Autism, Representation, and the Case of Hannah Poling
According to the claim that vaccines or something in vaccines can be linked to autism—the source of much discussion and dissent for most of my son’s life—-autistic persons are “damaged” and “injured”; they were once “normal,” “typical” and “ok.” The notion that vaccines or mercury poisoning are the cause of autism not only poses some potential health hazards, but also creates an image of autistic children and adults as “less than [the rest of us]” due to a short; as “damaged goods.” Whereas, genetic studies on the causes of autism suggest that, far from being an “accident” that befalls an up-to-then “normal” family, autism is very much in the family. While neither my husband Jim nor I are autistic, we can detect many points of overlap between our boy and ourselves.
The words one uses to describe and represent autism shape our understanding of it. Last November saw the publication of a book edited by English professor (and father of an autistic son) Mark Osteen, Autism and Representation (full disclosure: I have an essay in it, about poetry, language, and trying to understand my son’s language). A book with a similar title, Representing Autism: Culture, Narrative, Fascination was recently published by Liverpool University Press. It’s written by English professor Stuart Murray who (another disclosure; I must watch my “conflicts of interest” in these conflicted times) I know: He spoke at the 2006 conference on autism and advocacy that my husband organized, and, before that, I responded to a paper that Murray gave on autistic presence and Bartleby the Scrivener (from Herman Melville’s short story).
I still need to read Representing Autism: Culture, Narrative, Fascination and a review (some of it available on Nature) by Simon Baron-Cohen makes me further interested. Writes Baron-Cohen:
According to Murray, whether we are making a film or writing a scientific paper about autism, we are superimposing categories on to it. For example, the major charity for families and individuals with autism in Britain, the National Autistic Society, was founded in 1962 as the Society for Psychotic Children. This shift in the name could have affected what we looked for and what we saw. Similar shifts occurred in the first scientific journal for autism research. Now called the Journal of Autism and Developmental Disorders, it began as the Journal of Autism and Childhood Schizophrenia. These changes signal how we used to believe autism was just the childhood form of schizophrenia, and how we used to think this condition only affected children.
We now know that autism and schizophrenia are distinct.
As Baron-Cohen further writes about Murray’s book, “one narrow slice of the autism spectrum disproportionately dominates public perceptions of the conditions”—-individuals with “savant” skills like Raymond Babbitt in the 1988 movie Rain Man and Christopher Boone in the 2003 The Curious Incident of the Dog in the Night-Time by Mark Haddon. Murray also looks at the “range of representations of autism in fiction” (Spock in Star Trek and Sherlock Holmes), and considers other, popular representations of autism:
Slanted views about autism can even be found in the research community. On the website of Autism Speaks, the major charity funding autism research in the United States, are the words “This disease has taken our children away. It’s time to get them back.” This is as clear a statement as one can find of autism as a disease, a view that many but not all autism scientists would endorse. Contrast this with Amanda Baggs’s online video In My Language (http://tinyurl.com/2pczl2), which she launched as a statement about her civil rights as a person with autism, to be recognized and understood as different but not diseased. Another website, Autistics.org, proudly proclaims that people with autism are simply differently wired, and names one of their online groups the Autistic Liberation Front. These statements, along with Representing Autism, serve as a valuable reminder that we need to challenge how we conceptualize such medical conditions.
I’ve long been fascinated, and sometimes troubled, with the question of representing autism. Charlie has plenty to communicate and not so many words and a lot (most) (all?) of what is known about him is based on what Jim and I say. I wrote about representing Charlie in this rather oldish post. What often fascinates, at times infuriates, and sometimes simply grates on me in reading about various theories of autism causation—let’s say, mercury—is that autistic individuals come across as so passive and so unable to do or be aware of much, and violent toddlers trapped in the body of a 200-pound teenager (as suggested in a recent article). My son has lots, lots, and lots of struggles—piano practice this evening exhausted both of us as Charlie kept squinting and tapping at keys with random fingers—but he is not “mercury poisoned” or something “damaged” or a “tragedy” and the association of these terms with autism limits how people understand autism, and autistic people.
