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Autism Vox

Amanda Baggs on CNN tonight

by Kristina Chew, PhD on February 21st, 2007

Dr. Sanjay Gupta, Chief Medical Correspondent for CNN recently met Amanda Baggs who blogs at Ballastexistenz and is an important and powerful voice in the autism world. Writes Dr. Gupta in his Paging Dr. Gupta blog on February 20th:

While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Baggs’s writing on Ballastexistenz and her comments and questioning of my own writing about autism has helped me to try and to think harder. Baggs asks hard questions that call for thoughtful responses, as a recent exchange among her, another autism mother, and myself on Autismland shows. Baggs asked me why I had spelled my son Charlie’s pronunciation of “Mom” as “Mahm”; she wrote:

“I had a lot of articulation problems growing up. I would not have liked it if someone had spelled everything I said phonetically because other people thought it was cute or personal.”

Another comment from Baggs has been making me think very carefully about how I represent Charlie in my writing:

“I do not see you describe other people in your life from as far outside as you describe Charlie.”

Indeed: I have to wonder how I write about, for instance, my husband Jim with whom I talk constantly, with whom I use language constantly, and about Charlie who has minimal speech but certainly a lot to say.

I have read more than a few critiques of Amanda Baggs to the effect of “not all autistics are like her,” just as not all autistics are like Temple Grandin, or Tito Mukohopadhay, or Charlie, or our children with their highly individualized needs. But there is some commonality in the way Baggs describes her interface with the world; she uses words via her blog, and Charlie (so far) uses something else. Baggs asks hard questions of her readers and of the world—-precisely the kind of questions that I think are the most important ones a good teacher can ask.

Amanda Baggs will appear tonight at 10pm EST on Anderson Cooper 360.

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POSTED IN: Disability Rights, Media, Stereotypes

95 opinions for Amanda Baggs on CNN tonight

  • mcewen
    Feb 21, 2007 at 2:08 pm

    Hmm. Those are hard questions, ones that I should examine myself.

    My initial reaction would be that for me at least, it’s because speech is my prime means of communication and like many people I do it without effort. Experiencing first hand the difficulty that my own children have with speech, makes each word more valuable to me.

    I think Amada makes a very valid point about phonetic spelling, one that I am more than guilty of. I think I do it in part because I want to show ‘people’ that whilst the words that they use, and their manner of speech may sound unusual if you’re not used to it, it only disguises their cognitive abilities, sort of ‘don’t judge a book by it’s cover.’

    I’ll stop now, as I know I’m going to get out of my depth.
    Cheers

  • Kev
    Feb 21, 2007 at 2:47 pm

    This is a very brave thing Amanda has done in my opinion. Opening yourself up this way I would imagine can have an effect on one’s ability to deal with things. I hope everyone who is interested *after* the show can respect what I would imagine will be an extreme need to process all this in solitude if necessary.

  • hj
    Feb 21, 2007 at 2:50 pm

    Thanks Kev for your thoughts on this: I second what Kev says.

  • Hilda
    Feb 21, 2007 at 3:33 pm

    I think that whether you spell phonetically can depend on what you are trying to talk about. Both of my sons have disfluencies - when I write down something they say I almost never write it with the disfluencies; the one exception is if I’m writing a note to one of their speech therapists discribing how they are doing, disfluency-wise. I guess I thought that you spelled Charlie’s speech phonetically because it is a blog about how Charlie is doing, and his difficulties with speech are part of that. I love reading your blog about Charlie; it gives me a lot to think about. One thing that I’m having a hard time with is when I have to click right under the words “Charlie’s Blog” - every time, I think: this is NOT Charlie’s blog. Charlie does not have a blog - he may or may not have one in the future. This is a blog about Charlie, which is very different. I wonder sometimes when I see “Charlie’s Blog” whether you are sure that he won’t have a blog of his own someday, and so feel more comfortable using that phrase, thinking he won’t need it, or ever understand that you’ve used it.

  • Kristina Chew, PhD
    Feb 21, 2007 at 4:03 pm

    Hilda, thank you for pointing that out—–I think someone else named it “Charlie’s blog” and I am looking into this.

