On Good Morning America, June 10
June 10, 2008 by Kristina Chew, PhD
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Okay. I watched the show 3X and I’m not sure that I really want what seems to be Diane Sawyer’s version of autism as heartbreak with the screwed up face of pity.
“A challenge to the rest of us”
“A controversial group”
“Non communicative, non-emotional” (about children with more severe needs)
Acceptance is radical.
What is radical and controversial? I didn’t hear a statement of doing nothing–either from Ari or Kristina. I heard both of them mention specialized education and supports.
The statement from Lenny Schafer may have been a piece of unintended irony,
“…a handful of noisy people who get a lot of media attention but…don’t represent a broad swath of the autism community…”.
Farmwifetwo, I’m sorry, but I’m having a hard time understanding your posts. What are you saying? I’m not trying to be sassy, I just can’t make sense of them. In this second one, are you suggesting that people with Aspergers should be careful not to appear too functioning lest they lose supports? Because that doesn’t make any sense, not in the context or sense or spirit of any disability. My students with ADHD do not go around with a big old “ADHD” sign on their chests, but they receive necessary accommodations, nevertheless.
My son “appears” autistic in public–usually–but I personally never see that as a bad thing. We do not allow him to be disruptive (we remove him or distract him, etc.), but if he’s just “being” himself without being disruptive, that’s not bad or ugly. That’s just who he is. We’ve got some “bad,” but my sister does, too, and her kids are neurotypical.
It seems that you wanted them to interview someone besides Ari because he’s too “functional” or something. Have you seen Autism: The Musical? It’s a clear-eyed depiction of a spectrum of autism. Anyone who sees it sees that autism isn’t just Rain Man, ad nauseum. That these kids–even nonverbal children like Neal–have hopes, wishes, dreams, potential. GMA isn’t going to delve into that in their soundbite-driven, condescending choices of what to air. But that’s their choice. It doesn’t mean that representatives across the spectrum aren’t out there, showing the world what autism really is: Something that can’t be shoved into a box, either figuratively or literally.
I’m sorry if I’ve misconstrued your meaning. As I’ve said, I’m having a hard time understanding what you’re writing. For example, to whom are you referring when you ask how “they” can assume to speak for those that cannot speak for themselves? What people/groups lie behind all the pronouns in that sentence?
Having children in general is good, bad, ugly, sad, amazing, autism or not. For example, I know someone who presumably is neurotypical who was just sentenced to 20 years in prison for securities fraud. He’s not autistic. He’s personable, bright, has multiple degrees, lived a high life (illegally). I’m pretty sure his mother is devastated, but even prison probably won’t “cure” him. I doubt seriously my sons will ever cause me that kind of heartbreak. At least, I hope not.
As for “hating” the word autistic–it’s an adjective that describes people who have autism. Why do you hate it? I’m female. I’m brunette. If I had diabetes, I’d be diabetic. It is what it is.
Regan, I honestly had a hard time resisting the urge to smack my computer screen in a failed effort to make contact with Diane Sawyer’s face after I saw her say those things and make those weird, forced expressions of pity.
I think Diane Sawyer was bamboozled by Jenny McDumbell. “Oh, you know, these children are a massive detriment to society, besides being walking toxic waste dumps, the CDC created a generation of zombies who break their mother’s arms, but you can cure them with the GFCF diet and diflucan, and the adults don’t exist, so don’t talk to them.”
Kristina, you and Ari were perfect. You should be very proud of yourself. I also appreciate that you asked them not to video Charlie’s face. Now I hope they devote an hour to this topic so some of Diane Sawyer’s bizarre comments can be addressed.
Emily, what I am sick and tired of is that a group thinks they speak for all.
Disability is covered under Human Rights legislation…. it is to be expected that all are welcome members of society… NOBODY has any issues with that.. so why are we debating it… why do we need lobbyists??
