Post in anticipation of tonight’s potential deluge.

Standard

A lot of this is borrowed from a comment I made earlier, but I wanted to have a post up today in case people found my blog later on.

I don’t know everything that is going to be on the TV show tonight. I do know that some of it is going to be replayed from last February’s broadcast. After that broadcast, they’d asked if they could do an hour-long special on my life. I said, especially because of the problem of people taking one person as representing a wide range of people, I would rather be one among many people interviewed if I were going to take part in something like that at all. This fall, a number of people were interviewed and filmed at a conference (a conference that had both good and bad points in itself). They planned to broadcast the special next spring.

Then they had a deadline at the news station. They had not had time to sift through all the footage of the conference. They would have to repeat a lot of stuff from February. They said they wanted me to chat online with someone and have someone filming my end of the chat, so they would have more material, and more material that was not just me at that. I could not handle an extra person in the house that day, because I had previously that week been barely able to communicate with support staff, let alone new people, because of a pain crisis. They let me record myself and send them the video file. I did that. They wanted another day of that, but the entire day that would have happened I was in too much pain to talk to anyone most of the day. I don’t know whether what they did get will be used or not. But last I heard the end result was still going to include a lot more focus on me than I’d wanted or agreed to, because they just couldn’t find enough other material fast enough.

As I posted in a comment earlier, my worry is that a lot of people are going to converge on this blog believing either (a) that my life is everything CNN says it is (and only that, or rather and only what they imagine to be part of that), or (b) that I told CNN my life is everything CNN says it is (and only that). Neither of those is the case. There was a lot that happened, and that I told them, that did not make it into the final edits, and the stuff that was left out gave a very different impression than I intended when I talked to them. Sometimes they also said things in the end that I had said the opposite of (for instance I said many times that I am not trapped in my own little world, but the segment started with that). I have no editorial control and I don’t think even the reporter I spoke to has final editorial control.

As such, I’ve prepared a page for this blog called Please don’t take me as typical, to handle all the usual things that happen to me after the media shows me. In the past, the entry Editing covered a lot of what was different between the CNN show and my life. Assorted things I’ve meant to say… covered some other reactions right after the first broadcast. Again and again and again covered the way I responded to one of the questions they asked in email beforehand. And The Awful Prison of Autism dealt with stereotyping in general and sometimes how I felt during the filming in particular.

If anyone gets here through the Channel 4 segment… is a response to a different media portrayal. Let’s play assumption ping-pong is another.

Also note my about page has part of my comment policy on it (and should show yet again that while I get pigeonholed as an ‘autism blogger’ I’m really talking about something broader than that).

A lot of the things I wrote about in why I’m not posting much are still going on, although I’ve got the pain under slightly better control at the moment with assorted combinations of medications. I hope that someone will be around to field questions by pointing people at blog entries the way andreashettle and n. did last time, because I’m rarely up to that kind of thing even when I’m not in this much pain. I’ll understand if nobody can, it’d just be nice. Meanwhile I hope that whatever they do show ends up being a good thing.

Update: because of some part of the news today, it’s going to only be shown part today then part Friday.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

43 responses »

  1. Hey Amanda…I will do my best to pop in and divert the various commenters. I don’t know when the show is set to air, but I’ll try to check in a few times tonight and tomorrow morning to get to the bulk of it. hope you’re feeling better soon.

  2. Pingback: About Not Talking

  3. I realize how difficult it is for you to be in the public eye and know you would not be putting yourself out there if you did not think good would come from it. I noted that CBS is going to be airing a series of programs this week about Adult Autistics and while I hope the portrayal
    is a realistic one…I am looking at it as a positive step. Child Autistics become Adult Autistics and so little attention has been paid to this simple fact…..There are as many stories out there as there are people on the spectrum. Exposing oneself to the media’s cutting room has to be a scary prospect…as is recieving the invariable negative comments that unfortunately come along with this type of exposure. I just want to say in advance to those others too who were interviewed at the conference thanks for putting yourselves out there…I think your willingness to share a segment of your lives is a good thing.

