Reconsidering the Nature of Autism

8 Apr

Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.

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30 Responses to “Reconsidering the Nature of Autism”

  1. Anne April 8, 2011 at 15:52 #

    Reading Dan Olmsted and Mark Blaxill’s words saddens me deeply. It’s one thing (and bad enough) coming from Steven Pinker, but I would – and did – expect Dan and Mark to have a greater understanding. Dehumanizing people is wrong and dangerous.

  2. Julian Frost April 8, 2011 at 16:56 #

    W.R.T the “first autistics ever” myth, I’ve argued in my blog that both Isaac Newton and William Bligh were probably high functioning autistics. The idea that because Autism was not recognised prior to Kanner and Asperger it didn’t exist before then is preposterous.

  3. Ashmire April 8, 2011 at 21:07 #

    Thanks for posting this up. I came across the original last night and found it a huge relief. So much of what comes up in the name of Autism Awareness Month basically just makes me feel there is no hope for me—so much utter hatred, fear, and complete refusal to even try to understand, by people who don’t even know they’re bigots—and no one else seems to know it either. What do you do when the fear of what people are saying renders you too speechless to counter it?

  4. passionlessDrone April 8, 2011 at 21:35 #

    Hello friends –

    I come from a place where this language doesn’t bother me at all. During my son’s initial descent into autism, his behavior was more consistent with an animal than anything else, and an untrainable, and occassionally self mutilating and dangerous animal at that.

    He stopped speaking, stopped looking at us, stopped imitating us, stopped signing, and showed no interest in any humans.

    The only communication that could be discerned was if he attacked you, another child, himself, or animal. There was a several month period where he made absolutely no noises. For a time, he would laugh hysterically, but only when alone in the darkness of his room.

    Autism took a happy toddler and horribly changed him. These are the facts of his second to third year of life. What we would have given such that our biggest concern were the hurtfull words people might be thinking or saying.

    We were not witness to the evolution of a ‘disability and a difference’. It was a total fucking disaster. Autism has given my son absolutely nothing of value, and taken a great, great deal from him. All of the beautiful things about my son are just as easily found in children without autism.

    Would it be OK if to describe these facts without the terminology of ‘autism’? Would this somehow be less ‘dehumanizing’? Perhaps we could find a place where when someone says something about a child with condition X, we do not necessarily jump to believe they are talking about all children with condition X. Do we need condition Y?

    Instead of reconsidering the nature of autism, perhaps we all need to recognize that our experiences are singular, and we extrapolate them personally across the wide swath of a very nebulous and far ranging spectrum of behaviors at great risk of misunderstandings.

    – pD

    • Sullivan April 11, 2011 at 06:25 #

      pD–

      sorry for the delay in responding. First let me say, I’m sorry for what you and your family have gone through. Just in case it isn’t clear–I wish there was a way to avoid regressions. I also don’t think that words are the biggest concern. I do find that dehumanizing language is a major concern, for reasons I will go into below. Acknowledging that a person is disabled is not dehumanizing. Acknowledging that a disability is often acquired rather than congenital is not dehumanizing. It’s one thing to say, “Autism is a disability” or “autism poses great challenges”. But to say “autism…steals the soul from a child”, how could anyone argue that is dehumanizing? Autism impairs functions that are “distinctly human”, couldn’t be clearer that this is dehumanizing.

      These words are more than “hurtful”. They are dehumanizing. They instill in the reader the thought that autistics are less than human. That autistics are missing something “distinctly human”. It isn’t limited to autism. It isn’t limited to disability. I just find it wrong to characterize people as somehow less than human.

      On a selfish note, I rely upon society to assist in supporting my child. I don’t see that happening for a person who “less than human”.

  5. daedalus2u April 8, 2011 at 22:39 #

    “What we’ve got here is a failure to communicate.”

    All communication is two way. You need a transmitter and a receiver. A speaker and a listener. A writer and a reader. A lover and a lovee.

    What Jenny McCarthy, Jerry Kartzinel, Mark Blaxill, Dan Olmstead, Andrew Wakefield, John Best (especially John Best), and the other curebies don’t realize is that their inability to perceive the “soul” of an autistic person is due to the curbie deficit, not because the autistic person doesn’t have a soul.