Consier a letter published in the August 7th New England Journal of Medicine by Dr. Jon Poling, the father of Hannah Poling, in response to a May NEJM article by Dr. Paul Offit in which he revisits the case of Hannah Poling. Dr. Poling being the father of Hannah Poling and therefore, assumedly concerned about anyone’s representation of her, writes:
By omitting critical information from my March 6, 2008, statement, Offit misrepresents my position. I said, “Many in the autism community and their champions believe that the result in this case may well signify a landmark decision as it pertains to children developing autism following vaccinations. This still remains to be seen, but currently there are almost 5,000 other cases pending.”
Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.
Offit confuses issues by comparing Hannah’s case with unrelated decisions in “vaccine court.” The Office of the Secretary of DHHS, through the Department of Justice, conceded Hannah’s case. There was no courtroom hearing and no decision from the “unusual vaccine court.”
Dr. Poling takes Dr. Offit to task for, specifically, “misrepresenting” Dr. Poling’s “position,” due in no small part to Dr. Offit not having access tp Hannah Poling “personal medical records” (on the disclosure of which, see this post; only two documents about Hannah Poling have been drawn on by the public, regarding her medical information). Dr. Offit’s conclusions about Hannah Poling are, according to Dr. Poling, “consequently flawed” and Dr. Offit is said to be in error for “confusing” the details of Hannah Poling’s case with those of other “unrelated decisions.” And yet, while depicting the case of Hannah Poling, his daughter, as separate and specific from the cases of other autistic children whose parents say they have been “injured” by vaccine, Dr. Poling writes that there is a “high frequency of mitochondrial dysfunction in autistic children” (he references this study), which would suggest that what caused Hannah Poling to “become” autistic has certain similarities to the situation of other children. Ought there not to be overlaps between the “details of Hannah Poling’s case” with those of other “unrelated decisions”?
Inevitable that any of us are prone to misrepresent Hannah Poling. I for one think (rightly or not) that Jim and I are the “best” at representing Charlie, and yet I wonder how my parental perspective, with its messy foundation of feelings and lots of love and worries about the great unknowns out there, can cause me to see things about Charlie that maybe aren’t exactly so, and thus to “represent” not so much him as he really is, but him as I think he is. And perhaps this is the case for any parent representing their autistic child.
I ought to note, Prof Murray is himself the father of three sons, two on the autism spectrum.
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POSTED IN: Books, Cause, Genetics, Legal Issues, Literature, Media, Psychology, Science, Vaccines
26 opinions for Autism, Representation, and the Case of Hannah Poling
Jennifer
Aug 7, 2008 at 1:39 am
Um. Spock?
My Trekkie soul is…speechless.
RAJ
Aug 7, 2008 at 8:28 am
It’s about semantics. The one area where there is a consensus between all theories about ‘autism’ is that it is caused by a disruption in early brain development. Some parents may wish to see their children as ‘wired differently’, others see their children as ‘damaged’. They are different labels for the same condition.
Research into the mechanism of autism etiology has not produced any significant findings over the last several decades. The genetic and environmental components of autism are plagued by the same problems, heterogeneity and lack of specificity.
Autism has always come under the domain of child psychiatry and all data is interpreted by current psychiatric opinion. For decades Feudian theory and psychodynmics heavily influenced thinking about etiology (Kanner, Bettleheim). This changed in the 1970’s and child psychiatrists are now heavily influenced by behavioral genetics and interpret their research through various genetic models. No gene specific to autism has ever been identified despite the almos weekly hysterical headlines ‘New Autism Gene Discovered!’
Autism is a medical condition and the glacial pace of progress will continue until ‘autism’ is removed from the control of child psychiatrists an psychologists who continue to be heavily influenced by behavioral genetics and placed under the domain of medical researchers
toxic
Aug 7, 2008 at 8:43 am
Your child may have always been autistic, right from birth, but not everyone fits into that same mold. So many have regressed from vaccines. You can continue to pretend that doesn\’t happen, because it didn\’t happen to you. But that won\’t make it true.