But, not one group… from the Neurodiverse crowd to the Autism Speaks cure crowd… lobbies for services… LOTS of services. And I don’t mean the ABA/IBI lobby in Ontario… been there… done that… my kid hated them in the end and it was hard to get rid of them.
What about EA support, what about Writing with Symbols, what about modified school books are novels using Writing w/Symbols etc. What about education/travel after the children leave school at 21, instead of group homes where they have their bottoms wiped and sit infront of a tv all day.
You put people on stage for Neurodiversity that are able to walk and talk and have lives. You put people on stage for cure that will never be able to look after themselves. You use extremes.
Why not use “real” people.. “real” children. Those that need supports, that may not talk for themselves. Why not lobby for them.
Why should someone with the social skills of my eldest son.. who will one day probably be 100% independant… tell the world that my other son who will require supports all his life… yet reads, spells, does math… doesn’t wish to have the ability to have independance, marriage, sex for that matter… a job… that he would never wish to change his world or want more from it.
B/c to them… wanting to be more than he is… is a “cure”.. and we can’t have “cures”.
It’s not a cure we need… there’s nothing that needs curing in that quirky, linear, built in GPS unit, photographic memory brain of my eldest son… Nothing that needs curing in that mechanical, thinking, average, (my farmer, my mechanic) brain of the younger….
What they need is services.
And it’s time to toss the “we don’t wish to be changed, we want to be accepted as we are, we don’t need a cure” and instead say… “we need help b/c we want more access to the rest of society than we have and we deserve the right to enjoy it like every other member of society”.
Time to ditch the camps.. and do the job properly.
I think that Diane was sincere but just doesn’t understand. At least not yet. That’s the whole point of this segment and hopefully there will be more to come so that the neurodiversity concept won’t seem so foreign.
What we need is a different Playboy centerfold to come forward to talk about neurodiversity. I wonder if Pamela Anderson would be interested? (Just kidding….)
Prof. Chew, you were awesome! And I will bet that your son will be thrilled to see himself on TV.
I have posted my own thoughts on the segment on my blog:
http://rgeraldlovejoy.blogspot.com/2008/06/controversial-new-movement-autistic-and.html
Kristina, you and Ari both did a great job. It’s really too bad that the reporters pigeonholed the position as “radical” and didn’t attempt to understand it further, but hopefully this will lead more people to consider the issues differently. I wonder if the Sawyer or the other reporter had read this blog in depth, or any of Ari’s writings, because the “just a way of dealing with heartbreak” comment seemed so condescending and did not jibe with my readings of your experiences as a parent at all. Thanks for doing this, and I certainly hope you don’t get any nasty comments from ignorant people.
BTW, is there an e-mail address where you can be reached? I tried sending something to the one posted on the blog, and it came back undeliverable.
This is just too disturbing (and sad):
“I also hate the word AUTISTIC.”
And it speaks to the whole purpose of what Ari and Kristina did today. Thank you both for that!
I’ve been reading the comments on the ABC website — “Interesting” is too mild a term!
Thanks for all the kind kind words.
I was really glad that Charlie was shown swimming—-it’s his natural element and, once again, so much for “theory of mind”: He knew full well that he was being filmed. The first shot of him jumping into the water and swimming across the pool was actually the very last thing he did.
Sorry about the email—–this address works:
autismland AT gmail DOT com
Kristina–
You were wonderful, very articulate and wise.
I really like your statement about acceptance. Isn’t it ironic that acceptance (which is love, after all) of one’s child, should be considered radical????
of course, love is always radical, but that’s another discussion. . .
Our culture places great value on the “trophy child.” How nauseating, and demeaning. If our kids fall short of that lifeless ideal, they must have some condition that demands A Cure. This thinking is part and parcel of the philosophy that pathologizes every difference, and leads us to rush to medicine or surgery for every mood or blemish.
Love covers over a multitude of quirks.
And it’s time to toss the “we don’t wish to be changed, we want to be accepted as we are, we don’t need a cure” and instead say… “we need help b/c we want more access to the rest of society than we have and we deserve the right to enjoy it like every other member of society”.
