Acceptance vs. Cure
Paul Nyhan is the family reporter for the Seattle Post-Intelligencer and writes the blog Working Dad. He is “knee-deep” in a project on parenting and autism and, after watching the video of a 9-year-old boy, D, Nyhan writes:
I discovered the post through Autism Diva, a fascinating blogger who writes about autism and the tension between accepting autism and the drive for a cure. The deeper I get into this project the more it seems the tension between acceptance and the public effort to find a cure, or at least alleviate autistic traits, is one of a parent’s central challenges.
Two other ways in which this tension manifests itself are: Is autism a difference, a manifestation of human diversity and variation—-or is it autism a disease that one “suffers” from? Is autism something that has always been with us, or is something completely new, a disorder with distinctly biomedical symptoms (especially in the GI system) that is appearing in epidemic numbers among children today; that steals away a child in the night?
Nyhan has identified what is indeed a source of tension in discussions about autism, as evidenced by the back and forth in the comments on this post regarding Amanda Baggs‘ appearance on CNN. A letter today from Phil Schwarz, Vice President of the Asperger’s Assocation of New England, in response to last week’s Washington Post article on labeling on the rising number of American children who are given labels (ADHD, ASD, LD, gifted, etc.), describes another way to think about autism as a disability, but without drawing on medicalizing terminology:
As I said to Maia Szalavitz [when she interviewed me for her story], it’s not labels that are problematic, it’s their baggage. Our society adopts the medical model of disability: something “broken” that prevents the individual from accomplishing goals the “normal” way. We don’t deal very well with whatever we can’t fix.
A better approach is the social model of disability, which distinguishes between impairment, the thing that’s broken, and handicap, the inability to accomplish goals. This model urges us to find alternative ways of accomplishing the goals, to fix what we can both in the individual and in society.
The key words here are “broken” and “fix,” “normal” and “alternative.” While I do refer to my son Charlie as “disabled” from time to time, I do not think of him as “broken” and in need of “fixing” or “repair,” throughout educational, biomedical, or whatever means. “We don’t really know what normal is is the title of the essay by Michael Bérubé, a English professor and father of Jamie, who has Down Syndrome. Bérubé offers two ways of thinking about the “norm”:
We could think of the norm as (a) what’s left over when we get rid of all the abnormalities, or (b) nothing more than the statistical mean in a fully inclusive society that incorporates every single one of us into public life to the greatest extent possible.
I prefer (b) myself, and I think you should too; but I worry that uncritical advocates of prenatal screening are thinking in terms of (a).
That is, “uncritical advocates of prenatal screening” are in favor of such tests in order to “eliminate” the abnormal—disabled, “defective” embryos, in this case, who would grow up to become disabled, “defective” persons; the idea of a “norm” to such advocates is, it seems, a kind of hypothetical perfect person, instead of someone who is a kind of “statistical mean” in a society of many people, with many differences. And proponents of “curing” autism seek a cure in the hope of turning an autistic child into some idealized—non-autistic, not-disabled child—”normal” child.
Acceptance of autism is, indeed, the opposite. It involves acknowledging, appreciating, and seeking to learn one’s autistic, disabled, “different” child on her or his own terms. I accept my son Charlie’s autism even as I acknowledge the specific challenges (in his learning and otherwise) and also, even more, seek to nurture his special strengths. Acceptance, I think, is often understood as a much more passive stance to assume than the active, aggressive, “fighting autism” attitude implied in curing, defeating, etc. autism. But acceptance can be active too, and even more active than attempts to cure one’s child of autism: Acceptance involves a parent, a person, changing her or his own ways of thinking, acting and being in the interest of what is best for an autistic person. To me, helping Charlie requires changing myself to live in an autistic world, as much as I can.
I often think of Charlie’s bike riding as one instance in which an attitude of acceptance—of understanding Charlie’s specific needs (especially his motor and sensory processing particularities)—made it possible to teach him, rather than insisting that he learn in some specific way. Charlie is a great bike rider and bike riding for the long distances and on hilly streets is something that we once thought he might never do. His being able to ride so well is far from a sign of any kind of cure or recovery, but certainly a triumph of Charlie learning and showing us all that he can do.