Kristina Chew, PhD
Aug 7, 2008 at 8:49 am
If it is all about semantics, some consideration of how we represent autism (as tragedy; toxic; etc.) can be of use.
mayfly
Aug 7, 2008 at 9:30 am
Ycour travels with Charile and your dedication to him are inspirational.
It is this personal dedication, Charlie’s school, and your love for him which has brought him this far.
Comparing your attitude with that of John Best who called for the euthanization of autistic children yesterday, I’m solidly in your camp.
A very blog to read is Autism Gadfly, an Asperger’s man whose slogan is “We don’t need no stinkin neurodiversity.” It is not an in-your-face blog, like Hating Autism, but does present a different view than the one found and sometimes promulgated over common sense on the Autism Hub.
The Gadfly pointed out yesterday that Autism is brain damage and wondered why we should celebrate it. Autism Speaks are looking for ways to fix the damage. It is a good organization.
Thr damage in Autism is in the wiring. Synaptic connections have been shutdown. In some cases, relatively few. In others so great a number the child’s mental development is
greatly delayed.
The idea of early intervention is to turn on these communication pathways. ABA has been the most successful program in doing this. Early intervention because these programs work best before it is much easier to revive the connections at that time. Reviving them can have a cascading event. The programs work best when there are more active connections.
You have done a great job in waking up Charlie’s connections. However Kristina many autistic chidren do not respond even as well as Charlie does. It may be possible some day to have a medical treatment which can re-establish those connections or ensure they are not turned off during development. This would help a great deal of children and many adults as well. It would help Charlie.
I find it a complete mystery why so many people rail against research which might one day allow this.
The best thing about the neurodiversity view is that it promotes a healthy optimism.
However, it can be a blind optimism. All children respond to love and inclusion, but some so much less so than others. When this love fails we need other tools.
It is to the detriment of those children and adults with autism to paint such a rosy picture that the thought of developing those medical treatment is considered evil.
My daughter’s autism has not helped her in any way what so ever. There is nothing about her autism which good. Nothing at all.
I pray that despite all odds a breakthrough is made and an effective treatment is found for this horrible condition which in its worst manifestation strips it suffers of so much.
passionlessDrone
Aug 7, 2008 at 10:08 am
Hi Mayfly -
I consistenly find your postings insightful, well written, and very close to my own feelings.
Very nicely stated.
- pD
M
Aug 7, 2008 at 11:14 am
I’ve always hated that people only want to hear about autism on the condition that savantism is involved. Even when the books or movies are well intended, they essentially turn “difference” into a commodity. It’s something for people to gawk at, something “interesting” they can consume as a cheap thrill.
The daily struggles that can characterize autism: they go hand-in-hand with daily victories. These are interesting and exciting…they just lack the “cheap thrill” quality that tends to bring in the gawkers. Maybe that’s not a bad thing.
Particularly with Asperger’s, I think what is most “interesting” about it are…not the differences…but the traits that are experienced by most people, just less intensely. Feeling like you have to act through social interactions, feeling that “mask” when around others…it’s a feeling that can be amplified in Asperger’s.
So the broad range of things autistics and non-autistics have in common…people generally ignore these in order to emphasize a tiny element of difference.
Hmm…I wonder if that’s the real reason the savant genre is perpetuated: it’s a distancing mechanism for non-autistics.
Blech. Anyway. Hi.
mayfly
Aug 7, 2008 at 12:15 pm
It is more than just semantics. There are those who won’t enroll their children in an ABA program lest it take way their children’s autism. Such people are putting their belief in neurodiversity over the welfare of their chldren. There are those who pursue treatments based on questionable information which either do nothing, do harm, or in extreme cases have killed children. Some of these folks can get to the point where they see killing children as a good thing. An act of kindness. Such people have lost all sense of what is good and moral. They need more help than their children.
Most do not hold to these extremes. Neurodiversity supporters do have their children participate in ABA programs and try hard to move them up the spectrum.