    It is xenophobia writ large. Those who feel that autistic people have no soul are simply unable to perceive the soul that they do have. The curbies have such a narrow, constricted and puny idea of what makes up a human being that they can’t see when one is right in front of them.

    All recognition is pattern recognition. You have to be able to match what you are trying to perceive to an internal neuronal structure that can recognize it. When you can’t match what you are trying to perceive to an internal neuronal structure, you can’t recognize it and you can’t even tell that you can’t see it.

    http://daedalus2u.blogspot.com/2010/03/physiology-behind-xenophobia.html

    The curbies can’t perceive autistic individuals to be human beings, to be actual real people with feelings, wants, needs and the human capacities to feel, to love and to be loved. This is the curbie deficit, and I pity them for it, even as I fight to prevent them from harming others because of their deficit and their delusional attempts to externalize the fault onto the autistic person, onto vaccines, onto big pharma, onto mercury, onto neurodiversity. Anything to avoid understanding where the curebie inability to perceive autistic individuals as human beings comes from.

  6. Nightstorm April 9, 2011 at 00:28 #

    Funny how this is about pain of words when I did something similar myself

    http://prismsong.blogspot.com/2011/04/april-2-words-can-hurt-you.html

    It’s funny you mention xenophobia Daedalus. Reading this and Drone’s mind-numbing dehumanization of his child. It makes me think of the metaphors I use when describing autism to other folks. I often use the metaphor of sapien non-humans (my dragon people for instance you can read them here http://drakkhanistories.blogspot.com/) to parallel the experience of being an autist in a non-autistic word. It’s easier for people to justify the abuse, the “at home” mad-science the so-called treatments. It’s no different than 5th century Ireland. We were changelings then and were still changelings now.

    Writing the discrimination between fantastic sentient beings and humans, is funny how much it echoes. Humans assume stereotypes as facts (IE all satyrs are boozers and rapists) they make assumptions based on emotions (IE the idea that we should hide our children away from nagas because they will eat them) we speak for them without say and so forth. It’s funny while writing this I was allegorizing my own experiences as an activist.

    Which brings an amused thought. Even if were not human, would our value be erased? Would our sentience be judged? Would be become a myth too?

    Are autists humans or are they changelings switched out of their native faerie lands into this weird human word.

    Funny thought huh?

  7. Autism and Oughtisms April 9, 2011 at 00:52 #

    Very interesting and important post.

    I hadn’t seen that quote taken from the start of Jenny’s book before. What a horrendous, short-sighted and misleading statement about autistic children.

    When you’ve just discovered that your child has autism, and you’re still learning about what that means – especially prior to being introduced to any therapies to help your child – you are vulnerable, scared and the idea that your child has been “stolen” from you, might sound insightful. What parents need at that time is support and information. Not someone feeding the fears and confusion. Definitely not someone telling them their life is getting the marrow sucked out of it! (Even though it might feel that way in the early days when you’re adjusting to life with an autistic child).

    I did got through hell with my autistic son – and it still is incredibly hard some days – but I never saw him as soulless. What a horrible and pointless attitude. I’m all for people speaking their minds and sharing their experiences, but if in your mind your child is “without humanity”, then the problem is with you and not your child! At that point it’s time to do some of your own soul-searching!

  8. sharon April 9, 2011 at 01:12 #

    @daedalus2u, I really like your comment.

    @passionlessdrone I am genuinely sorry to hear how painful the process of coming to terms with your sons Autism has been for you. Don’t write off the possibility that Autism may have given him something of value just yet. I say this based on the multitude of Autistic adults who would now, after very difficult childhoods, say they have found value in their Autism. I don’t know how old your son is, but I hazard a guess he’s still got a long way to go?