Charlie still has plenty of challenges in his learning and in his life. He struggles a lot in school to concentrate and listen; he struggles sometimes just to stay “peaceful-easy” when he hears another student in his class crying or when he is under the fluorescent lights of Target or Staples. And trying to figure out “alternative” (to refer back to Phil Schwarz’s letter) ways to teach Charlie is a special challenge for all of us, for society, to take up—-not ever with the thought of making Charlie “normal” or anyone other than the person who he is, but in helping him achieve as much as his strengths allow him It is n uphill endeavor, perhaps, but Charlie has already shown that he knows how to take his bike up an incline, standing up and pumping hard on those pedals.
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41 opinions for Acceptance vs. Cure
Leila
Mar 8, 2007 at 8:41 pm
I don’t feel any tension within myself between my wish for neurodiversity acceptance and my wish for the discovery of an effective treatment or educational method to alleviate symptoms of autism. I think acceptance does not exclude cure and vice versa. I even see this happen with many biomed-driven parents, who work hard to have our society embrace autistic people in mainstream schools and in the work place.
I understand that some of the “cure/defeat autism” folks can use words that are hurtful to autistic people, and that should be fought against. However, efforts to discover causes and treatment for autism should be praised. Parents who devote their time to help other parents in their community to cope and obtain educational services for their kids; parents who create national associations to raise funds for autism research - why should they be considered my son’s enemies?
Phil Schwarz
Mar 8, 2007 at 11:40 pm
Leila, you are right, that there is no conflict between acceptance and accommodation of difference, on the one hand, and mitigation of handicap, on the other.
“Acceptance vs. Cure” is a false dichotomy.
The problem with that is that “acceptance” gets mischaracterized in terms of that false dichotomy as “doing nothing”.
In fact, all too often parents only first hear the word “neurodiversity” in the context of a pernicious strawman characterization of advocates of acceptance of neurodiversity as (crazy) people who don’t think anything should be done about autism.
The reality is that advocates of acceptance of neurodiversity see a distinction between autism per se, and handicaps secondary to autism. We work every bit as hard as parents seeking to “cure autism” to mitigate the handicaps secondary to autism.
Where we seem to differ is on the question of the core elements of autism per se — the differences in cognitive, affective, and sensory patterns themselves. We do not think that those differences are intrinsically and completely bad, which is what is implied in seeking to “cure autism”. We think that the handicaps arising from those differences should be mitigated through change in both the individual and the surrounding society and environment.
I have no quarrel with (using your succinct description) “parents who devote their time to help other parents in their community to cope and obtain educational services for their kids [and] parents who create national associations to raise funds for autism research”.
They aren’t your son’s enemies. But some of their good intentions are misplaced.
What is problematic for me is that autistic self-advocates are generally completely shut out of these activities and associations. There are the beginnings of autistic participation in governance at the chapter and national level of the ASA, but no representation at all in, for example, Autism Speaks or the Autism Society of Canada.
The various autism organizations recently collaborated to get Congress to pass a “Combating Autism Act”. Now, I ask you — how well does such a title play, how likely is it to engage and invite participation from autistic people themselves? It only makes sense if the condition being combated is something that the people who have it want to get rid of. But as much as the overwhelming majority of autistic people who can communicate an opinion on it say so (including those who have spent many prior years *unable* to communicate), the policymakers in the big autism organizations don’t acknowledge that autism differs from, say, cystic fibrosis or muscular dystrophy in that respect: autistic people *don’t* want to get rid of their autism, they just want to mitigate the handicaps secondary to it.
I don’t understand the psychology that drives some parents and professionals to fear greater empowerment of autistic self-advocates as some kind of threat, but that fear is real and out there and palpable. That *fear* is an enemy.
I will be supportive of organizations like Autism Speaks when I see that there is sufficient presence of autistic people in their governance structures that their agendas, priorities, and approaches to public relations move into greater synchrony with the interests and priorities of autistic people, as stated by autistic people themselves.
Despite an amazing range of diversity among currently active autistic self-advocates, there is an equally surprising broadness of consensus among us on the general terms of what is, and what is not, in the best interest of autistic people.
There is a definite gap between that consensus and the agenda and message of the major US autism organizations.