People who wish for a cure, do not all buy into the panaceas promulgated by snake oil salesmen and also by the true-believers in unproven protocols. They enroll their children in ABA programs and strive to make them as participate.
I believe if we somehow found a way to medically re-awaken the connections shutdown by autism in our children’s brains that almost all people supporting the neurodiversity viewpoint would be lined up with their children for the treatment. Why wouldn’t they? What would justify not doing so? What action would best benefit the children?
There is good in the neurodiversity movement, but when it placed above the welfare of those afflicted by autism. it is by no means a good thing.
Another Voice
Aug 7, 2008 at 12:43 pm
The representation of people with autism by certain segments of the autistic community has been very troubling for years. The negative references seem isolated to the realm of autism and do not appear on web sites dealing with Downs, MS or cancer, at least not that I have found.
If someone walked into a children’s cancer ward and referred to those children as “train wrecks”, I believe that person would be soundly thrashed and thrown out. In the sphere of autism one hears that and worse all the time. Once the person has gotten their disappointment off their chest we expect to hear that they are a self-proclaimed “advocate” and are using such language to promote “awareness”. An empty shell, soulless, stolen, mindless, poisoned, toxic and many more phrases flow freely; followed by the expectation that we should believe that person really loves their child.
Regan
Aug 7, 2008 at 1:39 pm
The luxury of describing someone second-hand, and, I guess, assuming that they are not hearing, feeling, or caring how they are characterized. As Another Voice stated, imagine doing such for almost any other group.
That is why I find many of the descriptions in the press and for media/fundraising purposes sensationalistic or sentimental. I am a person who believes that what is said to society at large has long-lasting influence and that many characterizations of those with autism verge on caricature and create stereotypes.
Eleanor has many challenges, and I am pretty sure that she is self-aware enough to know they are there. I also respect that she is self-aware enough to care about what this family thinks of her, and what this family thinks is that she is an individual–a wonderful young lady who is loved completely and valued highly.
What good would it do to do or feel otherwise?
Cliff
Aug 7, 2008 at 1:40 pm
“Most do not hold to these extremes. Neurodiversity supporters do have their children participate in ABA programs and try hard to move them up the spectrum.”
When many neurodiversity supporters don’t even buy into the idea of a spectrum, to assume that kind of motive is flat wrong. It’s insulting, really, to assume something about proponents of an idea that they protest without even addressing it.
“I believe if we somehow found a way to medically re-awaken the connections shutdown by autism in our children’s brains that almost all people supporting the neurodiversity viewpoint would be lined up with their children for the treatment. Why wouldn’t they? What would justify not doing so? What action would best benefit the children?”
That’s presumptuous, at best, to assume autism functions as an “on-or-off” switch. What we have now suggests that the connections are different, considered generally overdone in some areas and underdone in others, making someone who is looking without the veneer of “function” (which is certainly in neurobiology a somewhat biased category, as it is “functional” when it produces the typical exaggerated-normal response) to say that it is frankly conditionally different. Thus, you’re in the realm of “rewiring brains to normality’, and there have been any number of sufficient arguments against that.
Cliff
Cliff
Aug 7, 2008 at 1:46 pm
“The one area where there is a consensus between all theories about ‘autism’ is that it is caused by a disruption in early brain development.”
There was a consensus on this? I don’t think that’s true across things at all, and there are multiple theories I can think of across the top of my head (one of the recent mice studies, many of the genetic ones) that don’t theorize this.
alyric
Aug 7, 2008 at 4:39 pm
Mayfly wrote:
“There is good in the neurodiversity movement, but when it placed above the welfare of those afflicted by autism. it is by no means a good thing.”
Spare us the pious platitiudes, especially those bathed in some highly idiosyncratic view of ‘neurodiversity’. Why should I presume you may know what you’re talking about?
To the unwary reader, this person seems to think this makes sense:
“The idea of early intervention is to turn on these communication pathways. ABA has been the most successful program in doing this. Early intervention because these programs work best before it is much easier to revive the connections at that time. Reviving them can have a cascading event. The programs work best when there are more active connections.”
