Speaking about Autism on Revolution Health: Bloggers & Doctors
I was in more than the usual rush to get home last night because I was to participate in a conference call interview with Dr. Michael Weiss, a developmental psychologist in Connecticut; Dr. Robin Chernoff, a pediatric developmental specialist in Maryland; blogger Autism Diva; Kathleen Seidel of Neurodiversity; and Jan B of Just a Mom, That’s More Than Enough. Estée Klar-Wolfond of Joy of Autism and The Autism Acceptance Project and Madeline McEwen-Asker of Whitterer on Autism sent in questions as they were unable to attend.
Early in the conversation, Dr. Weiss noted that, from reading our blogs (and I note we were all mothers) that—rather than him being the “expert” we were to post questions to, he thought it was the other way around. It was a pleasure and a privilege to speak to him and Dr. Chernoff and, most of all, it was very good to hear the voices of those whose words I have been reading for some time now (Charlie sang his way into the conversation a few times, too).
Thank you to Cynthia Samuels for making this conversation possible.
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POSTED IN: Adulthood, Education, Family, History, Living Arrangements, Media, Parenting
13 opinions for Speaking about Autism on Revolution Health: Bloggers & Doctors
Ms. Clark
Apr 26, 2007 at 5:00 pm
Did Mcewen’s question get asked? If it did I missed it.
The experience was interesting, and I’m so happy it all ended on a positive note.
One point I wanted to make about the “intensive intervention” or “verbal behavior” intervention for older autistic kids, is that I don’t think there’s *any evidence* for what most older autistic kids need (lets say that we are talking about the two Charlies. yours and Jan’s) but it seems to me that while you can’t ask a 2 year old what he needs in the way of education, you might be able to get some good infromation from a 10 year old as to what he or she wants/needs, and then if that doesn’t work, consult with autistics of similar abilities/disabilities who are 20 or 30 to see if they can direct you to what might be most helpful.
Larry Bissonette might be able to give some insight, but there have to be dozens of people like him who were mistaken for being profoundly retarded, whatever… Even people who ARE “proufoundly retarded” might be able to tell you something about what helped them, if not in writing. Tito M. might have some answers. I’m really afraid that only “famous” autistics will be asked though, there are so many more who aren’t “famous”.
I’m afraid that anyone selling “verbal behavior” or any other program will jump in there and say, “Oh, yes, our program is the best. Train the whole world in our technique and use it blah blah blah and the older kids will benefit, blah blah blah….” That’s exactly what people do when they have a “package” that they want to sell, and few people demand any real science or statistics to prove what it does and few people think of what harm might be done to autistics with such a program and no one asks the autistics if it “helps” or if they enjoy it, or hate it, or if it damages true communication which I suspect “verbal behavior” does.
Kristina Chew, PhD
Apr 26, 2007 at 5:21 pm
We did “verbal behavior” with Charlie on and on for a few years—-I liked the emphasis on helping him speak and communicate that are part of some of the programs. I did not like the behaviorist we then had (he had been hired by the school district in St. Louis county, as we were in Missouri then)—he informed us that he considered our in-home program a “benign dictatorship.” Verbal behavior proved less effective for Charlie in particular as he got older. One of his former school districts in NJ has, like a number of other school districts, implemented verbal behavior into its autism curriculum and I share your reservations, Ms. Clark—it does feel like a “package.” Charlie’s education has only been as good as it has been individualized to him.
In regard to speaking to autistic adults about their jobs, one person came to mind last night as we were talking. He is a caddy —Jim used to caddy with him—-and that’s the kind of job I can see Charlie in. Something outside with physical effort woven in—but I’ll have to see what Charlie thinks first.
Justthisguy
Apr 26, 2007 at 9:12 pm
Caddying is how my Dad learned to play golf while making some very necessary money for himself and family back in the Depression,as well as learning how to get along with wealthy folks, which helped him in business. Unfortunately, around here at least, playing golf properly (that is, on foot) is actively discouraged in favor of making everybody ride in the carts.
I live in Southern Florida, in a county with over a gross of golf courses and only one shootin’ range.
Yeah, I’m still peeved about the events at VPI, where no one was allowed the wherewithal to defend himself effectively
JanB
Apr 26, 2007 at 9:44 pm
I thought it was fun too. At the end I was making Charlie a snack of mandarin oranges and trying to get him to settle down. It was neat hearing everyone’s voices and associating those with the words that I have been reading for ages on the blogs.
I felt honored to be in such cool company!
Leila
Apr 26, 2007 at 11:10 pm
JanB, I enjoyed hearing your voices too! They totally fit the bloggers personality. The discussion was very interesting, and I hope you reunite soon to continue the conversation.
