Here is my current autism video queue. This queue should be your queue, too.
The IACC [InterAgency Autism Coordinating Committee] Full Committee Meeting April 11, 2011. This is a long, long video -- but it's broken up into easily-accessed sections if you view the video through the site. My favorite part so far is Lindsey Nebeker's public comments on safety and the need for support for people with autism like her, but especially for people like her younger brother James, who also has autism but whose needs are more "severe," who lives in a group home, and who will become her legal responsibility when her parents pass away.
The MacNeil AutismNow series is this week's most prominent must-see. Though the madness of spring break means I have yet to see them, their viewing is next on my list (after sleeping, helping Leo sleep too, and wishing fervently for our cheerful but unsettled-stomach son to go 24 hours without projectile vomiting).
Distressingly, feedback from trusted sources is not great. Seth Mnookin called the series "An embarrassing, reckless, and irresponsible coda to Robert MacNeil’s career," as MacNeil let his daughter Alison state, on camera, that "Paul Offit and former CDC director Julie Gerberding 'have lost touch with their humanity. ...I don’t know how either of them manage their guilt and complicity in hurting so many babies.'"ASAN, the Autistic Self-Advocacy Network, is concerned that MacNeil "Leaves Out Key Stakeholders, Relies on Old Stereotypes." Dr. Vincent Iannelli at About.Com Pediatrics worries that "we don't need another show to falsely increase fears of vaccination."
I suspect that the series is made from the perspective of a worried grandfather with a less-than-deep understanding of and experience with autism, whose emotional investment knocked his reporting gears out of balance. If my parents had made a documentary about autism when Leo was little, it would have had a similar tone -- especially if they had filtered it through my then-beliefs about vaccine causation.
Since the series is in the bag, I hope that MacNeil does a follow up in a year or two, after he's talked with adults with autism and -- well -- families like ours, who put respect and love for our kids before their labels and challenges. No one can deny our kids need support, but, as Rivka Iacullo said in today's Thinking Person's Guide to Autism essay, Randomness, "[My child] doesn’t need to be fixed; he needs help in ways I didn’t anticipate."
Here is Robert MacNeil himself, talking with Hari Sreenivasen about the genesis of the series. I think it is important to hear Mr. MacNeil talk about coming at the series as a reporter yet crossing the line into personal territory.
The entire six-part series plus additional interviews and study materials can be found at www.pbs.org/newshour/news/autism.
I've also been enjoying Holly Robinson Peete's series on The Talk, about Teens With Autism. Holly's approach on these segments is all about love, acceptance, and being proud of folks like Winfred Cooper and Carly Fleischmann for their successes.
Have I missed any other recent autism video must-sees?
I am so impressed by Holy Robinson Peete.ReplyDelete
But, I don't undertand how Carly Fleischman is communicating. She's not in the video, is she? or is she typing?
I agree with Carly that "being a girl who types instead of talks" is perfectly OK. (I sometimes think I'm a girl who types instead of talks, though, of course, I'm not autistic, so it's not the same thing).
But, after the facilitated communication fiasco, I'm always worried about these reports and have difficulty getting excited unless I have good evidence that the child is actually doing the communicating.
(Note that I feel the same way about child prodigy output -- when children write books, for example, or paint, or produce other output that we can't see them producing).
I understand your skepticism, but I think Carly's case is different than FC - my impression was that her typing speed is more leisurely than impatient broadcast TV can accommodate, so she wrote her statements ahead of time and cued them up (herself) as needed.
Watching Carly access her statements via iPad reminded me of watching Radiolab's Jad Abumrad access pre-recorded sound bites and effects through his AAC-device-looking touch-based soundboard during the recent SF live show.
Thanks for posting the video with Carly! I was not aware that she had been on that show. I agree with you that those were surely pre-typed answers to previously provided questions. I wish, though, that they had said so (maybe they did in the actual show?), and included even one question in which she (slowly) typed the answer herself, since the way it was presented, it seemed odd and questionable. I have followed Carly for some time, and I think contact with media should be designed to show that this is NOT facilitated communication. (Also, I am curious as to who the young man was at the end of the sofa?)ReplyDelete
The uploader has not made this video available to your countryReplyDelete
I wonder why not
P.S. To answer my own question (above), from looking at older videos about Carly, I believe that the young man at the end of the sofa in the clip you featured is one of her home aides/teachers.ReplyDelete
@newnoz, sincere apologies.ReplyDelete
@anon anon, I think you're right. I did post a query on Twitter, haven't heard back.
I saw from google searching that I'm not the only one who worries about this particular line of thought.ReplyDelete
I do agree that the bottom line is that Carly does not have any obligation to be a subject in a study, and that some of us won't be convinced unless she actually is (i.e. produce output by herself in a room where others behavior is monitored, or she is by her self). And she has no obligation to us (the general public) to provide such evidence.
I saw that she uses "WordQ" to type, and the program looks interesting. A trial version is available for download (with text->voice for PC, and just word completion for the mac). The software seems promising.
Oh, and what I love about Peete, and people like her is how well she maintains a communication mindset with Carly, even when Carly doesn't respond typically. It is a real talent, and one that I've seen in psychologists and others with high level skills in interacting with other people.ReplyDelete
Watching people like her can help us all learn to respond to people we're communicating with (both typical and atypical) better.
I saw the show with Peete, and it did not match the youtube video, it was re-cut to appear smoother wrt transitions. I saw Peete mention on the live show that the questions were pre-recorded and would not be able to be answered in the alloted time. I may not be paraphrasing that correctly but that is what I recall to the best of my recollection.ReplyDelete
what I found disturbing about the McNeil piece is the comments on the PBS website from parents of autistics that sung the praises for the affirmation of views about the autism-vaccine connection and the death of their hoped-for child. And the absence of any autistic able to answer any of McNeil's or their questions about the nature of the autistic experience like the nature of empathy or eye contact.ReplyDelete