Susan's Blog

Thursday, April 5, 2007

Oprah Speaks

Oprah covered autism today, as she said, her “first time ever doing a show on this subject.”
Hmm, where has Ms. Winfrey been all this time? Didn’t she get the memo?

1) If every twenty minutes a child is diagnosed with autism, is it time that we adjust our definition of “normal?”

2) Why is it, when people speak on talk shows about autism, the emphasis always is on what the parents have had to give up, instead of what they have gained? As if we were all promised one particular kind of life. I understand that everyone has the right to feel bad, and complain, and grieve for the life they are not getting. God knows I do it often enough, no argument there. But it is also possible, over time, to move one’s focus, and reflect, instead, on how autism is the road given, and that there are no guarantees in this life. (See this Sunday’s April 8 Boston Globe Magazine for more of my thoughts on this point.) And that this particular road is rife with potential, happiness, and growth.

3) I wish I had never said to little Ben, five years ago, that Nat’s “brain is broken,” in order to explain autism. I heard it on television just now. “His brain is messed up,” said only sibling about his autistic brother. Why is there so little thought given to “different wiring,” and acceptance? Is it that our society is so hellbent on everyone fitting in and being perfect? Every kid is gifted, every kid is high-functioning, every family is trying to keep up with the Joneses, and so when something overtly different comes along, it feels like lives are coming to an end. I really believe there is too much emphasis on everyone being the same. If you are a boy and you don’t play sports, you’re a nerd. If you’re a girl and you don’t like pink, you’re a tomboy. If you’re a boy and you do like pink, you’re gay. Everyone is so quick to sum up and dismiss. Autism and quirkiness become just another way to sum up and dismiss: “Lost Cause.” “Weird kid.” “In his own world.” “Tragedy.”

4) The “Can you just…” part of the show was excellent. Parents talking about how others judge them for their kids’ behavior. Why are we all so f***ing judgmental of each other? I actually loved hearing Alison Tepper Singer advise the public to say simply, “Do you need help?” Rather than scorn and scowl at us. Difference is so hard for us to see and tolerate. But you know what? Tolerating difference is supposed to be the American way, although certainly every single different group (immigrants, blacks, women) has had to fight for their rights. So now it is the auties’ turn!!! So get with it, America!

5) What is amazing to me is that sooooooo many families are getting home therapies and supports, across the country! Things have improved in that regard since Natty was little and there were few providers anywhere. With the exception of what the May Center provided when he was 5, I had to make it all up, hire college girls and train them the way I saw fit!

6) Early Intervention again! Quit hocking me with the Early Intervention! Just do this early enough and your kid will be mainstreamed! Oh Joy! The Mainstream Classroom is the new Promised Land. But then you go neurotic trying to intervene enough and correctly. And if your kid does not get mainstreamed, did you fail? Did he? How does one interpret success and failure here? Nat is living proof that you don’t need to worry so much about a kid not getting help “in time.”

7) I like the way the show ended with every single parent talking about the gifts their autistic children have given them! “He has made me more spiritual,” “He has made me look outside of myself,” “He takes people just as they are.” “He has given me someone to love way beyond what I ever thought possible.” Amen.

8) I watched the show with Nat — ironic, eh? — and wondered what he thought of it. I said “Do you know what autism is?” He said, “Yes.” I told him he had autism, and that that was fine. And later, at one point I said that I love him, I smiled at him, and said, “It’s not bad like that, Nat.” He smiled back at me.

I give her a B. I think she tried to emphasize hope and good efforts, she tried to steer clear of the cause controversies, and she did not go for too much melodrama. The B is because she had no examples of older kids and no autistic people as guests. Not sure what Nat thought, but he is still sitting in there looking happy.

16 comments

I caught the very end when everyone was mentioning the gifts…Very telling that the first thing the one child communicated to his mom was “mom sorry.” What does that say?

— added by Mekei on Thursday, April 5, 2007 at 5:08 pm

I know! I hope the only thing Nat is sorry about is the time he nearly gave me a heart attack when he disappeared from a dinner party, only to then come climbing back in their window! And then of course it is our fault anyway for losing track of him!

