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Autism Vox

Guess Who’s Speaking on Oprah?

by Kristina Chew, PhD on April 3rd, 2007

Ubiquity is defined by one source as “presence everywhere or in many places especially simultaneously; omnipresence”; according to another source, ubiquity is “the state of being everywhere at once (or seeming to be everywhere at once)”—sort of like Santa Claus on Christmas Eve, I guess one might say.

It has not even been one week into Autism Awareness Month and already there has been quite a bit of “presence” and “awareness” about autism in the form of Autism Speaks, and in particular in the person of its co-founder, Suzanne Wright. Having been on the Larry King Show on the 22nd of March, she will make another TV appearance two weeks later, on the April 5th Oprah. Mrs. Wright’s daughter, Katie Wright, and some of the other autism mothers in the Autism Every Day video will appear (go here for more details).

The Oprah show is entitled “The Faces of Autism”; many parents, professionals, and others have been leaving messages. It would be well to see their faces on TV in addition to that of the Wrights (who one can, of course, see readily via the Autism Speaks website, the April 1st New York Times Evening Hours column, etc.). Some autistic teenagers are to be on the Oprah and, it seems to me, it would be well if more of the guests were autistic persons.

Nonetheless, I am not surprised about the roster for the upcoming Oprah. I addition to, of course, the Autism Speaks website, the influence of Autism Speaks can be felt extensively over the web, its light blue puzzle piece logo prominently affixed to (for instance) the site of the recently launched Interactive Autism Network. It just occurred to me that the middle column on this blog is of a very similar color to that Autism Speaks puzzle piece, and I wish to point out that I did not choose that color with any thoughts of said puzzle piece in mind; I chose light blue because that is the background color for my Autismland blog and the color reminds me of the ocean and a clear blue sky, both of which appeal much to Charlie.

In the upcoming weeks, the colors and design of Autism Vox will be changing (I’ll leave you to guess what colors I chose……). Autism Vox will be quite the same, just with a different look:

Sometimes a little change, of colors, faces, presences, can offer a novel perspective.

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POSTED IN: Autism Organizations, Media, Weblogs

42 opinions for Guess Who’s Speaking on Oprah?

  • brockton
    Apr 3, 2007 at 11:29 pm

    Dang, when I read the headline I was momentarily hopeful it was you who had been invited onto Oprah!

  • Kristina Chew, PhD
    Apr 3, 2007 at 11:31 pm

    That’ll be the day! Thanks much for the thought………….

  • Kassiane
    Apr 4, 2007 at 12:37 am

    You’re too smart for Oprah. She’d be lost…

    I’m more than annoyed with all the hysteria already, and it’s the third day of the month. And I can only paint so many tshirts in a day (most recent says “enough “AWARENESS”. Try ACCEPTANCE”. It’s pretty good if you take my crappy fine motor into account).

    I think it should be a requirement that if they do poor me shows like this one (I saw it referred to as ‘the heartbreak of autism’) then they should have to do TWO where all the guests are autistic, and just sit there, shut up, and listen while we talk about the heartbreak of closedminded, judgemental mass media hysteria.

  • Monika
    Apr 4, 2007 at 2:07 am

    When I read the posting’s title, I also thought it was you! That would have been too good to be true. Since I am in Germany, I wonder if I can see the show on the Internet or read a script (as with the Larry King Show). Otherwise I would very much appreciate a little summary and report. If there are autistic people on the show, maybe they can finally counteract the usual suspects? Every time I read about what’s going on with “Autism Speaks” and all the hysteria in the U.S. media, I am quite surprised how fast this took off and developed. We don’t have this in Germany yet - and I hope our media doesn’t get infected. Not that I wouldn’t appreciate more coverage, because in German media there is almost none about autism, but I wouldn’t want it the “Autism Speaks” way…

  • Kristina Chew, PhD
    Apr 4, 2007 at 2:16 am

    I had best be more careful with my titles! It sounds like there may/will be autistic children/teenagers on the show but not adults (as far as I can tell). Yes, hysteria is a good word to describe the situation with the media here—–if I may ask, how is autism described in the German media, when it is?

    Best wishes–

  • julie
    Apr 4, 2007 at 7:27 am

    How sad that it is alawys the same people and the same point of view on all of these shows. Autistic adults are the experts on autism.

  • Caroline
    Apr 4, 2007 at 8:29 am

    I wish Autism Speaks would focus more on educating public on:

    *acceptance of people with differing abilities - we can all contribute to society

    Developing programs for:

    *best practices for inclusion in society in childhood, teenage years and adulthood

    *much needed programs such as summer camps, after school programs, ‘real-world work’

    Fighting for reforms in therapy and education costs, availability and quality.

