote a doctor I’m related to 🙂

    To add to the ‘co-morbities’ – a lot of people don’t know that morbidity isn’t the same as mortality, and mentioning ‘co-morbity’ gives them the idea that their kid’s about to die.

  7. Jannalou September 19, 2006 at 16:13 #

    Words really are incredibly powerful. So are labels. I think people need to watch what they say and how they say it – not for the sake of “Political Correctness”, but for the sake of treating people like human beings.

  8. KChew September 19, 2006 at 16:18 #

    It seems to me that too much time is spent on worrrying and hand-wringing about the “causes of autism” and often without really looking at the person in front of us. I cannot endlessly replay the tape of “I did wrong” or “what went wrong” in Charlie’s babyhood and fetal development; I have to help the boy who is my son now.

  9. Kev September 19, 2006 at 16:29 #

    I see what you’re saying Kristina and I agree on a very localised level (my family environment). Certainly what Boyd Haley, Brad Handley et al say doesn’t impinge on the day to day life we have with Meg.

    However, the discourse on cause has (to me) widened into thinking that certain words/phrases/attitudes are OK to use when describing autistic people. On that global front I think we need to object loudly as it _will_ affect our kids futures directly.

  10. notmercury September 19, 2006 at 16:32 #

    Kev:“The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other.”

    Thank you for so eloquently crystallizing my thoughts Kev. Yes, that was the gist of what I was trying to say even if I went meandered off on a few tangents.

    Ballastexistenz: “I know several people who are autistic because they were rubella babies, and a few who appeared to become autistic after a very high fever in childhood. They are no more likely to want a cure than people who are autistic because of our genes.”

    I think that captures a point of view that many parents seem to be missing. I have no idea which factors were involved in my early development.

    Did my mother have a cold in the first trimester? Did she eat the right foods or take enough folic acid? Were there more solar flares or sunspots that year?

    Who cares. I am who I am and I have no desire to change that even if it were possible.

    Sure there are things I wish I could do better and there are some things I am not able to do at all but I wouldn’t trade my abilities for a different set of abilities.

    I know what it’s like to have parents who are constantly trying to change you and I can tell you it’s no fun. I never objected because I figured there must have been something wrong with me that they were trying so hard to fix me.

    For the record, I don’t have a diagnosis but I am different in many ways, just as we all are. Some might call that diversity.

  11. Kev September 19, 2006 at 16:42 #

    _”For the record, I don’t have a diagnosis but I am different in many ways, just as we all are. Some might call that diversity.”_

    And what is life if not diverse? Dull.

  12. Ballastexistenz September 19, 2006 at 20:25 #

    That’s the other thing: I undoubtedly have brain damage (from a few different sources) in addition to being autistic. This happened a long time ago. My brain has matured since then in the pattern that it’s going to mature given that this damage exists.

    While I would not go out and do that to anyone else, I’m also not going to sit here and try to undo history. I’m not going to try to “fix” my brain to the mythical state it would be now if this damage hadn’t happened however many years ago, and if however many years of brain maturation hadn’t happened since then. That’s not even possible, and I am who I am today in part because of these events.

    I know plenty of people who would not give up cerebral palsy, which is usually viewed as wholly negative and always caused by brain damage.

    People come up with all kinds of bizarre twisted reasons (fears, evasions of responsibility, etc) why people might feel this way about things that are “clearly” uniformly awful and uniformly in need of reversal, but never seem to understand that these things become part of a person. Not all of a person, not the defining characteristic of a person, but part of a person.

    And autism is more central to who a person is (not personality, that’s not what I mean, it goes deeper than that) than many things that others don’t want to be cured of.

    The trouble with this is, as someone said in a documentary I was watching, the way the medical profession has a total hold over perception of disability means that there’s no room in that view of the world to have a positive view of being disabled, that’s not an option, it’s inherently negative, inherently a bad thing, etc. (That’s a paraphrase. She was much more eloquent and passionate about it. She, by the way, had a spinal cord injury.)