— added by Susan Senator on Thursday, April 5, 2007 at 5:14 pm

You see that Larry King special. You didn’t really miss much. It’s mostly the Autism Speaks people and people from that movie they made. They act as if every aspect of their kids life is a tragedy. They little if anything positive to say about the kids. again the focus was primarily on kids under six, with barely a story about older autistics like myself. (I’m 18).

— added by From Iowa on Thursday, April 5, 2007 at 6:01 pm

Mainstreaming is not all it is cracked up to be but you need to use what is available and hope you don’t get a self-righteous, bible thumping teacher from hell…. I think what Oprah did was raise awareness about what is going on behind the doors of autism houses. If only one person does not look at a kid with autism with a look of horror or disgust it will have been worth it. I will forever remember the day I took my son (age 3 at the time) to the grocery store and he had a complete meltdown at the checkout. The cashier said to me ‘looks like someone could use a nap’ and I glared back at her and snapped ‘damn right I could use a f*cking nap, I haven’t had a full nights sleep in 3 and a half years!’. The store got REALLY quiet right about then…

— added by lizziehoop on Thursday, April 5, 2007 at 6:25 pm

I don’t know about the rest of you, but my own little autism universe (online support groups, local “real life” support groups, playgroups, autism mom friends) is positively vibrating from being so abuzz about this show. I have it recorded, but I haven’t watched it yet (my autie is 3, so no mommy tv until after he’s asleep). Some of my autism mom friends have been in tears over this show. I am almost afraid to watch. I agree with lizziehoop (good for you, btw, for having the cajones to speak up in the grocery to that cashier) that even if it was the whole autism-is-a-tragedy angle, it does help with awareness in the bigger picture.

When are YOU going to be on Oprah, Susan? That’s a show I really want to see!! 🙂

— added by ASDmomNC on Thursday, April 5, 2007 at 7:15 pm

Wonderful insights. I’ve been thinking about “normal” lately because I’m working on an essay for a group project. I agree, we need to adjust our perceptions of what that is, and not confuse it with perfection. Now that Oprah is interested in the topic, maybe you’ll be on the follow-up show! I’ll drop them a line on their website requesting you. Maybe everyone here who likes what Susan has to say should do the same.

— added by Carolyn Murray on Thursday, April 5, 2007 at 7:32 pm

I am glad that Oprah did a show on autism–it was long overdue and given her wide audience, if it introduced the topic to thousands who never gave it any consideration then awareness was raised. As a mother of a child who is absolutely perfect “as is,” in spite of her autism diagnosis, it does pain me to see other parents wish for some ideal that is nothing more than an illusion. Every day I connect with Emma in “our way” and it is fulfilling and life affirming. I cannot imagine another Emma. Every day she surprises me and teaches me something new. Although I am the caregiver, I often feel like the child, constantly having to slow down and really watch and listen so I can learn and understand.
Back to Oprah… I do think her producers could have researched the subject more rather than calling the producers of the latest documentary getting the hot buzz at Sundance. It felt rushed to me. But I’m still a big fan of Oprah and still thankful she finally did something.
Monique Calello

— added by Monique on Thursday, April 5, 2007 at 9:08 pm

Regarding your #5. Don’t be too amazed. I live in one of the top 50 sized metro areas and we are not getting supports. Not from the schools and there are few professionals we can hire privately.

I am struggling to coordinate a Verbal Behavior program for my son. We are his therapists. For awhile I did hire college students but we can’t really afford that anymore.

But I ask you–how insane is it that it is up to us parents to hire and train workers to work with our children. I’m not sure my degree in computer information systems qualifies me to teach them how to do discrete trials!

My son is making good progress but I can’t help but be frustrated about how little support there is AND how little support there is for the families that don’t have the financial means hire consultants or travel across the country to work with the elite institutions. There isn’t a day that I don’t wonder what kind of progress we would be having if it was real professionals working with him and not his parents!