One issue goes hand in hand with the other. The “must-cure” message takes away from the accomodation message. This was figured out a long time ago by Down Syndrome associations, for example. The “must-cure” message basically says that autistics are write-offs unless cured.
Farmwife, I don’t think you’re understanding, probably through no fault of your own.
Just because what we do trying to get those things pushed isn’t reported doesn’t mean we aren’t doing them. But as long as the CURE OR DIIIIEEEEE!!!!! folks have everyone’s ear, as long as everyone is hell bent on drawing a line between kinds of autistics, no one is getting very far with achieving our goals.
We’re fighting a war on many fronts. It isn’t easy. But we’re doing it, because it matters.
Thanks Kristina for the little gasp and then saying “First of all, I’m not suffering…”. I was not happy how they kept trying to spin everything around to push myths and stereotypes.
Kristina and Ari were excellent, the same can’t be said about the journalists. The editing was simplistic and tried to pin neurodiversity against treating autism. Diane was condescending, she always has that fake pity look on her face, I’m not a fan.
Farmwifetwo, I think that the things you ask about, using “You” (which assume does not actually mean me because I’m just a mom and a blogger, not an activist, per se), are exactly things that Kristina–who’s probably got more ears and eyes than most in the neurodiversity world–has been arguing for, fervently, eloquently, for a long time now. I’m guessing that she spoke just as fervently and eloquently for that reporter, but they edited to suit a pre-conceived notion and their concept of Us against Them, rather than to tell a real story with some depth. It was overall a disappointing, shallow piece, but then again, that’s why I don’t watch television “news.”
@farmwifetwo,
I kept bringing the conversation back to education, schools, and services—–also found myself being interviewed on CFRB this morning on the Leslie Roberts show and kept again trying to bring the conversation back to, ok, yes we need research and science, but there are waiting lines for schools and services; there’s not enough teachers and instructors and staff—-about how we need to look at who is in front of us, autistic individuals, and start from there.
Harder to bring up education as a “hot topic” in America, I guess (sadly).
I finally got to watch you on CBS. You looked beautiful and did such a wonderful job. It was nice to see Charlie swimming. I thought it was quite good and brought light to how many of us feel about Autism. Thank you!
There is a shortage of speech therapists at LAUSD. No SLP at the elem school this past year nor at the Middle school we are going to. I heard that you lose compensation after one year and trying to find more info on that for LAUSD and have a meeting tomorrow at the district and hope to learn more.
Tara said:
So, am I really the only one who had overwhelming desire to slap Diane Sawyer at some point towards the end?
Definitely not!
Nice job Kristina and Ari. I thought you both put forth some ideas that were likely new to many people. Unfortunately, the hosts had to comment at the end as if they were speaking on behalf of people with different ideas. It was weird.
It’s the downside of participating in mainstream media. You don’t get to control the message. Nonetheless, my family has done it on both a local and national level. Our hope has been that, when the opportunity arises, we can at least move awareness and acceptance in the right direction, even if it’s just a little movement. Ari and Kristina did this today. Thanks!
Kristina, I think we are talking about the same thing. It’s how we define “cure”. To me I just want my daughter to be as independent as she’s capable of.
You are absolutely right about the level of services in the educational setting. Why do families have to move for services? Why are our children considered too old for certain schools? Why do we have to threaten to sue to get something as basic as education and healthcare?
Farmwife Two wrote:
But, not one group… from the Neurodiverse crowd to the Autism Speaks cure crowd… lobbies for services… LOTS of services.
As a member of the neurodiversity movement, I spend many hours per week advocating for supports and services for people on the autism spectrum.
I (and others from the neurodiversity movement) have spoken at IACC meetings *specifically* about redirecting research from “cures” to research into supports and services throughout the lifespan. (The current NIMH budget of $127 million allocates $1,576,656 to research into services, and this I believe represents a change brought about by both parents, concerned organizations, and certainly by autistic self-advocates. I wrote down the numbers presented on the screen at the last IACC meeting, although they could have changed since May 12.)