    That doesn’t mean you go seeking it out, but people who use the fact that people don’t seek out (most) disability as if it is a good thing, as proof that all this stuff about it being a good or at least neutral thing is nonsense and our “real” views are that it’s bad and we’re just trying to cover them up. That’s not true. Reality is more complicated and much harder to put into words.

    I hope I’ve made some degree of sense here, but there’s a much wider thing than autism involved in this.

  13. David N. Andrews MEd (Dec2006) September 19, 2006 at 21:41 #

    Amanda…

    “The trouble with this is, as someone said in a documentary I was watching, the way the medical profession has a total hold over perception of disability means that there’s no room in that view of the world to have a positive view of being disabled, that’s not an option, it’s inherently negative, inherently a bad thing, etc.”

    Yes, this is absolutely accurate. Much of it comes from other professionals being too willing to capitulate to medical practitioners, and to make themselves – as professionals – subservient to them. And medicine has no room for alternative viewpoints.

    “I hope I’ve made some degree of sense here, but there’s a much wider thing than autism involved in this.”

    You have indeed. You are right.

  14. Jannalou September 20, 2006 at 02:20 #

    I hope I’ve made some degree of sense here, but there’s a much wider thing than autism involved in this.

    Absolutely.

    I’m of course still sorting myself out so far as my own disabilities (the labels, at least) are concerned. I haven’t been able to see a lot of good stuff about the depression yet, but I do see plenty of good about the ADHD. I expect my life is more difficult than that of non-ADHDers, but I think I am often much more easily entertained. I don’t get bored so long as I have something to think about (which is dang near all the time).

    I was involved (or at least interested) in this advocacy long before I was dx’d ADHD. I’m not in this just for myself, but I see the long-range implications for people like me (those with a “less severe” kind of disability/disorder than those with autism), should the eradicators get their way.

    I don’t want a world without difficulty, though a little less would be nice. But I don’t think it’s possible to appreciate what we have if we don’t also experience doing without.

  15. Hyperion September 20, 2006 at 08:22 #

    I agree with Jannalou (although that may have more to do with sharing the ADHD-ness).

    One of the things that really hits me when seeing the whole autism “debate,” if you can call it that, is that I can’t help but think that the ADHD community would likely look just the same were it not for a lucky asthma attack and an observant teacher back in 1937. One of the things that the advent of treatment (but not a cure) for ADHD did was solidify exactly how much of the behavior was neurological in nature (although dumbshit scientologists still dispute that to this day), but it also provided an opportunity for those who were medicated to catch a glimpse of life with and without the disorder. It allowed them (us, I guess) to act as bilingual translators, helping those with the condition understand neurotypicals, but also allowed them to explain to neurotypicals what the condition was like because they were actually able to compare it to normal thought processes. It also led to a far deeper understanding of the disorder (for instance, the fact that attention and hyperactivity are only the outer manifestations of deeper executive dysfunctions) that might not have been possibly purely from an outside-looking-in perspective that existed beforehand.

    It should be understood that ADHD treatment does not remove the essential “personality” of the individual, it only allows the individual the ability to comprehend the neurotypical world, and to function normally if they choose to do so. In that regard, it is less a “brave new world” chemical engineering as merely pulling back the curtains and allowing one to see through the divide.

    This brings up the completely useless hypothetical question, though: what would happen if there were a “treatment” for autism, potentially pharmaceutical, that would not be permanent, and would not remove the essential “personality” of the individual, but merely allow them to see the world through neurotypical eyes and act as though they were neurotypical? As in, it allowed the person to speak the thoughts in their head flawlessly through their mouths, but those thoughts were the same as they had always been; removed the sensory overload, although the senses themselves were unchanged, merely controllable and comprehensible; allowed a person to have conscious control over stimming, although it would still have the same effect should they feel that they needed to. The actual thought processes would stay the same, only the outward manifestations, the autistic equivalent of inattention and hyperactivity, would be altered in the manner I described above.