That gap is only going to be closed when we stop feeding the false dichotomy, and recognize and adopt the imperatives of the social model of disability: to recognize the difference between impairment and handicap; and to focus on mitigating handicap, whether that involves addressing impairment in the individual, or addressing environmental and societal obstacles to alternative means of accomplishing goals that circumvent impairment.
If I had to come up with a slogan that would fit into our society’s current media-besotted and truncated attention span, it would be something like “fight handicap secondary to autism — not autism”.
But maybe that’s even too long for the public’s attention span these days :-).
Kristina Chew, PhD
Mar 8, 2007 at 11:49 pm
Since the public has that short attention span, I’m thinking I ought to have named this post “Acceptance vs. Cure” instead!
Phil Schwarz
Mar 9, 2007 at 12:15 am
Back to square 1, though — feeding that false dichotomy.
There’s a hole in the bucket, dear Liza, dear Liza, a hole in the bucket, dear Liza, a hole…
Or better, a favorite saying of Dave Spicer’s: “If you do [or in this context, say] what you’ve always done [said], you’ll get what you’ve always gotten.”
BTW, see Dave’s take on the false dichotomy here: http://bellsouthpwp.net/d/s/dspicer/ASNCaddress.html
Ms. Clark
Mar 9, 2007 at 12:22 am
It was nice of Paul Nyhan to mention Autism Diva!
I don’t think the word “cure” can be rehabilitated when it comes to autism. It’s too tightly linked to the idea of disease and a total riddence of the disease. You don’t cure cancer by making it easier to live with, you poison it out of existence or blast it with radiation (or cut it out, or maybe use a less toxic medicine).
The word “cure” doesn’t belong within a mile of discussions of autism, for one thing it puts into the minds of gullible parents (not all are gullible) that they can totally make that child normal. It’s not possible. There are no treatments now that can do that, and worse there are many charlatans who will promise that they can cure some autistic children (no guarantees for each individual child, of course) and then they procede to poison the kids or put them in danger, or just rip the parents off by selling them magic water, or magic magnetic mattress pads, or waste the parents time with instructions for how to make magic tin-foil hats bound to improve the child’s autism which is caused by alien mind control…
Cure, in the real world of autism is a very dangerous word, and that’s besides the message that it gives to autistics that they are damaged, diseased, toxic and broken.
I don’t know if there are too many quacks out there selling cures for Down syndrome, but I know there was one a couple years ago that sold a treatment, supplement or magic ray or something to a couple of parents in Spain. They posted a photo of their baby with Down syndrome, and a picture of a diaper full of dark yellow stool. The caption, in Spanish said, “See you can see how she’s pooping out all the extra chromosomes in her poop.” or words to that effect, because there was some kind of little stuff in the gunk in the diaper. It reminded me of what my ASD kid’s diaper looked like one time after eating smashed up bananas. At any rate, what do you suppose, were the parents eventually disappointed? I think so.
Kristina Chew, PhD
Mar 9, 2007 at 12:32 am
It does seem like some sort of linguistic gymnastics have gone on for “cure” to become equated to “defeat” and “combat”—-not to get too distracted by words, but it makes me think of how our English word “gift” is “das Gift” in German, and means poison. I have been puzzled (understatement) at the (sometimes quiet complete and almost condemnatory) wish among some “autism advocates” to not acknowledge the views of any autistic adults, and to vehemently deny that anything a “high-functioning” autistic adult has to say about autism can relate to anything about a child with “severe autism” (of course, you already know this).
Leila
Mar 9, 2007 at 12:33 am
I don’t believe in a cure for autism either. But I think scientists are on the road to finding out more effective treatments or to prevent autism to develop in children with genetic predisposition for it.
Phil, I agree that autistic adults should participate more in the state/legislative initiatives. But you can’t say that it’s all the autism parents organizations’ fault that autistic adults are not included. Autistic self-advocates may need to perfect their lobbying, their marketing, and their diplomacy. Politics many times mean to compromise in order to advance a few steps.
Kassiane
Mar 9, 2007 at 2:00 am
Compromise runs both ways.
We (autistic people) have been trying. We give. We try 5 times as hard to say what we say, or 50 times as hard, or 500 times as hard, as an NT does to say the same thing.
We give a lot of ground just following basic procedure.