There is no research basis whatsoever for this kind of wishful thinking.
mayfly
Aug 7, 2008 at 6:03 pm
here are plenty of articles about the effectiveness of early intervention. Why not start with the Journal of Autism and Developmental Disorders.
We do know that genetic defects which alter synaptic proteins such as neuroligin can result in autistic symptoms. We also know that not all synaptic pathways are active in any brain. The theory that MR and low-functioning autism have had too many of these pathways turned off is not new. We may know soon what mechanism is used to verify these pathways
One conjecture is that if the child undergoes treatment early enough the chances of awakening the shutdown connections are greater. There have been articles in peer-reviewed journals which say much the same thing.
If a medicinal intervention is found which allows your child to learn and to participate in this glorious world: you need to ask, is it real? You need to ask is it effective? You need to ask, is it safe? But if you fret that such a treatment would cause your child to not be autistic, then are you for your child or for autism?
If you also read my post you’ll find I said that it doesn’t work for all children. I’m praying for a medical breakthrough for these.
Sorry that you are offended by anyone suggesting there is bad in the neurodiversity movement.
If a cure were to be found a parent needs to ask about its effectiveness and about the risk to the child. A parent should not worry one bit about there child losing his autism disgnosis. That when a count of autism suffers is made there, their child is no longer counted among them. If that stops you then you are an advocate for a brain disorder. I don’t think that’s a good thing.
If you are autistic, but do not suffer from a brain disorder, to think that you speak for those who do is so much more presumptuous than any statement I have made.
You are in no way suffering the same affliction no matter how much you wish it so.
I’ve said good things about neurodiversity. It that it gives its practitioners an optimistic outlook. An outlook which is good for them and their children. But to deny the terrible toll autism takes on so many children is wrong.
Kristina Chew, PhD
Aug 7, 2008 at 6:26 pm
Sorry I have not been able to respond more at length.
@mayfly,
very often I’d say I power myself on a diet of “healthy optimism.” it sustains me, but it doesn’t take too much (just a syllable said right! listening to me read a page and a half of a book) to keep me going.
Emily
Aug 7, 2008 at 11:43 pm
Regan, you say it best. And no one can really speak to this except from their own point of view when it comes to *opinions* about autism and opinions about people’s attitudes about autism. However, one thing that can be kept closer to fact is anything to do with the underlying mechanisms of autism, and there has been some freewheelin’ funtime on this comment thread about those. Can we just reference neural plasticity and not try to make up mechanisms that no one has identified? And it’s possible to be born with a genetic disorder that doesn’t manifest until a specific developmental period (often from one to two years of age) and that manifests with regression–many of them do exactly that. Just because someone didn’t show symptoms or parents didn’t recognize them until a certain age doesn’t mean the child was not born with the disorder.
As for parents who say that there’s not one thing about their child’s autism that is good…I’m sorry, but that genuinely confuses me. How do you separate out what is “autism” from what isn’t when this is an organismal disorder affecting many body systems? My son, for example, has the loose joints and oddly angled body postures often associated with people who have his disorder. That’s not necessarily his brain, per se (some of it is his collagen), but it is just as much part of who he is as anything else. Is it good? Bad? That’s a matter of perspective. We have it easy, I know, compared to many parents of autistic children. But I know children who are profoundly affected by global developmental disorders, and I can find good things directly associated with those disorders about these children. It is difficult to imagine not being able to find anything good in anyone except possibly a sociopath. It is sad to read that, but I don’t live that life and cannot speak to the reality of it. I feel for you and have you in my thoughts.
I don’t think that “cure” is a bad word, necessarily (although we don’t seek one), I just think it’s nonsensical for the foreseeable future. I also believe that neurodiversity is important, profoundly important, in the here and now because that’s what is going to ensure that our existing autistic children, teenagers, and adults receive the respect, acceptance, and assistance they need to function, especially after their parents are gone. And there is no question that for some autistic people, autism is not a horrorshow kidnapping of self but something that is part of their identity, something they have no interest in “curing.”