    I do not wish to start a controversy about the spelling issue, which I think has a lot to do with my own attempts, misguided and not, to present Charlie and his speech as accurately as I might. But words have a way of meaning something different from what one may expect, as McEwen points out. To me, this is why comments on my posts are invaluable—I am here to learn how to do the best job I can in “representing” Charlie and I need help.

    Thanks Kev and hj—-I am very glad that Amanda is getting the media coverage.

  • Ms. Clark
    Feb 21, 2007 at 4:24 pm

    I hope people won’t start interpreting what Amanda Baggs says in the CNN program. They will get it wrong, almost assuredly, and she’ll probably have to expend mountains of energy to straighten it out. I would guess that she might need to stop answering questions for a few weeks to survive the invasion of privacy she has endured. But tha’s just a guess.

    I personally feel uncomfortable with the way your represent Charlie’s speech on your blog, and I feel uncomfortable with all the photographs of him. I can’t imagine that he will like to look at your blog in the future. I think he will feel over-exposed. That’s just my opinion. I realize that you love Charlie, Kristina, I just think the world knows enough about him, way way too much about him.
    I think autistics crave privacy more than NTs and that Charlie doesn’t have enough (though you give him some privacy, I know you do.)

  • Kristina Chew, PhD
    Feb 21, 2007 at 5:02 pm

    Thanks, Ms. Clark. I really, really appreciate knowing this from you and Amanda’s comments really have gotten me thinking. Please keep letting me know what you think!

  • Rochelle
    Feb 21, 2007 at 5:21 pm

    I think that Ms. Clark raises an interesting issue regarding what our children will think about our efforts to help them when they get older. I worried what my son might think of me having him evaluated for autism if he wasn’t. Would he think that I thought he was “damaged” or “retarded”?

    I do think part of Ms. Clark’s criticisms of Kristina (and in turn the many of us who blog about our children and/or autism) stem in part from a belief that we should hide away our children from the world. That we shouldn’t talk about their stories and experiences, that we shouldn’t show their pictures like other proud parents do, and that we should live in fear of what others think about us and our children. And, I disagree with that statement and Ms. Clark’s criticisms.

    I know that this blog was the first blog I came across (although not the last) that seemed honest, personal, and positive. Autism wasn’t the worst thing that ever happened to me or my son. And, that there were people who were just as proud and amazed by their autistic children as I was about mine. Reading similar fears and similar joys reminded me that I wasn’t alone and that it was okay to celebrate the unique individuality of my son. After reading the ASA and CAN websites, it’s enormously powerful to read that autism and neuro-diversity isn’t a catastrophe, isn’t a death sentence, and is something to embrace and celebrate.

    And, while I can’t speak for Charlie, I do hope that in the future, he will realize that his shared experiences and his mother’s positive outlook on his autism gave many other parents permission to celebrate their own children’s diversity. That there is an entire community who values his experiences and his differences.

    Finally, I disagree with the point that autistic people as a whole crave more privacy than NT people as a whole crave more privacy. I think that’s a gross overstatement. Just as there are outgoing and open-book NT people, there are outgoing and open-book autistic people.

    R

  • Jennifer
    Feb 21, 2007 at 8:13 pm

    Regarding the phonetic spelling — I wonder if it might be more useful to use it when you’re pointing out an improvement in pronunciation? For instance, I was telling our speech therapist that E. said “on the bus” as we were walking to the bus yesterday because I wanted to convey that she used a spontaneous three word phrase (yay!!). She really said, “ah da bus!” but since I was concerned with the LENGTH of the utterance, not its pronunciation, I didn’t say it that way. If I were going to point out that she said “ON” clearly, I might say, “E. said ‘ON da bus!”

    That said, the way you describe Charlie’s speech has never made me uncomfortable, because I know you’re just trying to present as realistic as possible a view of your days, including his communication.

    Regarding Charlie’s privacy — I figure…there are many moms who blog about their children, neurotypical and otherwise. When I was blogging regularly, I often spoke of my brother, our problems with his school district, and his girlfriend.