I have contacted legislators and officials, I write letters, give presentations, make phone calls, research state codes in order to comment knowledgeably on legislative and regulatory proposals that affect services and supports. Many other autistic self-advocates do the same thing.
I am not heartbroken about my own autism but I *am* heartbroken when I hear of yet another autistic person being bullied, or supports being withdrawn, or about the battles parents have to go through to get appropriate educational supports for their children, or about people being put into institutions like JRC. I am not heartbroken about *autism,* but about the lack of understanding about autism, and that includes the lack of understanding of the difficulties parents of autistic children face. I am not “against” parents. In fact, I work with parents on some important initiatives such as lack of regulation of restraints and aversives, and special education regulations.
Yes, I do fit the description of autism that Harold Doherty copied in. I meet the requirements for both Asperger syndrome *and* for autism, except I am obviously less severely affected than some individuals. I have more than two of the items in all three areas, whereas the criteria only require one each from B and C. Some of my conditions are disabling but overall I am able to function well enough to live independently and to be employed.
As a member of the neurodiversity movement, I advocate actively for supports, services, ending abuse, and other things that we need to live lives of dignity, safety, etc. I don’t claim to speak for any particular person but I do try to advocate with the largest number of people in mind, as do many other advocates, including Ari Ne’eman. We do not just advocate for Asperger’s autistics or a certain “level” of autism. Don’t be mistaken about that. Our concern, as yours, is for people at every “level” of autism (remembering that each individual may or may not have traits commonly associated with a certain “level of functioning”). We do as much as we can to assist autistic individuals and families with autistic members whenever possible, and on a societal level we are working to change both attitudes and structural inequities.
Neurodiversity activists join with parents to help change laws, develop appropriate regulations where none exist, start support groups, do respite work, to name a few of our efforts. The Autistic Self Advocacy Network has been instrumental in pushing for legislation in multiple states: legislation for supports and services, anti-bullying laws in schools, which directly affect children at all points on the autism spectrum, and many other initiatives. ASAN partners with AASPIRE, the Academic Autistic Spectrum Partnership in Research and Education, in order to develop and perform research projects that are relevant to the lives of autistic adults, in order to effect positive change for people on the spectrum.
The last thing we do is just sit around talking about it.
Thank-you, Paula … ever.so.much.
That was well-said. Thank you very much.
Cliff
Bravo again, to you Kristina & to Ari too. Many great points made here. Going to go read what’s in the ABC comments (if I can stomach them!).
There are over 300. Worthy of a thesis…..
I too was disappointed in the saying that we’re non-communicative and non-emotional. I have had these things assumed about me, spoken about me as if I wouldn’t understand (and as if it would be okay even if I didn’t), and that is what is heartbreaking.
It is frustrating that people often think that being against the elimination of autism means that we’re against services. Heck, I’ve been battling it out with the school just for a freaking assessment, and that’s no easy feat when you have limited spontaneous speech at your disposal (30-minute IEP? You’ve got to be joking). It has been through the Aspies for Freedom site that I found out about regional centers and am on my way to gaining skills for independence. Had I not been involved in this community, or if my parents had believed there were distinct dividing lines between high and low functioning and that I was on the high side, then I wouldn’t be on my way to getting these needed supports, and wouldn’t have even been able to articulate my need for them through writing, much less speech.
Something interesting about the complaint of an advocate’s functioning level, is to examine the reactions of some (noisy but few) autistic advocates who get frustrated with whether the functioning level is representative.
I mean, some prominent activists such as Ari Ne’eman seem to be less significantly disabled than I am, whereas another prominent activist as Amanda Baggs is more significantly disabled than I am. Yet should I complain that neither is representative of my functioning, needs, or interests because of this? I don’t think so.