    Here is where you can actually do something positive. Write a practical book on what has helped Charlie to mature and thrive.
    Have it be a collaborative effort with adults with autism.

    Do your own video with the wonderful classroom teachers at Charlie’s school.

    I do not know Suzanne and Katie Wright, but I think they would be very receptive and gratified to know about the strategies that have helped Kassianne and Charlie and the many other children here.
    Many of your readers Kristina are looking for help for their children, and do not care about autism wars or the color of a website. Lets get practical.

  • Autism Vox » Autism Is Global
    Apr 4, 2007 at 8:38 am

    […] it is and what to do about it—-everytime one turns around, gets on the internet, watches a popular TV show. By “autism is everywhere,” I mean that autism is a global phenomenon. Even though […]

  • landonsmom
    Apr 4, 2007 at 10:43 am

    If only a parent, like myself, would win the lottery or something and then we could all do a “real” show on autism…..anyone want to take a chance?

    Maybe we could start a lottery pool for autism?

    Just kidding, but really, where did the days of reporting the real story go to? where are the reporters who aren’t concerned with being politically correct? or aren’t afraid of stirring up a little controversy?

    I thought Oprah was a pretty gutsy lady but I guess she will get on the train with the rest of them involved in this hysteria and show a one-sided point of view of autism.

    I would like everyone to know that having a child with autism is NOT the end of the world, it is devastating when you first get that diagnosis, but you can move on from that feeling. I guess it is all a state of mind for some individuals.

    I wrote into the Oprah show, she only asked for parents from the Chicago area, but I really wanted to share with her how different it is from state to state and that the resources just simply aren’t there for many families.

    Guess what? I didn’t get a response. Go figure!

  • landonsmom
    Apr 4, 2007 at 12:11 pm

    I hope I don’t or didn’t offend anyone by my “state of mind” statement. I feel the need to clarify….for some their personal experiences will influence how they handle a dx of autism and the subsequent hurdles they must jump over with their child in regards to the school, community, etc….we all handle this dx differently because of the mind set we have or the circumstances we are in.

    When I listen to some of the moms on the Autism Every Day video, I hear some self-pity and despair…maybe they were having a bad day they were taped, I don’t know…but I don’t want people to think that it is like that all the time.

    In our family, and there are 4 kids, 2 adults, we have a lot of laughter and fun and I would like that to be represented as well as the “darker” side of autism.

  • julie
    Apr 4, 2007 at 12:14 pm

    I also would love to see the other side of the story reported. I think it is naturally to go through the devestation as a parent when you first hear autism. Then you move on and realize that there is so much worse than having a child with autism. I would love to see more autistic adults and families of autistic children represented that do not feel despair everyday and see the beauty in every child and adult no matter what their challenges may be.

  • Kristina Chew, PhD
    Apr 4, 2007 at 12:31 pm

    Hi Caroline, I’m working on the book as I type——of course what colors etc. of a website matter little but the color blue always makes me think of Charlie and his love of the ocean (”blue ocean”). Trying to see the world as he does has made me extra-attentive to things like colors and textures and how we respond to these; it was a coincidence that one his first receptive programs was for color words, and that he learned these quickly.

    Landonsmom, your “state of mind” statement is more than welcome—–for myself, what I like most to hear about is how people get through the day, put out small fires, with the occasional looking ahead to the bigger picture. My main critique of the Autism Every Day video is that it presents difficulties (child running away) without making enough mention of solutions that we have: A child can be taught not to do this, to walk on the sidewalk.

  • Caroline
    Apr 4, 2007 at 2:41 pm

    Kristina!

    I realize my comment sounded harsh - it was not directed at you and the other readers here persay: I just think there is so much need for the actual tools to help people, especially the families in “The Video”. I am very psyched about the book and the idea of a teaching strategy on teaching children not to run away.

    (But why do they do it? are they in very real pain at the time? It certainly appears more than ‘behavior’ to me.)

    Autism Speaks org. certainly has some dubious influences behind the scenes, but I do think the Wright family really wants to make the world better for all of us. They stepped up to the plate where so many others with power to promote acceptance and understanding by merely speaking out, were silent.

    All I meant in my comment was “lets shape the behavior” of Autism Speaks - haha - and you are in a wonderful position to do that. (with your perspective and experience)

    I would love to see a television program along the lines of Supernanny with practical solutions for educational strategies, etc. If the numbers are as high as the CDC says, I think it would be a runaway hit!