I believe that the X-Men series did a good job presenting the affected parties in this scenario–the proudly mutant mutants, the mutants whose quality of life is so poor that they want a cure, the parents who want them cured, the society that alternately is fascinated and reviled by them…it’s all there. And it’s all here, too. No matter how much we discuss here and elsewhere, these “parties” will exist because we are none of us having the same experience as anyone else, we none of us have the same quality of life and neither do our children, and we shouldn’t expect the same outlook or opinions or points of view.
Kristina Chew, PhD
Aug 8, 2008 at 1:41 am
About the neurodiversity and the ABA, some thoughts on the next (to appear in about 3 hours) post.
One reason I can see what Charlie has, is, as not a tragedy is from the experience of life with my very ADHD husband. It’s not as simple as saying that ADHD is good or bad. ADHD causes Jim some profound and painful struggles and it’s affected much, and much more, in his life. But there is something about how his being able to pay attention, or not pay attention, to many things are once; to have his mind continually focused on the next thing, to rarely be able to sit down for long periods of time without lots of effort: These have had imperfect benefits.
@Emily, I haven’t seen the X-Men, though maybe I should think of our little family of 3 as a variant thereof.
C. S. Wyatt
Aug 8, 2008 at 4:03 am
I struggle with this question: would I want to be “fixed” if it meant losing some skills? My opinions varies with my mood.
When I generate complex computer code in my mind, seeing it float in space, I feel useful. When I solve a puzzle concerning dithering ratios and visual perception, I feel useful.
My wife asks me if I would prefer to not read multiple languages. Maybe I’d rather not do boolean math in my head. Maybe I’d like to lose the extreme focus I can maintain on projects I love. And I suppose she is right.
Then, I realize I’m stuck at home most days. I am not “normal” and I do need to work around my mind / body limits.
I have one close friend. My wife. I don’t take walks, I can’t do downtown. I had to stop riding my bike since we moved to MN — but I do manage the scooter twice a week about 60 percent of the time. (My wife drives me when I can’t deal with the streets.)
I don’t do staff gatherings. I skipped several graduate school events. I am isolated.
So, gifts? I have some. Price for gifts? Long periods of being trapped, non-verbal, shaking, rocking, lost in my own overwhelmed mind.
Not a good trade. It should be, I guess, but it just isn’t. I’d rather trade my supposed high IQ for a few more social connections and the ability to walk downtown.
Just some random thoughts from an HFA individual.
C. S. Wyatt
Aug 8, 2008 at 4:09 am
Oh, and don’t tell me the various therapies and special “aids” in elementary school were worth it. It was painful, cruel, and simply gave me the “ability” to fake normalcy at an extremely high cost internally. Great, I can appear normal and make eye contact… and then want to crawl into bed, wrapped like a mummy for two or three days.
Screw it. I might want to be “normal” but the pain of being “trained” to act normal is not the same as really being normal. Sure, it helps me professionally, but there is a trade-off no one seems to appreciate.
Then again, I have to be reminded that the world expects certain things and I must fit in or I’ll end up being dependent on others, sitting at home useless.
At least I can definitely earn enough to be independent… even if the cost is several lost days each month. Yippeee.
Storkdok
Aug 8, 2008 at 7:48 am
C. S. Wyatt, thank you for sharing that.
May I ask a question?
What could have been different about your educational experience that would have helped and not made you feel like you were “faking normalcy”?
alyric
Aug 8, 2008 at 10:16 am
“Sorry that you are offended by anyone suggesting there is bad in the neurodiversity movement. ”
What I find disturbing is that such as you presumes to know what ‘neurodiversity’ is about, period. Those of us, associated with the Hub over many years have no such such guiding certainties, however comforting that might be as a substitute for thinking.
