November 20, 2007 by Kristina Chew, PhD
Filed under Health
DJ Savarese appeared on Anderson Cooper 360 on CNN’s autism special Monday night. When CNN’s Dr. Sanjay Gupta about DJ about whether he felt that autism should be treated, DJ responded:
”Yes, treated with respect!”
What if R-E-S-P-E-C-T — not this or this — was the way to spell “autism treatment”?
[...] mom and dad made a point of telling me how much they liked the CNN special on autism, Finding Amanda that aired last Monday (and was supposed to be re-aired Friday night, but got pre-empted by live [...]
[...] answer to my last question, I hope with respect and as the real human being that Charlie, alert to others, and no curious boy in a fairy [...]
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Screw respect. If someone “respected” me, I still wouldn’t understand the mechanics of small talk. I want education and training. I want to improve so that I can more effectively disrespect people who say maudlin, annoying BS like this. Ahem. Anyway.
I just finished watching this show and that quote by DJ Saverese is *exactly* what I just posted on my blog as well. It brought tears to my eyes.
Wow. All that money spent trying to help those autistic children and adults with serious intellectual, communication and behavior deficits, including dangerous self injurious behavior, and all that was needed was a few soothing words from DJ Savarese.
Do you have a video of Saverese’s comments so I can play those words for my autistic son and help him overcome his serious autism deficits?
Harold, maybe you should play that video for your son. It’s good for autistic people to see other autistic people, after all — particularly ones who know that they deserve respect (as your son, and all other autistic people do).
I probably shouldn’t knock respect. I loathe it, but…if I’m going to tout it’s flaws…I should offer something constructive in it’s place. My gameplan is to replace respect for atypicals with a mode of living called “post-normalist formalism”.
It advocates (for the neurologically otherwise) a complex system of gestures that conveys patient non-condescension towards The Rest of Them. They (The Rest of Them) will then never suspect our inner-disdain for their Ways and Habits (because We, secretly, hate them).
Of course, this doesn’t address the day-to-day difficulties associated with the Issues thematically highlighted by Autism Vox. Post-normalist formalism is really more of a psycho-palliative than anything else, but still…sometimes that’s okay. Maybe. (It’s either better than respect…or I have control issues. I can’t tell which.)
I thought it was a well done piece. Most autism pieces in the media just focus on biomedical treatments and the vaccine debate. There really aren’t any pieces out there which talk about how to help someone live with autism. You really have to ask someone with autism how they feel to get that answer and I thought Dr. Gupta showed a lot of respect for his interviewees.
Nicely done
Assistance can be executed with RESPECT. Mr. Doherty believes they are mutually exclusive of one another.
I think that the show gave us a perspective that many “neurotypicals” don’t want to hear. That people with autism do have minds of their own. Of course, therapy is important to be able to function in a world that will not change for you, but I think us as parents want to “fix” our children. I think that this arguement is something that has been around in a variety of “disablity” settings. In the deaf community there is a lot of debate about ocular implants. This whole issue is so complex.
I agree with Estee and Tracey. I have respect for my son with Asperger’s (as well as my two NT kids) and I love him as is. I don’t want to “fix” (substitute cure, recover or any of the other words we hear in this context) him. What I want is to identify challenges that his AS presents for him (and there are plenty) and give him the tools he needs to try to handle those challenges. I want to help him overcome the obstacles so that he can achieve his potential. But I also want him to know what a great kid he is and that having AS doesn’t make him any less great. It is very complicated.
M, I’d be glad to know about “post-normalist formalism”—-there’s a very nice oxymoron in there!
Someone very close to me has a physical disability that can evoke attention that can be discomforting. Seeing these reactions among others makes it clear, real respect is not so easy to have—and is priceless.
It\’s so odd that chelation and hbot in your mind are \”evil\” treatments, and zoloft combined with risperdal is not.
There are certain words that just send some autism “advocates?” into orbit; respect and acceptance being the first two that come to mind. They immediately alter the statements of others by adding “all” to the commentary, then make statements such as “all that was needed” and wish to start some silly debate.
The statements regarding respect and acceptance are starting points, they are the building blocks for improvement strategies. Parents who scoff at these terms display their own inadequacies and sacrifice their own self esteem. People know when they are being de-valued, and it hurts. Please never confuse lack of expression with a lack of having feelings.
Beth…you said it…this is all very complicated.
Kristina…that’s is one of my many worries. Respect in priceless, but so deserved.
Another Voice…thank you…said perfectly.
Respect … value … these should be first and foremost on the autism treatment list.
Ironically, if DJ’s autism had gone “untreated” by his devoted parents, he would possibly not be able to communicate his desire for respect…
Once again, it’s not an either/or situation…
Let me offer some context for my son’s remark–I don’t want to demean you, Mr. Doherty, but I do want to take you to task for your tone. This was a boy who was abandoned, beaten horrifically, and sexually abused (tortured really). He worked like crazy to trust the world again, to allow us to help him learn how to read, and then to point, and then to type. He’s overcome his profound mental retardation label; he’s starting to feel ok about himself. When he was raped, his attacker told him over and over again during the act, “You’re fucking freaky.” I remember the time he told me on father’s day, “Dad, thanks for not thinking I’m freaky.” This is what DJ means when he says, “Treated with respect.” But as another commentator noted, it’s not simply about respect (though that’s a perfect starting point); it’s about, at least for some kids, medicine; OT, sensory integration, literacy training. You name it. –Ralph Savarese
Alex really enjoyed watching DJ (he has seen the first CNN show on Amanda more than once). I had been talking to him about FC lately since Jonathon wrote this FC post. His only comment to me though was “Wow! Indoor trampoline!” — I think he’d like to go & visit you guys Ralph….
At one point, DJ had an expression on his face, a sort of half smile, that reminded me more of Alex than any facial expression I’ve ever seen on anyone. I look forward to watching it again as well as Friday’s followup.
I missed the show; does anyone know if the story from yesterday evening will be repeated (or made available on YouTube), and/or what Friday’s follow-up is meant to be?
Thanks to Amanda, DJ, and all the other brave folks involved with this story.
I understand that Friday will be a repeat, but more complete—with more footage (it’s twice as long, from 10pm – 12midnight).
Thanks, Kristina – I’ll set my VCR!
My mom and dad really liked it—-they liked that it was about “what it’s like to be autistic”; about every day things.