  • Anne
    Feb 21, 2007 at 9:47 pm

    Kristina, I’m really looking forward to seeing Amanda on TV tonight. You’re right, she asks the tough questions, but she does it with kindness. She’s a compassionate person.

    Rochelle, I have the same feelings about privacy as Ms. Clark, and that may be because we both have adult children. I think many adults, autistic or not, would be horribly embarrassed by their parents’ public presentation of the minutiae of their lives. Parents of small children probably don’t think about that, and view these intimate parent sites as just the equivalent of showing photos from our wallets. But I don’t think it is.

    I’m sure Amanda has agonized over how much personal information she should publicly reveal, but she is an adult and can make that decision for herself. I think many autistic adults would like the opportunity to control how much of their personal information gets disclosed, and to whom. I think they should have that right. It has nothing to do with being ashamed of our children; it has to do with respecting them as people who are separate from us.

  • Kristina Chew, PhD
    Feb 21, 2007 at 9:59 pm

    Anne, thanks for your very thoughtful response. I have indeed, in conversation with Jim, agonized over precisely the issues you refer to, including the use of Charlie’s image and the references to various details of our lives and, especially, of his.

    I try always to write honestly, and there is always more said and unsaid than meets the eye.

  • Clay
    Feb 22, 2007 at 12:13 am

    I’m not suppose to be posting yet, as I haven’t actually caught up with this blog. I’m still perusing April 2006.

    But, I have thought about blogging on Edith Rose, and have considered some of the points that both Ms. Clark, Rochelle, and Ann have meade regarding respecting the privacy of Edith’s life.

    That is a point well made. The biggest reason that has stopped me from creating a blog about Edith though, as been out of concern for protection of her against the many, many child molesters that lurk the Internet.

    Edith is very pretty. I know it is evident that I am biased, being her father. However, countless of people, almost everyone who ever sees her comments on.

    In fact, her beauty has been ironically part of our problem from the get go. It seemed to, and still does, get in the way of her autism. There have been numerous times that her odd behavior, and meltdowns have been met with comments that it is somehow our fault as parents, because we don’t discipline her as we should.

    This also got in the way of her diagnosis by the medical professionals in her life. Both neurologists, whom you would have thought, after a series of visits and hearing our concerns, would have suspected autism, but whom instead, either ignored our concerns, or recommended books on raising children.

    I’m not sure how to take Amanda’s distress over the “view from above” aspect of your, Kristina, blog on Charlie, and other parent’s blogs regarding their autistic children.

    It seems to me to be clear that, as parents, we are outsiders to our autistic children’s experiences. Therefore, anything me might say about our child is, of course, coming from the outside. But, not necessaraily from above.

    As long as disclaimers are made that we are merely speculating about what we see, that should suffice.

    Edith is only five. There is no chance right now for me to actually know what she is actually experiencing, feeling etc. I can’t really ask her and expect any sort of answer. Maybe some day I will be able to get to that level of knowlege. Or maybe I never will.

    I would love it if Edith could, as she grows up, learn to type out her thoughts on a keyboard as Amanda does so effectively. But, I don’t know that will be what will occur.

    Right now, Edith doesn’t care about computers. She will play with the keyboard and mouse on my computer but, she is only playing. She seems to be good at creating effects with the mouse, that cause me to have to rescue the computer from crashing!

    I’m glad, Kristine that you tipped me off on this. Otherwise, I wouldn’t have known about tonight’s showing.

    Anyways, thanks to you Kristina, you help me more than you know with both of your blogs, and to Amanda, and Ms Clark, Rochell, and Ann. You all help me to understand autism in the right light.

    BTW, I just saw Amanda on CNN. She was excellent. I’m not entirely sure of the doctor’s understaning regarding all of what she is about though.

    My wife watched the show with me, and I was able to introduce her to Amanda and how people can make erroneous estimates regarding the intelligence and funcioning of autistic people. Not that she has any of those trappings though!

    Amanda remains the most important person involved in the fight for the disability rights of not just autistics, but all disabled people.