True, their needs and interests and individual backgrounds differ from my own, but that’s the thing about good activists: they listen to and respect the needs of a broad variety of the group of the people they advocate for, rather than imposing their own personal experiences and needs onto the whole group. Every autistic person is different in a variety of ways, and so a good autistic activist (whether themselves autistic or not) takes this into consideration already.
Anyway, I think you both did a wonderful job of consicely getting your points through, which is always hard to do in such a short piece that gets edited down so much, particularly with the commentary that followed.
While I cringed at the comment of acceptance being a way to “justify” heartbreak or whatever, I still have to keep reminding myself that, especially as a media person, she must have been exposed to an awful lot of the pity-type images of disability, and from that frame of reference, it must be extremely difficult to make a full assessment of the point of view of disability advocates.
Despite the negative commentary, I can’t help but feel that a page is gradually increasing its momentum and getting ready to start turning.
As some think in pictures, or words, I think in rhythms, motion, music, patterns, and in keeping up with both the number, focus, and quality of reporting about autism and neurodiversity, this is the point where we’re scratching at the surface. Sure, at this point, there is the unfortunetely inevitable over-simplification (sometimes to the point of reductio ad absurdem) in the media, but while the full focus of autistic advocacy (education, supports, equal employment opportunities, better info. for parents of newly diagnosed kids, legislation for healthcare and education, etc.) still remains mostly not well acknowledged to the public eye, there is this point approaching. Now that people see us and our thoughts, they are increasingly focussing their lenses and tuning their eyes to understand more fully what it’s all about.
People are starting to see us. Not only that, but they’re seeking to understand.
I have to say I had tears in my eye, and stimmed so excitedly in the time leading up to the segment, for I feel that at this moment, I am witness to a history developing, and am myself opened enough to run my fingers along the premature film that, despite the overwhelming urge to pull out and take a look, slowly replace the covering and tell myself, a tear down one eye, that same thing I’ve told myself every day of my life since I began school: “Soon.”
And it’s time to toss the “we don’t wish to be changed, we want to be accepted as we are, we don’t need a cure” and instead say… “we need help b/c we want more access to the rest of society than we have and we deserve the right to enjoy it like every other member of society”.
Actually, the goal is to achieve both.
@Melody, very much agreed!
Jim and I were talking about all of this as historically significant—-
I kind of felt like there was some cringing going on about the very word “neurodiversity” and what the implication of it are. I really like Ari’s comments about civil rights and about seeing autism rights in a much broader context.
OK, so I just watched the clip.
I can’t help but continue to agree with the neurodiversity side. I think the cure autism now side of it only gets one aspect of autism, the most negative aspect of it and that can’t be helpful to the children and adults who have it.
Also the reporters seemed a bit scandalized and puzzled. CAN and Autism Speaks has their perspective out all the time, painting the most negative picture of it. How can they say that autistic people don’t have feelings? How can they KNOW that?
No, the neurodiversity side makes more sense to me. I think services and educations of people with autism and the rest of society is needed more, but it’s not just autism that most of society has a negative view of.
It’s all sorts of forms of being different. It’s a lot better and healthier to try to understand people from their perspective instead of one from the sort of doctors seeking to make a quick profit of people’s pain when it doesn’ have to be that way.
I think of neurodiversity in terms, as you write, of “all sorts of forms of being different”—not only autism. It’s not as simple (I think) as “celebrating difference,” though of course that is a part of it; it’s also about understanding that when people do something different or “odd” or “bizarre,” this might be for a reason that’s quite unlike when is “normally” assumed.
Exactly. That makes total sense to me. More than shocking a person for headbanging does then trying to figure out WHY they are doing that and to help them find other things to do to help them.
That just seems logical to me.
Also it seems like everyone is neurodiverse since everyone’s brain works differently. I have a unique condition called synesthesia which allows me to taste, smell and percieve music based on colours based on each key and I associate people and abstract concepts with scents that don’t exist.
In the middle ages I would have been doomed.
I think the concept of normality needs to expand to include more people.