    Remember you have the support of your family and friends….We love you for yourself so how someone portrays you on television or in print isn’t what defines you…

    If I weren’t over 3000 miles away I would be handing you a pillowcase to put over your head so you could peek out to watch tonight’s segment..;)

    For those who don’t know me.. I am Amanda’s mom…

  4. I’ll try to answer some questions on your blog, especially pointing to blog entries of yours. I may not be able to find the stuff or retrieve the knowledge that you blogged about it (I can easily remember ideas, but not as easily what source I got them from) but I’ll try.

  5. Laura Tisoncik, in reply, is sitting across the room from me exclaiming loudly that she’s found me and that she wants a finder’s fee. (I am pretty easy to find, I am the person sitting on her couch with teeth marks in my left arm after finding out they did in fact record the screaming. Although it was not “in anger”. And in response to my general drive for accuracy.)

    She also says they left out the best line, the one Kassi delivered loudly to the camera people when we got to the hotel the first night.

  6. I saw Finding Amanda. I enjoyed it partially because I have been to your place in VT and I was in Edmonton. When I the segment about you in VT, I remembered being there last summer with Joel. When I saw the part of it that was filmed in Edmonton, I cheered when I saw people I recognized. In a way, it is hard for me to objective about a program about someone I know and about a conference I’ve been to. I didn’t attend your session on guardianship, but I don’t remember which session I was at when yours was going on. But I loved what you said and your ideas are great! I hope the world will hear your ideas. I know the stuff ended up on the cutting room floor and I hate it when people say ‘afflicted’ by or with autism and other stuff like that. I am going to see Friday’s section and the portion when it comes out in the Spring.

    I loved the fact, that you were wearing an ANI t-shirt when you were talking to Sanjay Gupta.

    Kathy Grant

  7. ATTENTION ALL PARENTS AND PROFESSIONALS

    If this is your first time visiting ballastexistenz, then chances are you came here because of the CNN special on Amanda Baggs. The last time Amanda was on CNN (back in February), parents and professionals tried to ask Amanda many questions to try to help them understand their children better. I’m guessing you may be looking for the same kind of understanding in helping you raise your own children (or teach your own autistic students, etc.)

    Amanda may or may not be able to answer questions for the next few weeks. But in the mean time, you may be able to find many of the answers you’re looking for in some of the excellent blog posts that Amanda has already written right here at http://ballastexistenz.autistics.org. Do explore her archives. I found it worth reading her entire blog — including all the comments, and including all of Amanda’s links.

    Also, here is a list of blog posts that might be particularly interesting for parents or for professionals:

    First, before you ask too many questions of any autistic adults you meet, you may want to read this post entitled “self-narrating zoo exhibit”: http://www.everything2.com/index.pl?node_id=1404508

    On to the list; these are in no particular order:

    http://ballastexistenz.autistics.org/?p=305
    A list of links to blogs by autistic male writers.

    http://ballastexistenz.autistics.org/?page_id=143
    List of writers who are both autistic and non-verbal (use typing, or facilitated communication, etc etc to communicate instead of speech). Some have their own blog sites.

    http://ballastexistenz.autistics.org/?p=38
    Book reviews for books on autism (or by autistic authors) that Amanda likes

    http://ballastexistenz.autistics.org/?p=54
    Links to other disability-rights web sites, with an emphasis on
    neurodiversity.

    http://ballastexistenz.autistics.org/?p=56
    On melt-downs (overload)

    http://ballastexistenz.autistics.org/?p=63
    With the use of pictures of Zometool structures, explains why some autistic people can seem to regress during adolesence (the right foundation wasn’t there to begin with).

    http://ballastexistenz.autistics.org/?p=124
    More on why some autistics seem to regress in adolesence and how the learning path of autistics isn’t the same as the learning path of non-autistics. Includes the importance of contact with other autistics.

    http://ballastexistenz.autistics.org/?p=19
    IF YOU ARE A PROFESSIONAL, SEE THIS: A long post that discusses “do-gooderism” with many links to further essays and discussion — put aside an hour or two to pursue all the working links (a few are now broken, but most still work). Key for any person considering entering any so-called “helping profession” or who already works in one, whether or not you necessarily work with autistic people.