    I pray to God that she will always be able to communicate her thoughts to the world.

  • Kristina Chew, PhD
    Feb 22, 2007 at 12:49 am

    Clay, all I can say right now is thank you. The discussion here has been on a mind all day. And please don’t feel that you have to read every single post here before commenting! Your voice and thoughts are always more than welcome.

    Ms Clark has a good post on CNN’s representation of Amanda Baggs.

  • AJ
    Feb 22, 2007 at 12:57 am

    Kristina,

    I often WISH I could spell Eleanor’s “words” as you do Charlie’s….if only because I could communicate to friends and family who don’t see her often to understand the progress she has made. In fact, she had me laughing loudly today when I picked her up from school, and she was scripting from “Little Einsteins”. We were walking to the car, and she said, “Go West, Young Train!” And, as I always do, I repeated what she said (surprisingly able to recognize what she said). She looked at me, expectedly, and said, “ART BY…” and I repeated…and she said (an Ely version of) “JOHN SINGER SARGENT”.

    Huh?!?!?

    I was able to repeat what she said. This was followed by:

    “And MUSIC by…”

    “And music by….”

    “Georges Bizet!”

    Now, I won’t attempt to spell that out phonetically, but I will say that it was very recognizable. We repeated this little verbage on our way home, and “Georges Bizet” was replaced by “Ludwig von Beethoven”, or “Edvard Grieg”, or, finally, her most difficult attempt, “Nikolai Rimsky-Korsakov”. (And the latter being the least recognizable, but Mom recognized the effort made!) She was quite obviously proud of herself, grinning into the rearview mirror of the car.

    Oh, and “John Singer Sargent” was eventually replaced with “Edward Hicks”.

    I don’t have a tape recorder, or even a video recorder. But there are times I wish that I did, so folks could see the effort — the struggle — this little 5-year-old girl puts into communicating. Yes, it’s scripting, but it’s still a lot of work on her part. And the “I did it!” look on her face was worth it all.

    My feeling about Amanda is that she has taken the path that works for HER, and bless her and commend her for it….if what makes her happiest, if what conserves her energy for what she feels works best for her…if what gets her message out to people with autism, then that’s what she needs to continue. I am truly grateful to be able to read what she writes. As for your blog, of which I am a HUGE fan, keep writing as you write. I see so much of Ely in Charlie, and vice-versa. What you write, Kristina, echoes my life. What Amanda writes gives me faith in Ely’s future.

  • Autism Vox » Indirect Discourse: On representing autism
    Feb 22, 2007 at 3:50 am

    […] The students in my Elementary Latin class have not yet started to study indirect discourse (we are just finishing our study of the passive voice of verbs) but I have been thinking of this Latin grammatical construction today as a result of some recent exchanges on Autism Vox and on Autismland regarding my attempts to phonetically convey what Charlie’s speech sounds like (for instance, my writing of him saying “Mahm” instead of “Mom”), and of my representation of Charlie in my online writing in general. Amanda Baggs of Ballastexistenz noted to me that “I had a lot of articulation problems growing up. I would not have liked it if someone had spelled everything I said phonetically because other people thought it was cute or personal.” […]

  • bonni
    Feb 22, 2007 at 10:07 am

    I love getting to know Charlie. I love seeing the things he says and hearing about the things he does. I love his smiling face, too. Since I can’t really see and communicate with Charlie, the only means I have of knowing this extraordinary boy is through his mother’s writings.

  • Rochelle
    Feb 22, 2007 at 11:03 am

    Anne, you make an interesting point that I hadn’t thought about before (regarding the ages of our autistic children). I’m not sure that I completely agree but I think you are making a valid point that deserves consideration.

    I reconcile, personally, that I haven’t posted anything online that I would be ashamed for my son to read in years to come. And, hopefully, everything I have posted will reiterate to him how much I love and respect his individuality. And, I hope that he recognizes that such online communities help me to be a better parent to him. Something I believe he will appreciate.