I went to an ASA conference *while homeless*. Phil read my words on the experience. They listened very nicely (wouldn’t let ME in, I couldn’t afford the official meeting bit just the conference thanks to my publisher) and then proceeded to totally ignore it.
It’s THEIR TURN to compromise. We’ve given a LOT already, trying to play nice. Autistic advocates have been meeting them 75% of the way, 90% of the way, and it’s SUPPOSED to be 50%.
So when are they going to meet us their half?
Ms. Clark
Mar 9, 2007 at 5:39 am
The thing is, having the “effected” people run their own organizations is not a new idea. It might have been a new idea 60 years ago, but Deaf people have been running the Deaf “show” for at least 20 years haven’t they? I’m no expert on the Deaf experience, or their organizations, but they sure seem to be running Gallaudet University, the President of Gallaudet is Deaf. I imagine the same is true for many disabiltity organizations. The Post Polio people were radicals and did a lot to get things like curb cuts put in, it was the adults in the wheelchairs, not their parents who were demanding such things, as I understand it.
I’ve referred to the Canadian Down Syndrome Society on my blog (I learned about it through Michelle Dawson). They have a couple Down’s people on their board of directors.
So far, ASA seems to me to have only token representation of autistic adults. Kassiane hasn’t been treated well by them, from what she has shared, though I think she is still associated with ASA.
At any rate, it shouldn’t be up to autistics who have communication problems (by definition) and are far more likely than typical people to be unemployed or underemployed (money is surprisingly important when it comes to running an organization) to organize themselves… lets not get into issues of *autistics* efficiently organizing themselves into groups shall we? The irony is almost too much, even for me.
Amanda Baggs wore a famous (to autistic advocates) t-shirt during part of the taping of her interview with Dr. Gupta on CNN. It said something about organizing autistics was a lot like herding cats. It was an Autreat t-shirt from about 3 years ago. Autistics have a hard enough time pulling off Autreat, and there they are mainly trying to please other autistics. Trying to organize in a way that will charm the socks off of NTs, is like,… gimme a break, huh?
Asking autistics to “perfect diplomacy” is rather like asking absolutely blind people to perfect their color identification skills or better yet, to perfect the making of eye contact… see blind people get a break there, no one expects them to make eye contact… OK, topic drifting….
One thing that ought to make listening to autistics in their full lack-of-diplomacy glory is that they almost always tell the truth.
It must be hard to work with people who constantly lie and manipulate others… but somehow many NTs are able to do that…. more topic drift.
Then there’s this whole “but, we are here to serve the chillderuhn” thing and “you cain’t understand the needs of the payrents.” Which always assumes that the autistic advocates are never parents they-selfs. See Phil Schwartz above for further details on that. And then there’s this who thing of maybe a million unidentified, undiagnosed and misdiagnosed autistic ADULTS currently being ignored by ASA… a problem that could be rectified if they listened to ….. uhm…. autistic adults. (sorry for the sarcasm, but it’s just a little tiresome the way we have been excluded from the grown-ups’ discussions about us… ”
everything about us without us”)
http://www.publications.doh.gov.uk/learningdisabilities/access/nothingabout/nothing2.htm
http://www.amazon.com/Nothing-About-Without-Disability-Empowerment/dp/0520224817
Ms. Clark
Mar 9, 2007 at 5:45 am
ooops, make that “affected” people. I always think of “affected people” as being like Joan Crawford, maybe…
Andrea
Mar 9, 2007 at 12:19 pm
Ms. Clark:
Gallaudet University got its first deaf president in 1988 (and now has its second).
The National Association of the Deaf was established by Deaf people in 1880. The American NAD is the first of its type in the world, but many other nations have also established their own equivlanets of NAD, plus many more local organizations. So Deaf people have been running their own organizations for more than 100 years.
The World Federation of the Deaf was established in I believe the 1940s and has various country NADs from I think more than 100 different countries. So even at the international level, Deaf people have been running their own affairs for a couple of generations now.
But Deaf/deaf people have had to fight for this kind of representation too. There are still many countries in which hearing-run organizations “for” the deaf have more power and clout than whatever organizations might exist OF the deaf. (Note the careful distinction between “FOR” and “OF” — this is a very sensitive topic in the Deaf community precisely because organizations “FOR” the Deaf have too frequently been rather disempowering.) And of course Gallaudet University was there for 124 years before it finally got its first deaf president. So self-representation by Deaf people themselves didn’t just “happen”, we FOUGHT for it.