  • Kristina Chew, PhD
    Apr 4, 2007 at 3:07 pm

    Shaping their behavior …. hmmmmmm … now should we try that by doing a backwards chain or prompting, maybe a little HOH………

    SuperTeacher show?

  • Kristina Chew, PhD
    Apr 4, 2007 at 3:33 pm

    In the past weeks it seems that Autism Speaks has been connecting their goals/mission/interests more with biomedical treatments and theories of causation; mention of education and therapy seems not have been as prominent. For me, it has been in teaching Charlie and seeing him change (often in minute ways) before my eyes that has given me the most and best hope; teaching done right can effect a kind of lasting change (in the parent, too). And I think many of us can create these changes via simple tools and teaching strategies (as I try to outline from time to time here)—-a lot can be done with little (as in $$).

    As regards the running away—–well, Charlie did it for the thrill of running, for one thing (a sensory component)—-it was just that he did not seem to understand “stop.” And he did it for the response in us (for attention, some would say)—my learning to respond in a calm manner at those moments helped a lot (I at least felt less foolish in front of any bystanders). We taught Charlie to understand “stop” in safe and controlled setting before trying him with it on the sidewalk (it took 2 people to do this).

  • Kassiane
    Apr 4, 2007 at 3:35 pm

    *snort*

    Backwards chain. For sure. And they definately need combined social and food reinforcers…if they’re good they can have a bagel with their friend…

  • Kristina Chew, PhD
    Apr 4, 2007 at 3:35 pm

    We could write Goals and Objectives for them.

  • Daisy
    Apr 4, 2007 at 3:50 pm

    My own small effort at publicity is titled “The Many Faces of Autism”. I put up the showcase at school yesterday. It’s very simple: pictures of people with autism and books about autism or featuring characters with autism. Awareness being the lowest form of knowledge, at least it’s a place to start.

  • landonsmom
    Apr 4, 2007 at 3:57 pm

    Maybe Autism Speaks needs their own IEP……what a meeting that would be.

    Kristina,

    I share your thoughts on hearing how parents put out those “little fires” and deal with the day to day stuff, that is what life is all about…for Landon, running into the street was an issue for several years and we kept a close eye on him and made sure his therapist were all aware of this problem so it could be addressed in PT, OT and speech, (teaching across environments) and finally he GOT IT! and now he stops me at the streets edge to check for cars! LOL! the irony of it!

    Anyway, a place where we could all share those strategies and ideas would be great, right now I would love a way to get him to lift the seat when he goes to the bathroom!

  • Liz
    Apr 4, 2007 at 5:32 pm

    Kristina and friends, there’s a new video-sharing service modelled on YouTube called TeacherTube

    http://www.teachertube.com/

    No it doesn’t have the reach of Oprah but if enough short videos were posted showing learning and doing with autism, maybe a dent….

  • Caroline
    Apr 4, 2007 at 6:15 pm

    So many great ideas!

    Liz thank you for teacher tube

    Kristina, written goals and objectives to Autism Speaks should seriously be considered - I’ll be happy to help

    landonsmom - there is a product called method wipes that can be flushed - the packaging says “ever feel like certain people using your toilet could use a little…coaching?…without toxins…they smell like spa. yes, spa”

    again, sometimes its not all autism…its just being a kid.
    ‘The Many Faces of Autism’ sounds like a great exhibit.

  • Estee
    Apr 4, 2007 at 7:04 pm

    I’ve already emailed Oprah. ;)

    It’s to be expected. Not welcome, but expected. The right thing to do next is for her to interview some autistic adults.

  • Kristina Chew, PhD
    Apr 4, 2007 at 7:43 pm

    Thanks for the TeacherTube link!

    Would love to know the reaction to The Many Faces of Autism, Daisy and if you hear anything from your email, Estée.

    I gather that some others with a different view of things attempted to get on the show, too.

  • Chris
    Apr 4, 2007 at 9:41 pm

    I e-mailed Oprah about this along time ago when chicago had a huge conference. I did not get a responce either—shocker.

  • Chris
    Apr 4, 2007 at 9:49 pm

    I e-mailed Oprah about this along time ago when chicago had a huge conference. I did not get a responce either—shocker.
    I would love to share with her the growth and love, and the hummor, we are all getting as a family.
    We have our struggles with finding resources, and the loop holes of the politics surrounding autism. But we are also a family and we live everyday, and learn everday. We laugh most days, we struggle at times, but most times life is life, and it is great!

  • julie
    Apr 4, 2007 at 9:54 pm

    Chris,
    I could not have said it better myself.