    http://ballastexistenz.autistics.org/?p=239
    Why autistics may learn communication skills more effectively from other autistics than from non-autistic “experts” in autism.

    http://ballastexistenz.autistics.org/?p=240
    Interview with Laura Tisonick about “recovery” from autism–on why the distinction between “low-functioning” and “high-functioning” autism may not mean as much as some people may think.

    http://ballastexistenz.autistics.org/?p=220
    Video on why “retard” should not be considered an insult — that the real insult behind the label “retard” is not being considered to have a cognitive disability but the assumption that a person with a cognitive disability is necessarily a non-person.

    http://ballastexistenz.autistics.org/?p=223
    “Being an Unperson” videotape. On what it’s like to have others
    dehumanize you, perceive you as an “unperson” etc. Amanda’s “In My Language” video is far more famous, but I think this one is at least as good and at least as important to watch for EVERYONE who has contact with ANYONE who has ever been labeled “autistic” or “retarded” or “low functioning” (accurately or not).

    (NOT on this blog, though I learned about it here:)
    http://home.att.net/~ascaris1/
    A list of links useful for anyone who seriously wants to be ally of the autistic community.

    http://ballastexistenz.autistics.org/?p=265
    The difference between real allies and do gooders.

    http://ballastexistenz.autistics.org/?p=85
    Amanda talks here about her ability to type with one finger without needing to look at the keyboard.

    http://ballastexistenz.autistics.org/?p=315
    How to recognize overload. (Be sure to read all the comments added to this blog post. Some other autistic adults and parents share their own tips on recognizing overload.)

    http://ballastexistenz.autistics.org/?p=311
    (On overload)

    FOR ALL PROFESSIONALS READING THIS BLOG, including SOCIAL WORKERS, and MENTAL HEALTH PROFESSIONALS and other people who might work with autistic people in institutions or ANY OTHER SETTING, I especially recommend that you read these three blog posts to understand how power imbalances can hurt the people you work with EVEN IF YOU ARE VERY WELL INTENTIONED and even if you never, ever intend to cause harm:

    http://ballastexistenz.autistics.org/?cat=90
    http://ballastexistenz.autistics.org/?cat=67
    http://ballastexistenz.autistics.org/?cat=47
    The posts listed in these three categories can help you understand what power relationships look like from the side of the person being “helped.”

    People coming here from CNN may also want to see what I think is one of Amanda’s best works:

    http://www.gettingthetruthout.org
    Put aside a good 30 to 60 minutes to read the whole thing straight through, from start to end, without interruptions. DON’T start unless you intend to finish. Otherwise, you’ll miss the actual intended message.

    Also generally helpful is her post on “assumption ping pong”:
    http://ballastexistenz.autistics.org/?p=293 … it’s about Amanda herself, but it’s also a good thing to read for anyone who is prone to making mistaken assumptions about others — and that means all of us.

    Also, at the end of last year, Amanda made a list of all of her own favorite blog posts: http://ballastexistenz.autistics.org/?p=279

    And there’s also her original “In my Language” video at http://ballastexistenz.autistics.org/?p=287. The CNN web site seems to show a truncated version of it (unless I was looking in the wrong place), so this is where you go to see the full 8 and a half minutes of it.

    And I copy/pasted the rest from somewhere on this blog, though I don’t remember where now:

    http://health.groups.yahoo.com/group/connecting2worlds/
    Yahoo mailing list/discussion group where autistic adults and
    professionals who work with autistic people can exchange views and better understand each other.

    Other lists on autism, for parents (following text is by Amanda Baggs, copy/pasted from this blog):

    ANI-L has a Parents’ Auxiliary, but parents there have to be able to avoid being pesky with questions and stuff because autistics there don’t necessarily want to be put on display, so there’s all kinds of rules about how and where to ask questions.

    I guess one of the reasons I don’t know a specific place, is that most lists that include both parents and autistic people have parents asking the autistic people questions, it’s rarer to find a place where autistic people are not expected to answer.