AnneC
Aug 8, 2008 at 2:19 pm
Some people have chosen to define, perhaps based on a particular kind of high regard for the DSM(?), “autism” as “intrinsic suffering caused by the structure of a person’s brain”. People who hold that definition seem impenetrable by any suggestion that autistic people are not necessarily “broken” by definition. I don’t like arguing with such people because it never goes anywhere.
Essentially I think a lot of it comes down to fear, though. Some people seem to fear that IF autism is NOT “officially” defined as something awful, their children will not be granted the help they need. I have worried about this plenty in my own self-advocacy efforts, believe me, because I do NOT want to do anything that would hinder autistic kids’ or adults’ access to needed services. I have agonized long and hard over whether my publicly representing myself as an autistic self-advocate might undermine someone else’s efforts to deal with more “severe” issues than the ones I experience.
Initially I was very apprehensive *because* of this concern, but over time as I learned more about the variety of autistic experience and abilities and such, it became quite clear to me that the only reason to deny that in some ways I am indeed “like” some of the persons described as “severe” would be due to shame on my part — shame I don’t have.
I am not interested in claiming privilege garnered through pretense at disassociating myself from others who make sense to me in deep ways even though people would probably consider me “HFA” and them “LFA” based on things like language use and “independent living skills”.
I’ve fought long and hard to get the skills I do have in those areas, and whenever anyone tries to insist that people like me have it “easy”, that we don’t “deserve” any help, that we could actually do everything the “standard” way but choose not to out of malingering or some desire to be “special”, it feels like I am being kicked in the face.
I wish there was some way to prove empirically that by self-advocacy and fighting for a more tolerant, flexible, understanding culture, autistic adults who communicate online and elsewhere are going to be helping autistic people of all ability types/levels live better and less difficult lives, but it seems to be one of those things that either you see or you don’t.
All I can hope, I guess, is that eventually more people see that self-advocacy efforts by those autistics who can “write long Internet essays” are not, in fact, hurting their kids or them (if they are autistics who would take “cures” if available). And that regardless of one’s thoughts on “cure” and whether autism is a “difference” or a “disease”, a more flexible and tolerant society that understands the INTERdependence of all humanity will help all of us.
Kristina Chew, PhD
Aug 8, 2008 at 2:30 pm
@AnneC,
keep on writing——
ditto your last sentence a couple times over.
C. S. Wyatt
Aug 8, 2008 at 5:11 pm
@Storkdok
My educational experiences were generally miserable, anyway, including my experiences in graduate school in a program that should be a lot more tolerant of difference.
Some matters are simple.
Stop equating eye contact with listening. Stop equating eye contact with “respect” as well. Making eye contact part of therapy is stupid. It is not an emotional problem — it’s you wanting my “complete attention” and signs I care about you.
Stop equating social mimicry / norms with some sort of intelligence. I hate the “multiple intelligence” people: “Oh, you lack emotional and social intelligence.” No, I don’t. And I am increasingly resentful of such claims. Mimicry of lies and social customs is not intelligence — it’s lying. Explain the need for therapies that teach lying, please.
Sensory integration? Again, this is like teaching someone to tolerate pain. They do this in the martial arts. I suppose parents are proud that their child can take being pounded in the stomach without complaining? Not complaining is a skill? Not admitting I’m in distress or pain is a good thing?
Sure, I bet parents are thrilled that I can “be with other people” and engage in those ever important “social events” that others value.
Such lessons cause someone like myself to think I must be “broken” and “damaged” because the best I can do is fake normalcy to make other people more comfortable.
People ask if I’m not better off with “skills” to deal with the world. I am if I think the world is better than me — which is a lousy perspective.
I’m sure people think the therapy is great because the patient is made to appear more “normal” of “loving” or whatever. That’s pretty selfish of other people.
My own research points to these problems existing online, as well, because social norms are simply recreated online in various forms. So, technology is not the answer — changes in attitudes will be.
Learning how to cope with stress is a good skill. Learning to lie about the stress is not. Avoiding meltdowns is good… being told you should never have them is not, since it ignores whatever the causes might be.
You want skills that do matter - communication. Honest, unfiltered, communication. In my case, I loved typewriters (and still do). Computers are almost as good.