I’m very new to learning about autism, but from what I’ve been seeing on the web (through Amanda’s blog at ballastexistenz.autism.org and elsewhere), it is clear that autistic adults also are FIGHTING for their right to speak (type, write, sign, point-at-communication-board, or otherwise COMMUNICATE) for THEMSELVES.
I know it must be frustrating and infruiating to see competent autistic adults who very darn well known their own needs better than anyone else be so consistently devalued and pushed aside while the supposed “experts” (which brings into question the meaning of the word “expert”) speak “for” them. But keep up the cause. Little by little progress WILL be made. If Deaf people tend to have stronger representation in our own organizations (and parent organizations etc) that’s simply because we had more of a head start (in finding each other, building a community, getting an education, and learning to advocate for ourselves. (From a historical perspective, I mean, not necessarily as individuals.) I’m sure the autistic advocacy movement will catch up — with time and persistence.
By the way, if anyone here is curious about Deaf history (in case you might derive any lessons from it that might help inspire you to push on with the cause in autism advocacy): there will be a PBS documentary on that on March 21 ‘07 9 pm EST (check local listings for exact time and channel number) called “Through Deaf Eyes”. More info at:
More info on the TV program on the web at http://www.pbs.org/weta/throughdeafeyes/
Also at http://www.gallaudet.edu/x3666.xml (With informaton on the dvd and the companion book)
And more info on the traveling Smithsonian museum exhibit that inspired the documentary, at http://depts.gallaudet.edu/deafeyes/
Paul Nyhan
Mar 9, 2007 at 3:03 pm
This is Paul Nyhan, and I wanted to add these insightful comments will help me as I explore the challenges that parents face soon after their child is diagnosed.
I can see that cure vs. acceptance could be a false dichotomy for people who have spent a fair amount of time as parents or individuals with autism. But, how do parents balance those two ideas in the weeks and few years after a diagnosis in an environment where the word cure pops up regularly, even as they understand acceptance, in some form, will be a critical and evolving perspective as their raise their child?
It also strikes me the rise in autism diagnoses is already challenging the definition of normal in ways that other disabilities have not. I wonder how far this change will go.
I am still weeks from writing anything. So, if you want to share other thoughts you can reach me at the newspaper’s parenting blog, Working Dad at http://blog.seattlepi.nwsource.com/family.
Marcie
Mar 9, 2007 at 5:22 pm
Perhaps it should be, for the attention span challenged ;-) , “cure vs. helping”.
What I’ve noticed is that those who seek a cure (i.e. not helping, not adaption, but a genetic or perhaps medical wipe-out) pay lip service to the idea of preserving the “good” while getting rid of the “bad”. Personally, I’d love rid of the Sensory Integration issues but not at the cost of changing my personality completely. And from everything that I’ve researched, there’s no way to do one without the other.
Leila
Mar 9, 2007 at 7:16 pm
Ms. Clark, if autistics want to run an effective lobby, they should get the help of professionals in public relations to better get their message across in the media and with authorities. I’m sorry but every social movement does not go very far if they rely only on themselves. They need expert professionals to help them in different areas.
Kassiane
Mar 9, 2007 at 7:41 pm
Are you volunteering to pay for it, Leila?
Cuz most autistic adults are POOR. Guess you didn’t see that bit about HOMELESS. And haven’t seen the stats on homeless, SSI, unemployed, underemployed.
We shouldn’t HAVE to lobby to speak for ourselves. Groups should have been asking us to begin with. We certainly shouldn’t have to HIRE PEOPLE to PAY for the great HONOR and PRIVELEDGE of being ALLOWED to tell NON AUTISTICS what it is to BE AUTISTIC.
Think about what you’re suggesting. Think real hard. Should you have to PAY a MAN for the honor and priveledge of telling a bunch of MEN what it’s like to menstruate? Hm? Because you’re saying we should have to do the same exact thing.
Except women:
-get paid more than autistics
-and don’t have Congress declaring war on them
so it’s an imperfect analogy, but an equally stupid question.