    Although there’s of course a tone to the lists.

    The autism list that used to be at St. John’s has mainly some of the thicker-skinned autistics on it, and is mostly parents and professionals, and the cure viewpoint tends to be more valued there (although it’s currently run by an autistic person and supposed to involve people from all three groups in the list management).

    AutAdvo is largely autistic people and has a much more anti-cure stance, and there’s a fair amount of people there who are happy to give parents plenty of (often conflicting ;-)) information.

    ANI-L is also anti-cure in stance but has some restrictions on what parts of the list parents can post questions to, so that autistic people who do not want to read those things do not have to.

    There’s a lot of lists, and many of them I don’t read or post to often. (I am not on ANI-L at all at the moment, but I used to be, and I left a lot of the lists I’m on during a move when I was too stressed to deal with it.) You’ll note a tone varying from list to list.

    My current favorite is AutAdvo, but it doesn’t serve the needs or desires of all parents. (Cure-oriented parents are not likely to be happy there, although it doesn’t stop some from coming and trying to persuade us with the same arguments we’ve heard forever.)

  8. It sounds like they are having more on Friday…
    Maybe we will get to hear Kassi’s remark then…
    Tell Larua we are glad you have been “found”…;)

  9. Hello! I am watching the show on tv right now- I recognized your speech device. I cannot wait to see the whole show later on you tube, as I missed part of the beginning.

    Get better- pain is no fun. DId you see the new article today on google health about the difference in the brains of those with migraines?

  10. Dear Amanda,
    Thank you for putting yourself out there so that people like me could better understand and appreciate your 1st language and your ability to communicate, albeit differently than me.
    This just seemed to be the perfect time of year to say THANK YOU for being you! You are AMAZING and I bet many other people dealing with Autism Spectrum Disorder are grateful for you speaking out, so that they, too, may be understood.
    I teach students to work with people that have disabilities of every kind. You and your blog will certainly become a part of what I share with my students. THANK YOU :)
    With great admiration…
    Dr. Terri Reese
    Thomas University

  11. Dear Amanda,

    I just finished watching your show and you are quite a remarkable woman. I had not heard about your video but have watched it several times and am astounded at your verbal and non verbal skills. You are able to communicate at a level that is far superior to most speaking people and I would like to exchange thoughts with you. If you so feel inclined, please write. Thank you for sharing some insight with all of us and for giving us the chance at a glimpse inside of you and your fascinating brain. All the best… Phyllis

  12. I dont have Autism, but I was diagnosed with Aspergers 10 years ago. I am an adult with Aspergers. I just finished watching “Finding Amanda” on Anderson Coopers 360 show.

    I find it difficult to hold a job for any length of time. My resume is filled with job hopping. I hate having to be social all the time. I just want to just read or type.

    I too love being online, and have more friends online than I do IRL (in real life). But I do not use any messenger (MSN, ICQ) system. That’s too overwhelming and I find it an invasion of my privacy, so I simply do not open it up.

    No question, I just wanted to say hi, and say thank you for all that you are doing. I also do have a blog as well. I blog about books, about what I like reading, but I am choosing to not link to it because that is my choice.

  13. I hope I can see it on YouTube or something eventually. I don’t have cable tv.

    Hi, Amanda’s mom! :-) I want to know what Kassiane said in front of the cameramen.

  14. Somehow I doubt they’ll put what I said on…I’m not their target segment of autistic (AKA I talk most of the time, and that isnt what theyre going for) and I think the one guy felt a bit of an idiot.

    When I saw they had videoed the screaming, I was just going, “oh HELL no!” It was good that they showed a lot of autistic people though, that was a pleasant surprise.

  15. Yeah both my parents apparently started crying when they heard the screaming. But I suppose it’s dramatic or something. (It wasn’t just anger either, I was ticked off but I was also way overloaded and that one little thing had pushed me into a meltdown. I thought I did a great job of getting out of there calmly in time and going somewhere else to scream (something I’m not always capable of), but… yeah.)