    Would this change the debate? I’m not asking “would you medicate,” but rather the deeper question of how it might change one’s view of the condition, or perhaps how it might hypothetically change society’s view of the condition.

    I find the question interesting, although I fear it may be misinterpreted.

  16. Joseph September 20, 2006 at 15:23 #

    It should be understood that ADHD treatment does not remove the essential “personality” of the individual, it only allows the individual the ability to comprehend the neurotypical world, and to function normally if they choose to do so.

    I doubt Ritalin makes a person with ADHD become temporarily NT. Ritalin is a brain stimulant, hence any positive effects on attentiveness probably come from that. NTs take Ritalin when they want to focus too. I don’t think it turns them into non-NTs.

  17. Jannalou September 20, 2006 at 15:46 #

    I doubt Ritalin makes a person with ADHD become temporarily NT.

    I was going to say this myself.

    I’m not NT when I’m on my meds any more than I’m NT when I’m off them. My brain still functions differently from an NT. All the meds do is make it easier to focus. That’s not making my brain work the same way as an NT brain. NT brains don’t make the kinds of leaps in logic that I do. NT brains don’t follow the kinds of tangents that I do.

    What I was getting at was that, if “they” succeed in eliminating ASD from humanity, then I strongly suspect that something like ADHD would be next. And that is not acceptable (and should not be acceptable).

    Now… I need to go shower and get ready to go see the doctor about the new meds I’m going to be trying. Not to make me NT, not to make me non-ADHD, not really even to make me non-depressed (if you need to take meds to keep from being depressed, you aren’t cured). Just to make it so I can deal with stress better and so I can function better. (And by ‘better’ I mean without having a meltdown or feeling like giving up whenever anything goes wrong.)

    Ms Clark: You’re right, depression definitely makes one more pragmatic… what most would call cynical. Though it’d be nice to be able to see the glass as half-full once in a while…

  18. zilari September 20, 2006 at 17:06 #

    Ms. Clark: I personally tend toward the opposite of depression, however, this does not make me any less realistic. I DO love life, however, this does not in any way correspond to a grandiose view of myself or a sense that “everyone must love me”. I am perfectly able to see obstacles and respond to them. Not saying you can’t appreciate your own depressive tendencies for the perspective they give you — of course you can, and that’s very respectable. But I did think it was important to defend the existence of the realistic-yet-exuberant.

    Being positive / happy doesn’t mean ignoring things that could go wrong or thinking more highly of onesself than is merited. It might for some people, but it certainly doesn’t for everyone. You don’t need to assume everything is going to be horrible in order to avoid setting yourself up for disappointment; in my case, I usually go into any project trying to realistically imagine and prepare for any possible outcome. This means preparing for success AND for failure, and determining how much effort is worthwhile. Remember also that holding onto a gloomy attitude that is NOT at the same time realistic can also act as a set of blinders, figuratively speaking, that can prevent a person from seeing how to make things turn out better and perceiving positive options and paths. You sound like you’re realistic. I am realistic as well. But I get the impression that we’d both be realistic regardless of intrinsic temperament. 🙂 People on the spectrum (from my observations) do tend to engage in less “filtering” of events and surroundings than other people, which probably means we’re less likely to be fooled by deceptive false causal relationships and temporal patterns.

  19. Ballastexistenz September 20, 2006 at 19:30 #

    Um, autism is deeper than personality. Changing autism doesn’t change personality, it changes something far more fundamental, and it would indeed remove certain abilities (that seem to exist in autistic people and not in non-autistic people) to remove autism, for whatever that’s worth.