Kristina Chew, PhD
Mar 9, 2007 at 8:16 pm
I see the “acceptance/cure” (to refer to the dichotomy again) dispite, debate, disagreement as also within the larger context of disability studies and disability rights.
And I think often, too, of the notion—the reality—-that we will all be disabled someday.
Ms. Clark
Mar 9, 2007 at 9:34 pm
I’m rather stunned by Leila’s comment too. Darlin’ if I may be condenscending, autistics would have organized something by now if it was possible for them to under the conditions we have had up until now. (widespread poverty, anxiety issues, poverty, lack of money, communication issues, did I not mention above that we are mostly poor people? Did you see Amanda Baggs on CNN? She lives in low-income housing.)
There are a few ASD folks with middle income ranges, but they apparently haven’t figured out how to get a non-profit org going (takes money, you see, as mentioned earlier, takes maybe $500 minimum to get the legalities put straight to START a non-profit, and without a non-profit one has trouble accepting donations and then people on SSI get scared that they’ll lose their SSI if it LOOKS like they have a good income)
It’s not like the idea of getting themselves represented properly in the wider media and in places like government agencies is a new concept to autistics. For crying out loud the online autistic advocates probably have an average IQ of 130. They are well educated, sometimes well self-educated people with sharp, laser-like logic and lots of experience available to them.
Yeah, autistic advocates have thought about setting up non-profits and sending out press releases, and contacting celebrities to attach their names, and so forth, it’s just not gotten very far, cuz, uh, mostly cuz we don’t got no money.
GRASP might be different, but they have some employed autistics running that one. They have Sigourney Weaver associating herself with them now. Ari Ne’eman is making some headway with the new ASAN, both GRASP and ASAN are mainly New York City and environs organizations, neither is very well known.
Then there’s the whole issue of who would we trust, as Kassiane points out to help present and autistic-centric message? It would be like the NAACP hiring an all white PR firm to help promote African-American History Month or something, and none of this should be necessary, the big orgs should be working hard to hand over the steering wheel to autistics who can and want to run organizations (not all can or want to). Autistics are easy to bully and exclude and so the parent run orgs are doing what comes easy for them, bullying and exclusion.
Kristina Chew, PhD
Mar 9, 2007 at 10:18 pm
Andrea, thank you for all the information and for the links to pbs and more—-more than appreciated.
The responses to my posting of Ari Ne’eman’s testimony on the New Jersey bills regarding the Asperger Syndrome Pilot Initiative and also the Adults with Autism Task Force contained some interesting back-and-forths. Who represents who? When is one speaking for autistic adults, when for one’s own “personal agenda”?
I planned to be at the Monday Senate Hearing and did not attend because Charlie was sick and I stayed home with him (actually, he has been sick all week and so we have been home all week together). Ari was the only person representing ASAN’s position and I really wished I could have been present. Parent advocates and autistic adults certainly don’t have to be at loggerheads—there is common ground.
Leila
Mar 10, 2007 at 12:16 pm
Ms Clark and Kassiane, we know autistic adults are not alone in the neurodiversity movement. There are many parents and siblings involved, and I bet you’ll find lots of them who can help them in the political and PR front. Not to mention autistic adults that have skills to be excellent self-advocates. In my own community there’s an autistic adult that is very well known as a neighborhood activist - I don’t even know if he’s involved in autism advocacy.
Your comment about being poor - how do you think grassroots movements begin? It starts with people with no means but a lot of drive to organize. It happens in the poorest countries in the world. All it takes is a couple of people with a more strategic view and soon they’ll find allies in other social organizations that can help you raise funds. People who identify with your cause will be happy to work for you.
Kassiane
Mar 10, 2007 at 3:07 pm
Yeah, all those hyperorganized people with lots of money who don’t have TVs and therefore havent been poisoned by AutismWeeps and their ilk…
I ask again, are YOU offering to pay for it? Cuz the regular disability organizations don’t want us (they proudly announce “At least there’s nothing wrong with our minds!”), the ARC and the like don’t want us because the majority of us don’t have mental retardation, et cetera.
Where you got the idea we should have to fight for this is beyond me. What PR firm are you using to get out the message to men about having periods and giving birth?
Kristina Chew, PhD
Mar 10, 2007 at 5:04 pm
The internet lends itself more than well to grassroots advocacy and I think people listen to it more and more, whether or not they acknowledge it. So the first thing, I think, is continuing to advocate online, without relenting.