    As far as not being their target… I remember asking them specifically about autistic people who spoke, reminding them I was once an autistic person who spoke, that mostly-speaking auties are just as autistic as mostly-non-speaking auties, etc. They said they’d just naturally gravitated towards people who turned out not to speak or something. (And I think somewhere in the narration they described me as having been non-speaking at a point in my life when I was sometimes-speaking, but I didn’t fully catch who they were referring to in that sentence.)

    My nerves are still too much on edge to go to bed.

  16. Pingback: Being an Unperson « Questioning Transphobia

  17. Although the screaming may have made you uncomfortable, in a way it was good, because it showed your true reaction. You know it is a part of you, and thus although atypical, not in itself bad. Maybe parents of younger autistic children will make the connection that “there is something going on in my child’s mind”, instead of it being a “willful” behavior, and something to be ignored. Also, Autistics who see it will realize they are not alone in their inability to control their frustration/overload.

    Having been a student of yours, I thought it was perfect. Good will come of it, and that’s the bottom line.

    Thanks so much. I plan on using it, if I can to open the minds of the workers in the “institution” I work at.

  18. Hello back Ms. Clark…;)

    Amanda,

    When I watched the segment on CNN last night I truly enjoyed seeing glimpses of your friends at the conference. I saw Kassie (in the hat) and I think I may have seen Joel (tall in a dark green sweater?) Somehow watching everyone communicating so spontaneously..a memory surfaced from before you were born. I once took care of a six month old baby three mornings a week for an airline stewerdess who was a first time mother..A six month old baby is not talking of course but they are communicating in so many other ways. I carried the baby around on my hip a lot carrying on long conversations with him and pointing out things in his environment…I could tell from his responses he understood a great deal…Since this was how I talked to your brothers when they were babies I did not think a thing about it…until one day when the mother came to pick up her baby and I needed to turn on a light and I mentioned to the baby that I was going to turn on the chandalier. The baby turned his head expectently to the light and he smiled when it came on and pointed…We were communicating and when the mother saw this she was totally astounded..She could not stop talking about his response and kept asking how he learned that…At first I was puzzled by her response and then I was astounded and dismayed to realize that she assumed because her son did not yet have speech that he could not communicate…
    Last night I was thinking that DJ’s parents have not demanded he have speech first for them to communicate with him…They have found wonderful ways to communicate with him without speech and now he is using facillitated communication too..
    I also thought how many times people mistakenly
    look at people without speech or reliable speech
    and either demand speech as the only way to communicate or dismiss them as not having anything to say. I think you have a a t-shirt that summarizes that kind of thing…

  19. Hi Amanda: I just read the transcript of the TV show (I don’t process very well by watching TV) and thought you were great. And I particularly liked DJ’s comment that autism should be treated with respect, too. Nice. (I’ve got his dad’s book but I haven’t finished it yet.)

    Take care. Hope you feel better soon.

  20. I wasn’t able to watch the segment last night; hopefully it will be rebroadcast and I’ll be able to tape it then. (Things at the house are insane at the moment.) I’ll probably post again when I’ve seen it.

  21. I cant find the transcript and seem to have missed parts (blasted processing problems). I saw Janna’s back, too. And the person I was watching with rewound on the DVR, convinced I was onscreen (yep) but I didnt recognize me. Ha. I also saw Joel I think, Sharisa, POSSIBLY Kathy, Jordan….LOTS of people who’s movement patterns I recognized.

    The bathroom story was kind of funny. I giggled about that when I got home to our local autism group, and they all looked at me like I’d grown a 2nd head.

  22. I was wondering if someone could link to either a transcript or a video clip of this special. . . I’d like to see if or how they misrepresent you.

    Also, I was just wondering, Amanda: While you post in the AFF forums, you don’t seem to spend any time in the AFF chat room. Why?
    I only care since, well, I find chat rooms easier to keep up with than forums. Go figure.