  20. Gabesmom September 20, 2006 at 19:39 #

    Amanda, I certainly understand your dislike for the term co-morbidities, but it’s very challenging to have a conversation with someone who continually brings up the fact that their child is in pain and uncomfortable from one or more medical condition that is seemingly related to the fact that they are autistic. I sometimes make the parallel that children with Down Syndrome often have heart conditions, but those heart conditions do not define Down Syndrome, because one can have Down Syndrome without having a heart condition and the fact that an affected child has treatment for a heart condition does not eliminate the Down Syndrome. Still, people might use the fact that Down Syndrome kids often have health problems to justify aborting a fetus. I’ve seen this argument used many times in relation to autistic kids- the fact that they are seemingly unhealthy is attributed to their being autistic, and therefore if we were to eliminate the autism, we would be eliminating pain and suffering. Who can argue with eliminating pain and suffering?

    The only way I know how to combat this argument it is to point out 1) my son has no medical conditions 2) autism is more than a combination of deficits. I think I try to focus on the perceived positives that many autistic people share simply because that seems to be the only way people will even begin to look past what they see as a completely disabling condition. I’ve had discussions before regarding the value judgments that we assign to certain skills or characteristics, but ultimately what people in the non-autistic world seem to regard as positive are those things that will be “useful” or help people to become “independent” and “productive” citizens. The notion of the autistic brain as being “unhealthy” came up recently, and I honestly do not know the best way to respond to such an assertion. If your child can’t speak or if he can’t speak well, if he has tantrums over seemingly insignificant things, and if he has no interest in other children and people he does not know very well, then these are certainly symptoms of an unhealthy mind to people who value speech and socialization. If you say that all of us have differences, and that we all would appear to have unhealthy minds given the proper environment and expectations, it is viewed as trivializing the nature of autism- and maybe those types of comparisons do trivialize the differences. I just don’t know how to defend my son’s right to be himself and not to be labeled as diseased or defective without such comparisons. I always wind up debating the assumption that our kids probably won’t have “normal” lives because they are autistic, and can’t I understand how tragic and devastating this all is, and why on earth wouldn’t I want to cure autism if it would so greatly improve my son’s life? Then again, people usually view my rejection of the cure stance as a result of the fact that my son is perceived as high functioning, based upon the fact that he is potty trained, has some language, and has some advanced academic skills. Who am I to try to deny a cure to children who are so obviously worse off than my own child? My kid doesn’t bang his head after all (well, not anymore) and he doesn’t smear his feces, so I guess I don’t have a right to say anything and maybe I ought to just shut the hell up.

  21. Bonnie Ventura September 20, 2006 at 22:01 #

    Gabesmom wrote:

    I’ve seen this argument used many times in relation to autistic kids- the fact that they are seemingly unhealthy is attributed to their being autistic, and therefore if we were to eliminate the autism, we would be eliminating pain and suffering. Who can argue with eliminating pain and suffering?

    This is a classic argument for eugenics, and it can be used to advocate eliminating any group of people. After all, if we had no blacks, we wouldn’t have to worry about sickle cell anemia. If we got rid of Jews, no more babies would have to suffer with Tay-Sachs disease. Kill off all the white folks, and that’s the end of cystic fibrosis. Et cetera. (Yes, I know that these conditions are not entirely exclusive to these ethnic groups, but all the medical conditions that have been associated with autism, whether rightly or wrongly, are not exclusive to autism either.)

    And Gabesmom, I think you are doing a fine job of defending human diversity on your blog. Keep up the good work!

  22. Ms. Clark September 20, 2006 at 23:09 #

    The thing about typical positivism is that it has been shown to act as blinkers. This apparently is adaptive because it keeps people in the mode of trying to do things. Zilari, you may have it all figured out, how to see things properly. My own ASD child has a rosey view of life, but doesn’t have anything like grandiose plans. I have friends though who do tend toward hypomania, and that is a notch up from the normal state of positivity that tells (all typical) people that they are above average on any measurement.

    Not to pick a fight, but just because you claim that you can see problems well and avoid them doesn’t mean that you can. 🙂

    My friends who keep standing on the train tracks while the train comes barrelling down on them always have a reason for why it didn’t work out, and it’s rarely that they made a dumb mistake, it’s that life is not fair or something.

    True depression is not fun, though. It kills people.