Leila
Mar 10, 2007 at 10:47 pm
Kassiane, there’s a lot of men in the staff of feminist organizations. One of my best friend’s husband is a breast-feeding advocate. So you get the idea.
Kassiane
Mar 11, 2007 at 3:30 am
You didn’t answer my question. Here it is again, in mostly small words:
Who’s your PR MAN on the subject of menstruation and giving birth?
If you can’t answer it then you are expecting of autistics what you yourself will not do. That’s called hypocricy.
Kev
Mar 11, 2007 at 4:18 am
“But, how do parents balance those two ideas in the weeks and few years after a diagnosis in an environment where the word cure pops up regularly, even as they understand acceptance, in some form, will be a critical and evolving perspective as their raise their child?”
That is a good question Mr Nyhan. And a pertinent one. I’d wager that just about every parents first thought after hearing the diagnosis is: ‘OK, how do I cure this?’.
Something that is completely new is completely strange. So I think we (and I’m British so by ‘we’ I’m not referring to nationality) have to lessen the strangeness (i.e. the unfamiliarity) of what it is to be autistic before diagnosis - possibly even before birth or conception.
Its tricky as anything like this is seen as ‘defective’ and therefore people want to avoid talking or thinking about it. Maybe we have to start including disability in parenting classes so new parents are at least familiar with an autistic (or Down’s/Deaf/CF/etc) person and that an automatic knee-jerk for cure is just that - a knee jerk reaction.
Kristina Chew, PhD
Mar 11, 2007 at 11:49 am
Kev, I really like that idea—-when expecting parents hear “Down’s” or “disability” now, it is phrased as something to be scared of and avoided at all costs. I think it’s possible to “lessen the strangeness” and a first step is to provide positive representations of autism. And to make it clear to those who present less than positive ones that they are doing new parents a disservice.
Anne
Mar 11, 2007 at 4:15 pm
Mr. Nyhan, I think one of the problems is that diagnosticians, when breaking the news, may paint an unrealistically bleak picture of low expectations for the child. Information about possible outcomes needs to be updated. Parents are being scared out of their minds, needlessly.
Leila, I don’t think autistic people are unaware that allies are important. This is something that Phil Schwarz, who posted above, is working on. In the meantime, if you know any PR firms who would be willing to donate their resources, kick down with some names!
Kev
Mar 11, 2007 at 7:38 pm
I agree with Anne (on both scores!). When our daughter was diagnosed we were told she would never have real friends and that people who did hang around with her would do it out of pity. We were devastated.
As it turns out, that is so far from reality its unbelievable. But I’d also wager that if you asked the average person on the street that they’d accept the diagnosticians view. Diagnosticians are setup to diagnose. That’s their expertise. We’re grateful to the diagnostician for diagnosing our daughter but we now look back at the proclamations he made alongside that diagnosis and smile and shake our heads. Diagnosticians are not experts in development, neither are they psychic.
If an autistic person had been present during our daughters assessment as a Consultant we could’ve asked questions and spared ourselves (and more importantly our daughter) months of anguish and heartbreak.
Leila - your expectations are not entirely fair. Allies should be allies. We should step in and help in the areas it is needed and then shut up and let those who carry Kassi’s qualifications talk.