  23. Um, I didn’t see the program on CNN, nor am I likely to since I don’t own a TV (a choice or rather, too much choice); but wanted to come by and give a kudo’s and thank you for the work you do in making the youtube video’s, the posts and in doing these interviews. I was directed to your video on being an unperson after writing about my experience being in a respite home – and recognized you as “Is she the one who did the video on boiling an egg?” – I have read your blog and found much of it interesting and even more personally applicable, as in having similar experiences from seeing them through the filter of different lives; which I appreciated. So I wanted to tell you. Thank you.

  24. Kassiane:

    I was on CNN for about 30 seconds. I recognized the Chicago Bulls jacket I was wearing. I recognized lots of people and was shouting their names and clapping and making lots of noise as I was watching that show.

    Kathy Grant

  25. Hey–is this going to be on YouTube or something of that sort? I don’t have a TV, and I’m pretty sure there are others like me who’d like to see it.

    Hang in there, Amanda; hope that stress level goes down. If I were you I’d still be too freaked to talk (which for me is pretty darn overloaded, seeing as I’m an Aspie!… but then, they probably don’t want people who are “just” Aspies on their show. Meh…)

    Anyway. Congrats on surviving, and here’s hoping they didn’t edit away too much of the message.

  26. I find chat rooms overloading – I just can’t type fast enough. If there’s only a few people it’s OK, but otherwise my response comes half a page down from the question.

    In Runescape, which I like to play, I largely ignore the chat part and only rarely comment on something.
    Bulletin boards are slower, you post something and wait awhile (varies by board, generally a day or so) and then check back.

  27. Hey, pretty cool! It’s kind of annoying to read transcripts, though; most people don’t talk the same way they write. It’s confusing. At least the autistic people on the show are talking properly! I’d have liked a lot more information–just raw data about you and your life, about the others and their lives; about what’s alike and what’s different between them and between them and NTs; about your opinions… But then, I suppose the show was NT-targeted, and they wanted feelings and implications. Just because 1 in 150 wants data doesn’t mean the other 149 people want it, too. Unfortunately!

  28. The transcript claims that Amanda spoke through a “translator” rather than the speech synthesizer thingy … but then again they warn at the top that it’s a draft transcript, so maybe they’ll fix it later?

  29. Amanda:

    Yeah, I’ll say you did a great job getting yourself out of there and screaming elsewhere. It was important for that part to be seen……so that hopefully people get the message of autistic frustration over the fact that society still believes we can’t live without assistance….ever……

    Hi Amanda’s Mom.

    I/we’re at home now….reading this right before bed……….

    have to wake up and talk/think about colleges tomorrow…….transferring next fall.

    finish AA in December………w00t, 2 days after 24th birthday.

    TI

  30. Amanda:

    Getting your messages across to society is like chiseling a tunnel through solid rock…..to get out of prison (the “box” that society puts you in. You are put in many boxes……one inside another……) you’ve made measurable headway, because people are listening to and responding to your videos…..this blog…….etcetera…….and you’ve made the hole wider so that more of us can help hammer through all the boxes and stereotypes and stuff…….

    Athena came up with that analogy……I think it makes some sense…….

    The assertion that autistics are in their own worlds……is just so that society can justify not trying to learn more about us……how to help us become productive in whatever we want……

    hope you had a good Thanksgiving. same to all reading this blog.

    TI

  31. It looked like Friday’s Anderson Cooper was pre-empted by a Larry King special…I am going to watch Monday as it seems logical it may be shown then.

  32. Hi Amanda –
    We actually met @ MIT, we were both waiting for Hockenberry and I was ultra terrified about bugging you, but you were super cool, and amazing and everything (I could have easily understood you being overwhelmed, I *was* overwhelmed). Are you still working with MIT? I’m applying to the Media Lab for grad school, and was wondering what you were doing there. Where was the final part of the cnn show – it wasnt on last night. it was also cool to see folks i know/knew of at autcom (I worked at maine’s University Affiliated Program during college and did a bunch of research/conferences on autism and FC). Would like to se the final part of the CNN thing, because it was interesting, but i find their omissions (the fact you work with MIT, etc…) VERY disappointing.

    someplace on the neurodiverse spectrum (cp, anxiety issues, etc)

    Mike R. (the guy who bugs hockenberry too much)

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