  9. daedalus2u April 9, 2011 at 02:10 #

    Sharon, thanks, I think my blog post on xenophobia is pretty close to what is happening. Usually xenophobia is triggered by ethnic and language differences. Xenophobia has to be a learned behavior, learned in the sense that the identity of the objects of xenophobia can’t be coded by DNA. Children are not going to be xenophobic of someone like those they grow up with unless there is specific instruction in being a bigot. That is why mainstreaming is so important, not just for the NDs, but for the NTs too. The only way that NTs can avoid being bigots and curebies is to be exposed to NDs during their formative years.

    It is possible for NTs to become non-curbies and even non-bigots. The problem is that many don’t want to. Too much of their self-identity is tied up with being different than “the other” that they hate. This is why the bigots, the homophobes, the racists, the fascists all want segregation. Only by segregating their children away from “the other” can the xenophobia be perpetuated in the next generation.

    Nightstorm, I don’t think they have the capacity to value sentience that they cannot recognize and even to impute sentience or any emotive or cognitive or human-like capacity to “the other”. In their eyes they are not hating a human, they are unable to appreciate that the object of their hatred is a human or has any human-like characteristics that are of value.

  10. sharon April 9, 2011 at 04:34 #

    @daedalus2u, I suspect the main barrier to embracing your perspective is the lack of acknowldgement of the pain suffered. For many on the spectrum, at all levels of functioning, there are inherent difficulties. These struggles can cause stress for both the person with Autism, and those of us who love and care for them. A narrative that can acknowledge this whilst simultaneously arguing for acceptance and appreciation of the special perspective on those on the spectrum seems best to me. I think we need to be mindful to avoid invalidating people’s pain. Even if we struggle to see justification in it. Of course this differs from supporting people to stay stuck in self pity.

  11. Nightstorm April 9, 2011 at 15:15 #

    Quote “It is possible for NTs to become non-curbies and even non-bigots. The problem is that many don’t want to. Too much of their self-identity is tied up with being different than “the other” that they hate.”

    I disagree. Many NT’s do not fall into the self-feeding fear of the “Other”, they have activtly embraced the other and become an ally. Good example is our “token” NT in the ASAN chapter in Columbus. She does her best to combat the hate and fear perpetuated by the media and works with us and sees us as equals. Another good example are students that I work with. The NT peers help and care for their autistic friends, it’s amazing to see such respect from them.

    This is why education is so damn important.

  12. Nightstorm April 9, 2011 at 15:16 #

    Quote “It is possible for NTs to become non-curbies and even non-bigots. The problem is that many don’t want to. Too much of their self-identity is tied up with being different than “the other” that they hate.”

    I disagree. Many NT’s do not fall into the self-feeding fear of the “Other”, they have actively embraced the other and become an ally. Good example is our “token” NT in the ASAN chapter in Columbus. She does her best to combat the hate and fear perpetuated by the media and works with us and sees us as equals. Another good example are students that I work with. The NT peers help and care for their autistic friends, it’s amazing to see such respect from them.

    This is why education is so damn important.

  13. Saraquill April 10, 2011 at 02:28 #

    Sullivan and Kev clearly have more restraint than I do. My first and strongest impulse would be to give Blaxill some indecent hand gestures before beating him over the head with my diplomas and resume.

    As for Kev’s response video, is there a reason for the mechanical voices?

  14. passionlessDrone April 10, 2011 at 05:33 #

    Hi Sharon –

    I think we need to be mindful to avoid invalidating people’s pain. Even if we struggle to see justification in it.

    Very insightful.

    – pD

  15. Kev April 10, 2011 at 20:22 #

    The mechanical voices are the only way I could get a lot of voices together in a relatively short period of time :)

  16. passionlessDrone April 11, 2011 at 16:59 #

    Hi Sullivan –

    Acknowledging that a person is disabled is not dehumanizing. Acknowledging that a disability is often acquired rather than congenital is not dehumanizing.

    OK.

    Autism impairs functions that are distinctly human, couldn’t be clearer that this is dehumanizing.

    This is a difficult discussion, I don’t want to unnecessarily antagonize anyone, and it can quickly descend into unresolvable semantics (i.e., define a ‘soul’). I guess my thought are that autism does ‘impair functions that are distinctly human’, at least in some instances. From my experience I’d say this was the case for us, at least for a few years. How do we decouple my experience from everyones conception of autism? I was serious when I wondered if we need another label, condition Y.