Brains and Genes, Vaccine Court, Mercury, Myths, Fights (or Feuds), A Good Book: What I Did in June
Jul 3, 2007 at 8:05 pm
[…] Herbert’s and Wigler’s lectures, the one on biomarkers and the environment and the other on de novo mutations in genes, are summarized here, and whether biological topics and the environment or genetics ought to be the primary focus of autism research was a frequently referred to dichotomy in this post, which appeared on June 17th, Father’s Day. The post was entitled A Sad Story on Father’s Day: The Wright Family Feud, as it begins by citing a June 18th front page New York Times according to which Katie Wright, National Autism Association (NAA) and Safe Minds board member and the mother of an autistic son, Christian, says that she has not spoken to her father and co-founder of Autism Speaks, Bob Wright, since he and his wife Suzanne “repudiated their daughter on the charity’s Web site” on Saturday, June 2nd. The post itself contains an exchange that illustrates another dichotomy in autism discussions, between acceptance and cure. […]
Thinking Differently: Advocacy, Witness, Hope
Oct 29, 2007 at 12:50 am
[…] of changes—changes in thinking, in how disabled persons are seen, in understandinging that accepting a disability need not be a passive act of surrender—-need to be fostered in society, to make […]
Thoughts on Acceptance and Cure
Nov 3, 2007 at 1:21 am
[…] We don’t want a cure, in the November 3rd Globe and Mail, some thoughtful views on a topic often under discussion here: Some neuroscientists theorize that autism starts with a genetic glitch […]
Let the Healing Start
Dec 14, 2007 at 3:06 pm
[…] “Ransom Notes” public awareness campaign. There is a tendency for people to think of acceptance—accepting that one’s child has an autism diagnosis, that one’s child is disabled […]
Trial of Karen McCarron:Day 1
Jan 8, 2008 at 1:41 am
[…] Karen McCarron was “obsessed with”; in regard to treatments for autism, the word “cure” is often used in regard to biomedical treatments. A January 4th news article by David Mercer […]
Phil Schwarz
Jan 19, 2008 at 1:27 am
For Leila and others, here are some of my thoughts on the need for, and constructive roles for, non-autistic allies to the autistic self-advocacy movement.
Are Cure and “Eradication” Not the Only Goal?
Mar 5, 2008 at 1:44 pm
[…] talk about curing and preventing autism, but is this really possible? Is it where all the funds raised in the name of […]
“Try Not To Cure Too Much Of It”
Mar 16, 2008 at 6:01 pm
[…] 14 year old son, Isaac, is autistic. Issac has an interesting comment when the notion of “curing” autism arises: “It’s not one disorder, so the cures won’t be universally […]
Hope Starts With Acceptance
Apr 27, 2008 at 12:44 am
[…] Cure or acceptance? […]
Bonnie Sayers
Apr 27, 2008 at 2:20 am
Intersting reading, great post. I am reminded of trying to decide which way to state - chld with autism or autistic child. That is a debate that can go either way.
I have never used the word “cure” in relation to my children. Acceptance is better but whose acceptance? Theirs or ours?
Parenting Isn’t Easy, Period—and I’m Very Glad to Be a Mother
May 11, 2008 at 12:34 am
[…] Charlie on Charlie’s own terms. A very big part of being Charlie’s parents is accepting him and loving him as he is, while encouraging and supporting him to learn and […]
The White Flag?
Jun 13, 2008 at 3:03 am
[…] talked more about acceptance and hope and education—about how it’s not about finding some magic pill, but that, […]
farmwifetwo
Jul 2, 2008 at 8:43 am
I’ve always felt that I fall in the middle btwn acceptance and cure or neurodiverse and cure. B/c my goal is independance and education. I admit I have much lower expectations are much lower for the little one, the elder will navigate this world just fine. But then again, the little one shocks me daily…. and I’ve had to learn to sit back and be taught by him as much as he’s taught by me.
I no longer belong to any Autism groups. I have yet to meet one that puts parenting, children and families first. So we do our own thing, our own way and you know…. we’re muddling along. Just stay out of my way at Sept’s IEP mtg for the eldest…. I’M chairing that one… and I’ve already started setting the agenda… ::snickers:: I’m annoyed.
We don’t live for Autism, we live with it, and it’s amazing how much growth, laughter, and just enjoying life happens when you remember you have children in your house, not something that has to be “trained” (ABA) or “cured”. Yesterday watching 2 boys in the pool, splashing and laughing and having a wonderful time… reminds me that they are still little boys… WITH autism… they are individuals, therefore IMO not AUTISTIC.
Estee (TAAP) went to the conference a week ago and presented her own paper. I know she works hard for those with autism, and cares deeply… but even she presented her own paper. Nowhere on her blog did she mention taking those with autism on her board and having them present it… or another paper. That thought’s been sitting in the back of my mind lately and I hope I simply missed that piece somewhere….
S.
More Thoughts on Recovery After an Interview
Jul 2, 2008 at 6:30 pm
[…] Autism (i.e., TACA, a sponsor of the Green Our Vaccines rally). “Recovery” and “curing” autism and the intense emotions that parents and other bring to discussions about these came […]
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