Leila
Apr 26, 2007 at 11:15 pm
I meant “bloggers’ personalities”. I also enjoyed the bit about hyperlexia, because my son has it too.
Laura Cottington
Apr 26, 2007 at 11:32 pm
That was such a blessing to hear you all bring your words to life. Fun!!! Great job!!!
Zaecus
Apr 27, 2007 at 3:48 am
Heh, both professionals seemed to lock up at first in response to Estee’s question about when we’re actually going to start teaching to autistic intelligence.
I think that’s the key, particularly in light of Dr. Weiss’ earlier statements about the legislation being ill-advised because it spoke of ‘autism’ instead of being more flexible about the various causes and how, as these causes are identified, the legislation will no longer apply as smoothly.
We have a diverse group of people who have very similar ways of processing information of all kinds, and I realize that the established way of thinking sees deviation as something wrong, undesirable, problematical, or otherwise less than preferable, but I’ve started trying to look to the similarities of all of us, all of us humans regardless of whatever smaller group we identify, or are identified, with.
The focus on causes, with a clearly identifiable focus on eliminating those causes, seems to primarily concentrate on differences.
When people focus on differences, we wind up with a lot of things that end in -ism, but when we focus on similarities, we start to wind up with more community.
Apologies if that’s somewhat confused or incomplete. While I was glad to hear all of the voices, I actually had trouble with it since I don’t have have mental images for any of you except your written words.
It sounded like the conversation as a whole was a positive one and a good example of the kinds of conversations that really do need to be happening on the subject.
PS: Since I was a verbal hyperlexic (to wield clinical terminology), I honestly believe I could not have gotten I diagnosis before I did, even though my early language (according to descriptions) was most obviously scripted, rote, and/or echolalic.
Zaecus
Apr 27, 2007 at 3:49 am
Eh? I thought there was supposed to be someone representing Autism Speaks in the discussion, or did I miss that one of the doctors is associated with them?
JanB
Apr 27, 2007 at 5:41 am
They gave us all a time to call in and some people were not there or didn’t call within that hour. But as it was, there wasn’t enough time. I think we could have easily spent hours talking. I didn’t have any idea who was going to be there except for Dr. Michael Weiss. Even the other doctor, Robin Chernoff was a surprise.
Imagine my face when I am standing in the garage - barefoot - hiding from my kids and hearing that all these people that I have been reading for ages via their blogs, are on this call with me. I thought, wow. Why’d they pick me? And then I thought Wow! What an opportunity!
Lisa/Jedi
Apr 27, 2007 at 11:38 am
I just got the chance to listen & it was great!! Lots of good points made… I was impressed by the physicians & their attitudes towards autism going into the discussion, & by how well co-ordinated it was, too. (I have an awful time with conference-type calls. I have trouble focusing on what people are saying if I can’t see their faces.) You all were wonderful! I loved hearing your voices very much & putting them together with your written “voices”. I liked the questions asked & the thoughtful responses… my only “eep” moment was at the end, when you were discussing autism & the ability to lie. My son, at age 11, does not have this particular aspect of autism- in other words, yeah, he’s learning to be sneaky (& his psychologist is delighted, let me tell you… I’m not as convinced, of course…). I would hate to have this become yet another marker, like verbal ability or stimming, for what is “really” autistc or not. There is a huge variation among autistic people & my kid, for all his developing ability to lie, is definitely autistic…
Garcia Left
Jun 19, 2007 at 2:18 pm
Steve Case was on CNN this morning…
http://www.youtube.com/watch?v=9erY7sXaRog
Lynda
Nov 27, 2007 at 2:52 pm
I have an emergency situation with my 16yo autistic son who has been severely assaulted (beaten, tazered, etc. after being fully restrained and put in a police car) by a police officer. He was wrongfully accused of a felony. His father and I witnessed the entire thing, so we are certain. We witnessed the assault, too. It’s a nightmare! My son is being held in a detention center — TOTALLY the wrong place for this VERY good child. He is suffering from PTSD as a result of this recent trauma, not to mention all of the pre-existing issues (severe anxiety disorder, etc.) His regular doctor is ill. I MUST find a new psychiatrist or neurologist for him IMMEDIATELY, in the St. Louis, MO or surrounding area. It must be someone specialized, and someone willing to do forensic work as this will involve a criminal trial and later, a civil case (We will sue the police and the city, obviously.)
I’m sorry if this isn’t the best place to post, be we are desperate, as all of you parents with autistic children can imagine. PLEASE send any information, links, etc. that you have. I don’t need parenting advice: Just information, please. THANK YOU!!!!
~Lynda
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