    That autistics are missing something distinctly human.

    I believe this is the fulcrum of why we feel differently about Mr. Kartizinel’s word choice. I see my son as a human apart from and despite his autism; I realize that lots of people feel differently, sometimes with great passion.

    I just find it wrong to characterize people as somehow less than human.

    OK. I guess my take was that this isn’t what I necessarily took from the piece, it was more like, ‘this is what autism does to a person’ (or can do to some persons). Again, I think difficult to overcome mixtures of personal beliefs, and experiences are the source of this. It certainly had a of resonance to my experiences, and of many people I know.

    On a selfish note, I rely upon society to assist in supporting my child. I don’t see that happening for a person who less than human.

    Sadly, I don’t think you (or I) can count on society at large for much in that arena no matter who writes what in a book; I’m extremely pessimistic on the issue as a whole, which drives a lot of my other decisions. I don’t like it, but I do think it is the pragmatic viewpoint. (?)

    Interestingly, I’m much more worried that folks like ASAN will convince the public at large that autism isn’t something that needs fixing; just ‘supports’ and ‘services’. I’m not arguing that supports are bad per se, just that the argument that those should be the only avenues to be researched is wrong headed.

    Schizophrenia is a terrible disorder. I doubt very many people would consider it a ‘difference’, (maybe not(?)). From a structural and neurochemical perspective, it has a lot of similarities to autism. Because it primarily strikes in adolescence or adult hood, I’d say that the requests for ‘services’ and ‘supports’ for schizophrenia are far, far less prevalant than for autism. (?) [When is schizophrenia awareness month?] Could you imagine a group of schizophrenics attempting to manipulate policy such that pharmaceutical treatment research was abandonded with the argument that what, instead, should happen, is that society should provide the ‘supports’ and ‘services’ necessary for them to function?

    If ASAN is successful, we could get the worst of both worlds; reduced funding for causation and treatment research, and less funding for support. The economic realities, and inherent dumbness of humans isn’t going to allow for societal level changes required to allocate resources to support our children over their lifetimes; it just isn’t going to happen. If we succeed in convincing people that autism isn’t something to be cured, the next thought process is going to be, ‘Well, then why do we need to provide services for it?’. Seriously.

    This is an especially dangerous path to follow when the frequent corresponding argument is that there is no true increase in autism, because it becomes very easy to make the logical jump that not only is autism not something to be cured (according to people with autism themselves!) but if it has always been with us at these rates, and ‘services’ and ‘supports’ weren’t available in the past decades, everything seemed to work itself out, and therefore, why should we now start worrying about all of these exceedingly expensive options for something that doesn’t need fixing, and never seemed to cause any problems for the preceeding centuries? I’m, not making this case, just pointing out that there are lots of voters out there who aren’t going to have time for the nuance of our world, and subtleties of long term realities don’t appear to be especially important these days if the upshot is not reducing the marginal tax rate by 2%.

    Think about it like this, a very frequent topic on this blog is disease, and the very real, deadly effects it has had on humans for all history. Again, and again, and again the statistic that one in a thousand children with measles suffered long term changes; i.e., measles isn’t a joke. OK. Today we have statistical models to tell us this at a fine level of detail, but we didn’t really need them to understand that disease was bad, and even survivors were sometimes changed for forever. There is no corresponding historical narrative on autism, for one reason or another. History tells us nothing about what happens if such services are not provided, and (some) people with autism don’t even think researching causation is important. Within this framework, consider Joe SixPack; what is to keep him from thinking that services, paid for from his taxes, are unncessary?

    Now I’m depressed. Hah.

    – pD

    • Sullivan April 11, 2011 at 19:37 #

      pD–

      “just pointing out that there are lots of voters out there who aren’t going to have time for the nuance of our world,”

      I think the fact that many autism “advocates” don’t have the time for nuance and are quite willing to dehumanize and denigrate the very people they are supposedly advocating for makes the above statement quite clear.