    Still, you make some valid points that should be considered. We all need to be aware of the purposes of our discourses…

  • Lisa/Jedi
    Feb 22, 2007 at 3:36 pm

    Once again I’m jumping a day late into the discussion, but there’s a lot here to comment on…

    I started blogging after I started reading the blogs of other parents with autistic kids, because I saw many similarities in the journeys I was reading about to our own, but also there weren’t very many blogs by parents of older kids (that I could find at the time). From the beginning I was clear in my own mind that the blog was primarily my own reflections on my family’s life, & so it’s essentially about me, not my kid… I do sometimes describe in detail some things that aren’t pleasant (Brendan’s meltdowns & head-banging, for example) but I do so in order to illuminate not only the journey to understand why he’s doing these things, but our journey to discover ways to help him. I try very hard to be compassionate when I describe any aspect of my kid’s behaviour & I also try to be balanced about my reporting, so that it accurately reflects our life & doesn’t reflect a too-rosy or too-gloomy view. To be honest, I don’t know if my kid would consider my writing an invasion of privacy- but it’s not just his privacy I’d be invading, really, it’s my whole family’s. My husband is fine with what I’ve been writing, & I often do a mental check before posting something, to see if any of my family members would be embarassed by what I’ve said. Again, though, it’s all from my perspective. I’ve decided to weigh-in on the side of sharing & risking, rather than not getting involved at all. The need for positive perspectives on autism is overwhelming, in my opinion, so I’m doing my little bit.

    Privacy-wise, I was very squirrelly at first about posting names & pictures. Then, I inadvertantly “outed” our names when I posted my autism sermon last November, so decided to let it be… I also had only posted pictures of Brendan when he was very small up to that point, but after sending some anonymous photos for Kristina & Jim’s conference last October, I realised how proud I was of my kid & how much I wanted people to see him & the cool things he does, so I’ve been putting more photos in the blog. That’s the key, really… I feel so very proud of my autistic son & want it understood that his differences don’t make him less valuable & don’t make me less likely to want to share what he does with the whole world.

    As to the phonetic spellings… although I respect what Amanda has to say, I don’t find the phonetics personally offensive because to me they represent how Charlie speaks, not a value judgement as to how he speaks. I don’t mind a diversity of speech patterns or pronunciations being represented- a southerner’s drawl is often represented differently in writing, too, without a value judgement being put on it. When Kristina writes “Mahm” I hear it & enjoy knowing how Charlie says it.

  • Kristina Chew, PhD
    Feb 22, 2007 at 3:53 pm

    Thank you to everyone—this is why I have been writing online: I continually learn and try to learn from what everyone writes, both on your own blogs and here. It’s a great thing to be writing and communicating with everyone: Please keep letting me know what you think.

  • Ann
    Feb 23, 2007 at 10:48 pm

    I think the privacy issue among those with autism has more to do with the fact that being “in the system” so MANY people have access to their personal information. So called normal people can control how much information goes to which set of people. I can keep my work life and my family life and my social life somewhat seperate. Someone who has been in the system has staff and doctors and social workers who get replaced on a regular basis. They never know when they meet someone if their reputation has preceded them. There is no control of keeping embarrasing experiences or mistakes private. You may say “well there is HIPPA” and I can say “sure there is show me a staff who has NEVER talked about their clients to their family or discussed them in front of other clients ” One of the advantages of moving to different places is that you have a fresh start. A person with a disability NEVER has a fresh start. There will always be someone to rub in some behaviour or reputation that they are desperately trying to lose. Its like living in a small town where people know your life history and therefore never give you an opportunity to change.think of it this way -would you want everyone in at your work place to know the details of when you hit puberty ? to know every last detail of your teenage battles with your parents ? to ALWAYS remind you of the last traffice ticket you got and use that against you every time you wanted to do something ? People with autism need respect and part of that is the opportunity to learn and make mistakes without it being ground in their face. Its also like they remind high school and college kids about posting on Myspace. The autistic kids you write about may someday want to get a job -apply to college and possibly get married. How will this info affect those chances to have the life they want to live ?
    Just my perspective. Sorry I got so long.