— added by Mom without a manual on Thursday, April 5, 2007 at 9:38 pm

Mom Without a Manual, oh boy do I agree. I am trying to get a communication program going for my son, and I actually have made some tiny headway after feeling like I had to channel the personality of Ultra Pushy Mom. It was the only was to even get the eval scheduled. In my state of Florida, they deny any speech or language services if your abilities to communicate are considered on par with your “mental age”. Since my son has a the label of Profoundly Mentally Handicapped, he doesn’t qualify for speech/language. How can we assess his mental age accurately if he can’t communicate you ask? Well……there’s the rub.

— added by Carolyn Murray on Friday, April 6, 2007 at 7:15 am

As a mother who does not have an autistic child, I found the show interesting and enlightening. I also thought it odd that they only focused on little kids and wondered, where are all the grown autistic folks…I will now say in the supermarket, library, playground, pharmacy, or wherever…”can I help you?” and I will def. not look with judgemental eyes. I will teach my children to be more accepting and I will continue to enlighten my self, friends and family! I salute all of you and thank-you for letting me into your lives!
MommainPhilly

— added by Anonymous on Friday, April 6, 2007 at 11:25 am

It was bittersweet watching that Oprah show. Sweet that we are finally getting ongoing National dialogue, but bitter that it’s still Autism 101. I think that the picture Autism Speaks and their media Army paints is strictly for the purpose of in your face fundraising for research and we just have to stomach that rehash. I also hate the focus on why instead of what are we going to do on an ongoing basis. Why didn’t they give Floortime, RDI and ABA a single mention on that show?
I think my daughter is a bright and exciting kid, and I have never envisioned or cared for curing her, but if we had not intervened early and intensely we would have found her unable to access activities and enviornments that give her pleasure and have helped her define herself. How could access to services vary so widely from state to state? We are in California and at 3 my daughter got 26 hours a week of(really good)floortime, 2 hours private speech and 1 hour OT from the school district and 20 hours of DTT from Regional Center. It was my understanding that School districts must provide whatever it takes for our kids to “access the curriculum.” And Regional Centers must do whatever it takes to help our kids become integrated into the community. Under what guise are kids being denied services??? That’s a crisis equally profound to diagnosis itself.

— added by judith on Saturday, April 7, 2007 at 11:32 am

oh zuzilicious

oprah
is so liciousy

— added by oprah on Saturday, April 7, 2007 at 8:52 pm

LOL

— added by Susan Senator on Saturday, April 7, 2007 at 8:55 pm

Anonymous (MommaInPhilly) asked “where are all the grown autistic folks?”

Good question to be asking.

They’re out there. They have contacted one of the organizations I work with, the Asperger’s Association of New England, in numbers that each year continue to outpace its predictions and expectations. Their interests and rights are the focus of another organization I work with, the Autism National Committee.

But Autism Speaks doesn’t have any in its governance. Nor does the Autism Society of Canada (See what Michelle Dawson, from the research team of Laurent Mottron PhD at the University of Montreal, says about that.) Nor does the newly founded Interactive Autism Network research-participation organization. (See this article by American Psychological Society president Morton Gernsbacher PhD, regarding participation in research.)

It’s high time that the players in the autism arena with deep pockets and big media presence bring adults on the spectrum into the chunk of the public discourse that they host and propagate.

— added by Phil Schwarz on Sunday, April 8, 2007 at 2:00 am

Hi Susan. I have read your blog for quite a while, but never posted. I too saw the show on Oprah, and I really wish they would have said more about the different therapies. My 3 yr old autie graduated from the 0-3 program where he was getting about 15 hours of therapy a week(yes, not that much) to the school system where he gets a measly 10 hours on a good week, and they don’t offer year around school unless the kid regresses during school breaks! We are now in the process of getting another eval from our new case manager to see if he qualifies for more programs. This is the part that is most frustrating for us. I also wish she had more parents on the show rather than the same ones from the Autism Speaks video. People need to see more of these wonderful kids!

— added by Amy on Sunday, April 8, 2007 at 3:57 am

I watched Oprah with my 9-year old ASD son too. He dashed off during the commercials but came back to sit with me and watch the program when it came back on.

At the end of the show I asked my son if he had any questions about what he saw. With his back to me as he dashed off again he said, “I don’t have autism.”

— added by Anonymous on Sunday, April 8, 2007 at 9:47 am

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