  • Chris
    Apr 4, 2007 at 10:00 pm

    ohh and i am going to check out the teach video web sight

  • Monika
    Apr 5, 2007 at 5:22 am

    Hi Kristina,

    German media focuses very much on autistic people with extraordinary abilities. Children with severe Early Childhood Autism (like my son John) are very seldomly portrayed in German media…

    Greetings from Europe!

  • mumkeepingsane
    Apr 5, 2007 at 8:15 am

    I can’t even bring myself to watch Oprah today. I wanted to blog about this but couldn’t even put my pain and frustration into words. That’s my child they’re talking about, my child they’re reducing to a series of negative behaviours, my child they want to “cure”. I cried when I saw the advertisement for this show (and I’m not an emotional gal).

    I’m planning to email her but am sure I won’t get a response.

  • Laura Cottington
    Apr 5, 2007 at 10:11 am

    Wow, Autism Speaks and Oprah can get a chat going! Been out of town a few days and came back to find out about Oprahs show being on already, just yesterday. I put a quick blurb about Oprah on my post and saw Harpo had visited my site early this morning. I am actually hoping it wasn’t from the link, because I too sent an e-mail two weeks ago when I heard she was thinking of doing a show, and had asked that she portray it from the side of autistics, and that she should perhaps have a child, teen and adult with autism on the show to have them share “in combination” with the parent, for those that would need assistance ( not soley the parent’s view). To no avail, the blue pin people used their financial influence to get in the door first! Rrrrggg. Anxious to see how it is all portrayed today.

  • Kristina Chew, PhD
    Apr 5, 2007 at 10:57 am

    The task ahead is, I think, to figure out how to keep on getting a different portrait of autism out, whether on Oprah or not— I think a positive portrayal could most certainly have been possible!

  • Kristina Chew, PhD
    Apr 5, 2007 at 12:23 pm

    So far it looks like Oprah “many faces” are more of the same—-an Autism Speaks VP is shown on the website with her daughter—–

  • Oprah's Autism Special « The Life That Chose Me
    Apr 6, 2007 at 4:26 pm

    […] Head over to Kristina’s site for an the Oprah show overview. […]

  • Kristina Chew, PhD
    Apr 6, 2007 at 5:31 pm

    Thanks, Monika—-another question if I may ask: What kinds of schools or educational resources are there for a child like John? Great to hear from you!

  • Autism Vox » Play Date with a Friend; or, What We Need
    Apr 19, 2007 at 1:46 am

    […] legislation for $350 million for treatment and support for autism in Washington. Autism was on Oprah. Autism was on the CBS Early Edition. There are more and more books and films. There is a […]

  • Autism Vox » Where Would You Choose to Live?: Q & A with Mom-NOS
    Apr 28, 2007 at 2:18 pm

    […] we bought thinking we’d live in it for thirty years, just like that father at the end of the Oprah show on autism who talked about having to sell his house and move in with relatives and how he just […]

  • shana
    May 6, 2007 at 2:39 am

    i have a eleven year old daughter with autism. even though i know she needs me to learn, after eleven years, i truly believe i need her, more than she needs me. i would not change a thing. im not saying its not been hard. but she is worth every worry,heartache, tear.. for every one of those, i get a thousand hugs, kisses, smiles, and love. i was given an angel that needed assistance. turns out she has taught me more than i could ever teach her.through our life were taught to look from the outside in. ive learned autistic children look from the inside out. and what they see is totally diffrent from what our eyes see. she has taught others as well as myself patients, understanding, unconditional love, true dependence. and that alone we all know is a awesome feeling, knowing that your child trust you even though she doesnt even understand what is going on. i thank god everyday for my daughter. i do believe this world is a better place because shes here.

  • sekou
    May 23, 2007 at 6:44 pm

    Big O,je t’informe que j’ai donne ton nom a ma fille qui est nee en Novembre 2006.S’il te plait Oprah repond a mon email,je souhaite te rencontrer pour te presenter l’enfant.
    Que Dieu te benisse a jamais

  • Katie Wright Does Not Speak for Autism Speaks
    Jun 2, 2007 at 12:13 pm

    […] wonders if some eyebrows have been raised in regard to Katie Wright’s statements regarding vaccines as causing her son’s autism and her references to using biomedical treatments? ASD, Aspergers, autism, […]

  • Brian Noakes
    Aug 2, 2007 at 5:27 pm

    please note correction on previous comments SONRISE.ORG should actually beSON-RISE .ORG sorry for the error

  • charlotte Clements
    Sep 19, 2007 at 12:22 pm

    Could you please send me Jenny McCarthy email
    address.
    About Autism

  • charlotte Clements
    Sep 19, 2007 at 12:24 pm

    please send me Jenny McCarthy email address
    she talk about

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