Color’s very important for my son—-color words were the first he learned and a lot of his expressive language involves color words. And taste, smell, and touch seem to be a big part about how he interfaces with the world: He like to smell his food before eating it; when we were more in “only appropriate behavior!” mode, we used to try to stop this. He’d get upset and why not? He was trying to figure out what he was eating and we were interfering……..
Headbanging is (serious understatement) very tough. It helped me a lot to change from seeing it as just this terrible, awful, horrible thing (it is) but to try to think about why Charlie was doing it. It was not because he had no idea that it hurt, or that he couldn’t feel the hurt. He was desperate to communicate and didn’t have the words to tell us this. Of course we had to get him to stop but the most effective thing has been to teach him more ways to communicate—and to try to understand the different ways he communicates.
” taste, smell and percieve music based on colours based on each key and I associate people and abstract concepts with scents that don’t exist.”
You’re not in Switzerland, by any chance, are you? If so, I’ve written about you before. Do you taste intervals?
I just watched the story on-line and have begun reading the comments. One thought that keeps bugging me is symantics. The gentleman who spoke about the importance of finding a “cure” then turned around and said, to make life easier and more productive. Ok…you are either curing or you are not…there is no in between. The neurodiveristy movement is not advocating ignoring. They are saying that the focus and money should not be about fixing, but about making their lives better. I have two children who some might consider a “moderately severe”. I don’t believe there is a cure. Like there isn’t a cure for down syndrome or dyxlecia. But I do believe there are therapies that give significnalty change their lives for the better.
Am with you on this, Tracey—-sometimes I think the whole notion of “cure” is a sort of buzzword that sounds like what should be said.
To wish for a cure for neurological conditions in some cases isn’t much different than wishing for world peace for for the Chicago Cubs to win a world series. Acceptance does make more sense as long as we temper it with vigilance to see if anything we can do on our part will help with symptoms. IMO, to disregard things like diet changes, avoidance of certain chemicals, avoiding artificial food additives, detoxing of heavy metals, etc which can “turn down the noise” or prevent adverse reactions is right. Those blessed with the responsibility to care for autistic children should never give up on finding ways to improving their child’s symptoms. That doesn’t mean you’re looking for a cure, that means you’re going to do your part to stay up to date on the latest findings and research, to consider approaches which wreak of “common sense” in regards to eating a healthy diet and avoiding the chemical assault we’ve been under for the past 30 years (See bodyburden.org for more). It also means avoiding fluoride, chlorine, and a host of other harmful chemicals that can adversely effect those with compromised immune systems. To accept that we live in a toxic world which causes havoc on our health (and sometimes leads to disease) is not enlightenment, it’s denial, and I’m happy to bring this to this boards attention.
Being happily “blessed with the responsibility to care” for my son, I’ve learned that not seeing his disabilities as a loss and a deficit changes things profoundly, and makes his strengths and talents clearer, and shows us how best to teach him. The best cure for wishing for “recovery” is to see how a child can learn and change and grow, thanks to the hard efforts of parents and teachers every day.
Man, maybe it’s me, but between a lot of comments there seems to be this zone that is missing–that acceptance means “giving up” or “dealing with heartbreak” and doing something has some kind of necessary relation with rejecting western medicine and detoxing.
I do something, every day. I teach and involve Eleanor in the life of the community and seek to give her as many opportunities as I can for choice, a rich life within her terms, and sincere appreciation that she is a valuable and important person. She’s come a long way and if I am really honest, is probably the most genuine person in the family at this point.
I suffer because of the politics of this diagnosis, and the future, which is more dependent on other people and systems. But right now, because of Eleanor herself–uhn-uh, no way.
Nicely said, Regan.
I’m late in commenting here.. I didn’t get to see this as it aired, but learned about it on another blog. I was so happy to see this in “mainstream” media – finally! I was also happy to see that you were in it, you are a wonderful spokesperson for parents who accept their child’s autism. To think that they consider “neurodiversity” to be something new!