      “what is to keep him from thinking that services, paid for from his taxes, are unncessary?”

      I see the level of support being much less if autistics are considered “dehumanized”. I don’t see the average voter caring to provide even the low levels of services and supports currently provided, especially if he is informed *by self-styled autism advocates* that autistics are lacking something human. I see them asking, why not merely warehouse autistics as long as they are somehow lacking something human?

      One point needs to be made here–I am not a member of ASAN. I will discuss things from my own perspective. I frankly think a lot of time and energy is wasted on the cure discussion–on both sides. There isn’t a cure. There isn’t one on the books. There isn’t one in clinical trials. There are some very important ethical questions involved in a potential cure, but even self-styled autism advocates avoid the nuance and go for the pity-politics and dehumanizing language.

      I also won’t get into the “it’s either this or that” argument. It isn’t “either cure or supports research”. There can, and should, be research both into treatment and into support. But the fact is clear–there is very little money put into support. VERY little.

      Let’s consider the analogy of schizophrenia, as long as this have been brought up:

      Could you imagine a group of schizophrenics attempting to manipulate policy such that pharmaceutical treatment research was abandonded with the argument that what, instead, should happen, is that society should provide the ‘supports’ and ‘services’ necessary for them to function?

      Again–I will speak for myself. Where have I ever said that treatment research should be abandoned? I haven’t. Also, pharmaceutical treatments for schizophrenia are not cures. Now, consider this: is there a cure for schizophrenia? How long has schizophrenia been known? Should we put 100% of the money for schizophrenia research into a cure? Should we put 100% of money for schizophrenia into research and none into support? By analogy, what is the likelihood that research will come out with a cure for adult autistics in the near future? I would posit the chances are quite low. Adults, as what is likely the largest segment of the autistic population, deserve representation in research.

      “The economic realities, and inherent dumbness of humans isn’t going to allow for societal level changes required to allocate resources to support our children over their lifetimes; it just isn’t going to happen. “

      I’ve seen great societal changes only in my lifetime. Again I must stress: I don’t see this as an either-or proposition. But I will not give up on the possibility of improving the life of my child through societal changes. I certainly won’t assist those who are actively working against the dignity of my child.

  17. sharon April 11, 2011 at 23:45 #

    @passionlessdrone, Sullivan makes good points about research and supports. I just want to add to your point about rates of Autism and the idea that if people believe it has always been around without supports there is an argument going forward not to provide them. My thinking on this is that the ‘supports’ that once existed for people on the spectrum were institutions. The last few decades have seen an international movement of deinstitutionalisation. This created it’s own challenges, particularly the lack of community assistance to help those who struggle to manage day to day in society. So it’s not that there was no need previously because the numbers of people with ASD were so low, it’s just that philosophically we lumped all those with disability and marked difference into the same category and locked them away.

  18. McD April 14, 2011 at 10:18 #

    I am totally with Todd when he starts out on his essay.

    I just wasted a precious day’s work writing a letter to the editor over some stupid journalist’s take on autism. The article, written for a magazine for “thinking New Zealand” was subtitled “when love is a one-way street”. Apparently, since autistic children don’t communicate love and other emotions, they don’t actually feel them at all. North&South don’t have an online version, but a blurb on the (disproportionately influential – it is in most airline seat pockets) magazine is here:

    http://auckland.scoop.co.nz/2011/03/north-south-april-issue/

    But then Todd loses the plot a wee bit. He is fortunate to have a boy he describes as ‘high-functioning’. From there he goes on to state that autistics “Like everybody else, they are entitled to any obsessions and behaviors that won’t hurt themselves or others.” and cautions against something he calls ‘behavior modification’ (is this the same thing as applied behavior analysis? who knows? you can make up your own definition and still agree with Todd)

    It is a wonderful statement in theory. I wish it were so. I wish I could spend days on end pursuing my obsessions, very real, very urgent things I really need to focus on. But I have to earn money to feed my children (not to mention pay for ABA!). As a child and a teen, I wish people would have just left me alone rocking away to my day-dreams. I would still be rocking in the dark now, most likely. I wish I never had to talk to people, especially on the phone. And what idiot invented Skype! Combining the worst of phone-phobia with must-look-person-in-the-eyes technology.