  • bonni
    Feb 24, 2007 at 2:35 am

    I wonder if it would make people happier and more comfortable if all the parents of autistic children stopped writing about them?

    I’m just curious.

  • Kassiane
    Feb 24, 2007 at 2:59 am

    Bonni, I think that might be going a little far.

    But there is a line that has yet to be defined fully, because, well…no one has been asking autistic kids and autistic adults till quite recently.

    But I know that I don’t feel right writing things about the kids I worked with that I wouldn’t write about typical kids, or that I’d be embarrassed having written about myself. Most autistic kids DO discover the computer and the written word. They may even discover google and put in their own name.

  • Jannalou
    Feb 24, 2007 at 3:49 am

    This is why I am careful to use initials if I need to identify kids at all in my blogs. I’m eventually going to get pseudonyms lined up for all the kids and replace the initials with fake names. Probably the family would know who the post is about, and of course I will, but random people can’t look at one of my blog entries and say, “Hey, I know that kid…!”

    It’s also why I use my real name (well, sort of) - my identity needs to be transparent. I’ll never say if one of my clients was related to someone famous or anything like that, and it certainly limits some of the stories I can tell, but it’s worth it to know that I’m respecting their privacy as best I can while sharing the joy of working with “disabled” children with the world.

  • Stacy Goodson
    Feb 24, 2007 at 11:01 am

    I have heard that 1 out of every 150 kids will have autism.All I know is 2 out of my 3 sons have it.One is 4 and 1 is 5 years of age.I think you guys need to focus more on the now.So everybody will know about this epidemic before it destroys more lives than the black plague!Lets find a cure.Lets not make a freak show out of this.Lets show people that this is happening to people in your own area and in our own family and people are not talking about it because they are ashamed just hoping this will go away,which it will not if more people don’t see the young kids that it is affecting.I am sorry if what I am saying seems mean. It is not my intent . But it seems the media is more concerned about making people go wow look how fast she can type, than My God we must find a cure before this destroys more families and cost our country more than the Iraq war and the Vietnam war combined.Please believe me its more than 1 out of every 150 kids because people are hiding there kids from the truth !But know the truth will
    find you out.And Autism is not going to just go away.Not with out help from the Media.

    Please help !

    Stacy Goodson
    A father of 2 boys with Autism
    http://www.MySpace.com/mrboxing

  • Kristina Chew, PhD
    Feb 24, 2007 at 11:48 am

    Thanks for writing in here, Stacy——Autism is indeed here and here to stay; the prevalence rate is 1 in 94 in my own state of New Jersey. It is unfortunate that the media emphasize “how fast Amanda Baggs can type”: What about the media sayin, thanks for sharing your perspective and views and so much about yourself in public?

    Autism is not an epidemic; it is only now that we are able to see individuals like Amanda Baggs; that we have learned that we need to listen to her and many others.

    I do agree, focusing on “the now”—-on the autistic persons who are with us —– is the main thing.

  • Stacy Goodson
    Feb 24, 2007 at 12:10 pm

    Well I guess we have different Idea’s about what an epidemic is , And if you think Autsim is here to stay! Then I got no use for you or anyone like you.I am sorry about Amanda and her family.Because I am going throuh what they went trough years ago.But when one says its something I must except,I just tell them get out of my way because I am here to help find a cure , and it would be nice if the Media did the same.CNN is seen around the world and is not showing the kind specials that will make people wanna search for a cure , They are only concerned about people standing
    by the water cooler talking about the autistic
    lady that types faster than magic!But I simply don’t give a sh*t about that.I am all about finding the end to Autism in the world and in my Family !

    Stacy Goodson
    http://www.MySpace.com/mrboxing

  • Jannalou
    Feb 24, 2007 at 2:29 pm

    Wow, Stacy, you totally missed the point.

    Also, that 1 in 150 rate is overall prevalence. It includes all ages, from 1-100, and it includes all severities of autism, from “low-functioning” (severe Austistic Disorder) to “high-functioning” (mild Asperger Syndrome).

    Autism has been around for a very long time, and anyone who thinks it is going to disappear needs to get their head out the sand.