But, people have to listen.
Storkdok
Aug 8, 2008 at 9:31 pm
Thank you, C. S. Wyatt!
I completely agree with you, and this is how I am raising my son. I try very hard to listen to him and what he wants to do or not do.
He is quite game to try things and tells me what he wants to do. We tried the Circus Smirkus last Monday. He had his earmuffs on, and we sat near an exit to take breaks. He knew it would be loud but really loves the unicycles (wants to ride a unicycle one day). It was VERY LOUD! I could hardly stand it, but he wanted to do it, he said. We had to wait 45 minutes, then watched it for 30 minutes, and he wanted a break, then said he wanted to go home, so we did. He got to see the unicycles and some other stuff, he loved it! He got enough. That night he said he wanted to go back again the next day! But we couldn’t.
He just finished summer day camp, and absolutely loved it! He got two awards today! He is looking forward to going to a small production for kids of The Ugly Duckling, says as long as he has his ear muffs, he wants to see it!
I have never forced him to look at people in the eyes and specifically told the early therapists not to do that. He now understands that to get someones attention, he looks towards them, but it doesn’t have to be in the eyes.
I try to anticipate any changes or sensory stimulations that could be overwhelming and strategize with him on what will help or that he may not want to do something. But he has insisted on doing a lot of things that have surprised me, because they are very loud, but he wears earmuffs and takes breaks and sometimes cuts it short, and that’s fine with me, whatever he enjoys and wants to do.
And I would much rather have him be honest and frank.
Most of all, I want him to be happy. I want him to have a healthy good self-esteem.
Thank you so much!
Jen
Aug 9, 2008 at 9:25 am
I think that most if not all parents want their children to have a sense of worth and self-esteem, but equating education and/or ABA therapy as being detrimental to those goals is wrong. I agree whole-heartedly with the thought that the world needs to accommodate differently-abled individuals, but I think that the differently-abled individuals need to (within reason) learn to accommodate those around them as well. Therefore I will try to continue to teach my son (who’s 3) the basics of common courtesy and good manners, how to share, how we need to use our “indoor voice”, how to ask nicely for things, and yes, how to respond when someone asks him a question, or attempts to engage him in a conversation. Do these skills come naturally to him? No, not really. Does the fact that they don’t mean that he should get a pass on it? I don’t think so, because I believe that he has the ability to learn them. If I didn’t think that he could, then I would modify my expectations of his behavior accordingly.
I appreciate the views and perspectives of the adults on the spectrum who post here because it gives me a glimpse of what the future may hold for my own child, and does a lot to counter-act the negativity commonly presented in the media about autism. But I wish sometimes that they would appreciate that the parents who post here are trying to do the best they can for their children, and that even though they (the adults on the spectrum) might not agree with the parent’s views, we know our own children best. I’m not talking about the people who are trying the potentially harmful “experimental” treatments, but sometimes I feel as though by enrolling my son in an ABA program, I am guilty of some neurotypical plot to assimilate all autistics into mainstream society, and that’s just bunk. My son *loves* his ABA therapists, and loves going to his ABA program. One of his teachers recently described him as a “joy to work with”. Does this sound like a program that is “painful and cruel”?
There’s been a lot of discussion recently on inclusion and accommodation on this board recently, and whether or not an autistic child can help they way there behave in public, and what that child’s parents obligations are to society with regards to that behavior. Certainly I am aware of my son’s limitations, and what he can and cannot tolerate. Certainly I am aware that certain environments are intolerable for him, and I try to minimize his exposure to those environments (mostly for his sake). But I also know that he knows what our expectations are of him, and he’s intelligent enough and self-aware enough to know when he’s misbehaving. There seems to be the assumption that kids with autism can’t help their behavior, and while that’s sometimes true, other times they’re just being like any other kid, and need to be reminded of where the limits are. Saying that the world needs to accommodate them at all times is like saying that they can’t learn, and personally I find that incredibly insulting and condescending. (Sorry, I might have gotten off-topic a bit).
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