    The cold hard reality is that autistics, like everybody else, have to learn how to get on in society. Modern behavior therapies do not attempt to delete autistic behavior altogeher, but simply teach when it is ok to engage in certain types of behavior. Almost all behaviors are OK in some context (masturbation – own room, door shut; nose-picking – bathroom; rocking/flapping – own house, own friends and family)

    When Todd says he wants to help autistic people “find the circumstances in which they can be their best selves”, does he mean we should not teach them to how to navigate the neurotypical world?

    It is simply possible to accept the concept of neurodiversity, while wanting the best outcome for ones autistic child and accepting that a different approach to learning will be required.

    • Tyler February 7, 2013 at 10:56 #

      I agree that we all have to get off the couch and do what needs to be done, Autistic people included. The question is do they have to not shake their hands occasionally while they work or go to school or whatever they do because other people feel a need to get wierded out by it. Do Autistic children and their parents need to be taught that they are tragically inferior sub human. Do children need to be treated like circus animals and in some cases develop PTSD during therapy in the pursuit of normal. For whom are these things done for, the “patient” or the parent. Autistic people grow and develop. All research is focused on Autistics as kids, some of the “shocking” behaviors of Autistic people are only a year or two behind their age group. For instance I hear people like myself with Aspergers have no sense of humor. I’m not much of a comedian but I enjoy a good joke and a humorous situation. In my experience little kids really don’t have a sense of humor Autistic or no, is it possible this “expert” never talked to an adult with Aspergers and asked them if they enjoyed comedy. The point is to move beyond a desperate search for a cure that probably will never be except in the form of lucrative frauds and move towards acceptance and accomodation. Autistic children need to be educated like ALL children need to be educated, but they need somewhat to very different methods of instruction. Autistic children do not need to be put in reeducation camps because they are Autistic. The assumption seems to be all Autistics are children inferior to all non Autistics and in need of their guidance and training, this assumption needs to be challenged.

  19. Nightstorm April 14, 2011 at 21:20 #

    Almost all behaviors are OK in some context (masturbation – own room, door shut; nose-picking – bathroom; rocking/flapping – own house, own friends and family)

    Stimming is not the same as masturbation. I friggin hate that analogy. Masturbation has so much social stigma and I don’t want to stigmatized stimming. Especially since NTs do similar behaviors and don’t get shamed for it. I should not be shamed for showing joy by flapping my hands and if anyone on the bus complains about it, they can suck it.

    When Todd says he wants to help autistic people “find the circumstances in which they can be their best selves”, does he mean we should not teach them to how to navigate the neurotypical world?

    No, I think Todd is saying we should give autists confidence to be themselves and not shame or guilt them being born as they are. Being NT or passing NT will not solve your problems. It’s exhausting to pass, it’s exhausting to socially lie all the time. I struggle with it every fucking day. I navigate the NT everyday and sometimes I wish I didn’t have to.

    I am sick and tired of people turning my disability in to a freakshow.

  20. McD April 16, 2011 at 04:33 #

    Sorry, bad choice of words maybe.

    I wish rocking and flapping were OK in public too. Teenage girls can be particularly cruel when you forget yourself on the school bus or in class.

    How about suggestions to get away with stims in public?

    1. Wear headphones and dress like an emo while rocking.

    2. Stick on some long bright colored fingernails and blow on them occasionally while flapping.

    3. Wear a Kapa Haka T-Shirt and say “I’m practicing my wiri” (this will probably only work in NZ – actually it is not uncommon to see groups of kids walking around doing this)

    http://www.bignoseduglyguy.com/no8wire/2006/11/kapa-haka.html

  21. David N. Andrews M. Ed., C. P. S. E. April 16, 2011 at 17:48 #

    “I am sick and tired of people turning my disability in to a freakshow.”

    My so-called support person did that on a number of occasions!