    I want to see a cure for Narcissisitic Personality Disorder and Antisocial Personality Disorder and “me first” and “my kind is superior to yours” long before I want to see a cure for ADHD or Downs.

    The people in power think they are the best kind, and that everyone should want to be like them. That’s eugenics. Cure the people with the eugenical attitudes first.

    Some people (parents with privilege, usually) have this weird view that if they could only get rid of autism then the world would be more perfect. What they want more than anything is to run back the clock and not be stuck with a “defective child.” So they start a crusade saying that they don’t want any other parents to suffer as they have. It’s the next best thing for them, I guess.

    Once upon a time you could dump a kid and “get on with your life.” That’s much harder for anyone to do these days, wealthy parents are expected to hang on to their defective kids and deal with them 24/7. So they wish their children dead and wish that they had never been born, etc. See: Autism Speaks’ “Autism Every Day” video and the Vanity Fair (perfect) article “Autism’s Angels”.

    So much of the “outrageous” behaviors of autistic kids come out of the push, push, push, push attitude of Western parents. Forced march, double time you slacker!!! No down-time for you you little parasite!! You will become self supporting or else.

    Gives me a stomach ache just thinking about it. I never treated my child that way, maybe that’s why we didn’t have all the gut problems (which are known to be caused by stress… !!) Some kids don’t belong in noisy stressful situations, but lots of parents won’t have it, they force their kids into those situations and then blame the kids!

  23. Joseph September 21, 2006 at 00:36 #

    Negativity is not always realistic. Many negative beliefs can be self-defeating and non-rational. Take, for example, the beliefs of someone who is a hypocondriac. Total positivity can be non-rational too. I’m all for realistic non-defeatist expectations.

  24. clone3g September 21, 2006 at 00:38 #

    Ms. Clark said: The people in power think they are the best kind, and that everyone should want to be like them. That’s eugenics.

    Yep.

  25. zilari September 21, 2006 at 02:17 #

    Joseph: Exactly, the hypochondriac is a good example. Hooray for realistic non-defeatism!

  26. GMAC September 21, 2006 at 14:52 #

    Ms. Clark said:
    Some kids don’t belong in noisy stressful situations, but lots of parents won’t have it, they force their kids into those situations and then blame the kids!
    So true. I’ve experienced this firsthand, what with having all those other kids of mine and their blasted extracurricular activities. Let me tell you, a noisy High School gym filled with parents and teenagers all yelling and carrying on is not the best place for my son. We simply do not take my youngest to these types of activities.
    However, there are some situations that have oddly resolved themselves over time. I have a 17 year old drummer. There was a time not so very long ago that he was allowed to practice only when my youngest son was out of the house. Otherwise, we had to endure screams and whatnot. So we adapted. Two years later, my youngest son is drawn to the drums when older son plays, and he wants to play them, too. Of course, we let him, and he has a lot of fun with his big brother.
    On the issue of the word “co-morbid”–how about the term “co-existent” instead?

  27. Ballastexistenz September 22, 2006 at 04:30 #

    I doubt there needs to be a new word for “co-morbid”. Just using standard language, like “other conditions” or whatever should cover it.

  28. David N. Andrews MEd (Dec2006) September 22, 2006 at 06:07 #

    Or maybe “conditions likely to occur alongside…”?

  29. Ballastexistenz September 22, 2006 at 22:53 #

    Sometimes they’re not even likely to do that, even when they’re advertised as such, though.

  30. David N. Andrews MEd (Dec 2006) September 23, 2006 at 02:24 #

    True….

  31. David N. Andrews MEd (Dec 2006) September 23, 2006 at 02:27 #

    Ms. Clark said: The people in power think they are the best kind, and that everyone should want to be like them. That’s eugenics.

    And I agree too…

  32. Lena October 18, 2006 at 06:10 #

    What about older fathers much more likely to have an autistic child? Does anyone think people should try to complete their families before 40? And maybe freeze semen in their 20’s or 30’s in case they want to father later?

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