  22. Eileen July 28, 2011 at 13:49 #

    I realize this is an old thread, but Passionless Drone, maybe it is you that has the problem. You might need some passion, or heart, or humility. I can even imagine describing my child that way. I have worked with severely challenged kids, and I can still see the light in their eyes. They are people with grace and light, just struggling with their bodies. But I believe in God, and I believe that all human beings are innately sacred. Maybe what you need is another perspective. I am being totally sincere when I tell you that a relationship with God will change the way you see your child. And if you have one already, ask Him to help you. He always helps me.

  23. passionlessDrone July 28, 2011 at 17:14 #

    Hi Eileen –

    You might need some passion, or heart, or humility.

    It never ceases to amaze me how people who believe they have a red phone to the creator of the universe think they have a handle on the humility of others. I have plenty of heart, my empathy just doesn’t arise from a set of fairytales written by three thousand year dead goat herders.

    I can even imagine describing my child that way.

    You wouldn’t imagine describing reality? Why? There were no lights in my son’s eyes at that time, he wouldn’t look at you, or anyone. Refusing to acknowledge that a three year old was giving himself a concussion won’t change the facts that it happened. My son was attacking other children, including infants, on a daily basis. Those are the facts on the ground and there isn’t any way to sugar coat them, the only perspective change that gets you out of this is to simply not discuss those years of his life.

    But I believe in God, and I believe that all human beings are innately sacred. Maybe what you need is another perspective. I am being totally sincere when I tell you that a relationship with God will change the way you see your child. And if you have one already, ask Him to help you. He always helps me.

    We each seek assistance in different ways.

    @ Sullivan –

    I had given up on this thread a while ago because this topic just gets so draining. That being said, I looked up your response on 4/11/11 19:37 and agree with many of your points. I should have done a better job of understanding the your views, and those of ASAN, are often complimentary, but not always identical.

    – pD

    • Sullivan July 28, 2011 at 18:27 #

      pD,

      I completely understand the fatigue of continuing these conversations at times.

      That said, it would be good to obtain the paper or a comment from one of the authors to the meaning of “plateau”. Do they mean “zero slope” or “small slope”?

  24. Eileen July 28, 2011 at 18:01 #

    Passionless Drone,

    I respect your opinion. I am sorry you struggled so much with your son. He must have been in great distress to have acted that way. My younger daughter was quite wild when she was young, although never violent towards other kids. Still, I cannot agree with you that there is no light in the eyes of children so severely affected by autism. And they do absorb our feelings almost more intensely than typical kids. And your dismissive joke about “dead goat herders” just says it all. When you cannot see beyond the physical, you miss lots of the beauty, the poetry, and sometimes the lights in people’s eyes. You can make fun of me all you want. I just think when we see our kids as less than fully human, how can we expect the world to care about them?

  25. DareToConsider April 1, 2013 at 16:37 #

    I do understand the fear and problems that arise from statements such as that “autism steals the soul.” “Dehumanizing” is a very offensive and dangerous tendency with autism or any difference among humans.

    I’ve been married to a man with Asperger’s Syndrome for 25 years and many in his family also have autism. A friend’s husband and son are also autistic. I am a neurotypical woman. I strongly disagree with an approach to autism that describes people with autism as “differently abled” or that describes a society including people with autism as simply “diverse.”

    In all my personal experience and reading on the subject, there is a very simple essential quality that people with autism do not have: the self-reflexive theory of mind that enables synergy with other life forms. This would be considered by most to be a “spirit” or “soul” – that unseen part of a person that knows his interconnectedness with other life forms. This is distinct from cooperating with other people or owning a pet; this is the part of a person that can respond to deep ecology. The preference for technology in the development of human civilization has exemplified the spiritually absent utilization of the world’s material resources and other life forms. This is the description of the autistic world-view.

    Sustained and lasting satisfaction comes not through repeated interface with technologies but through spiritual communion with other life forms. The former depletes life, the latter nurtures it. Without judging individuals but rather judging the condition of autism, I don’t think that integrating autism into human values is constructive; I think that the prevalence of autism is a misguided human choice, by enabling the autistic worldview and proliferating the success of autism so that it proliferates. We do this at our own collective peril.

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