    It needs to be cured about as much as ADHD needs to be cured.

  • Stacy Goodson
    Feb 24, 2007 at 2:54 pm

    No you missed my point.I know 10 people who have kids with it but the do nothing because they want it to go away. When I was a kid very few had this now everybody knows a kid with it or a family member.Most are under the age of ten, Some say its from the shots some say it something else.I can care less who’s to blame , But focusing on a 27 year old that nobody can relate to brings very little intrest in finding a cure. Showing the thousand of little boys and girls that look just like your kids exept they cant talk or enjoy anything that comes with a normal life , will do much more!Wake up man!I think you guys are more of
    the problem then anything , This can and will be cured.But the right people being told is the only
    way to get it done.Focusing on the last two CNN
    Autism specials does not do a thing as far as helping this problem.And you need to shut up about saying I need to get my head out of the sand because if everybody did what you are saying nothing would ever get done about this.So thanks
    anyway.Finding the cure is all that matters ,
    So either help out , or get lost !

    Stacy Goodson

  • Kristina Chew, PhD
    Feb 24, 2007 at 2:57 pm

    Stacy, thanks for writing again. I’ve written a lot about why there is no epidemic—

    What if there is no autism epidemic

    An epidemic of discovery

    If I may ask (and please don’t feel you have to answer this), what kinds of therapies or treatments are your children doing?

    And to follow up on Jannalou’s point—

    Definitions: Prevalence & Epidemic

  • Jannalou
    Feb 24, 2007 at 3:08 pm

    I’m not saying do nothing - where did I ever say that?

    I am on my way to pull a respite shift with a 12yo autistic boy right now. I used to work full-time with autistic children - just read my blog for information on that.

    What matters is that autistic people - the people we have here & now - be given every chance to succeed in life as they are. Who a person is is determined largely by their neurology. I know this from personal experience.

    Maybe once we are able to accommodate neurological differences in society, there won’t be such a push to eradicate said differences.

  • Stacy Goodson
    Feb 24, 2007 at 3:41 pm

    What ever !!! Find a cure now , Thats all I am saying my kids get all the theropy, But setting and waiting does nothing.But I do wish you the best for your son.But I beieve ,not hope but believe this is
    curable , and now that this “EPIDEMIC”is growing everday its time to stop talking. Thats all I am saying !

    Stacy Goodson

  • Kristina Chew, PhD
    Feb 24, 2007 at 4:04 pm

    Thanks again, Stacy. There is no epidemic of autism, though it seems like it.

    I have written a lot about my own son Charlie on my blog entitled Autismland. It is great that now we know about so many therapies and can do so much, though not all do. I have learned a lot from my communications with Amanda Baggs and other autistic adults, as I have from my son.

  • Jennifer
    Feb 24, 2007 at 4:14 pm

    You know, if I may take a little aside as I watch the “cure/epidemic” debate…. As a teacher, I sometimes find it hard to find the line between respecting my autistic students’ (I have a non-catagorical class with kids with varying labels) neurodiversity and teaching them.

    In other words, I find myself in exactly the dilemma that’s discused here: the pressure to “cure,” to make E. and M. and E. behave as neurotypically as possible versus respecting what makes them unique and cool and trying to change MY interactions with them to respect their differences while still teaching them.

    I eventually decided that if I could teach skills that allow my students to interact more successfully with the world, even if it’s in their own way, then that was great. I am a teacher, after all, and it’s my responsibility to TEACH.

    But after reading the blogs of adults with autism, I started changing the way I did that. I gave students choices when we were reading in groups of “looking” (reading along) or “listening” because so many adults said it was hard to do both. I didn’t stress over “stimming” as long as it was non-disruptive (for one student, coloring (very pretty) abstract patterns with enough pressure to leave crayon flakes all over), and didn’t prevent disruptive ones (humming while others were reading) but just asked that E. either “sing outside” or request a break to GO outside if she couldn’t wait.

    But I know that all 3 have started learning more academically and seem more relaxed and focused at school. E. has even begun communicating more, both in writing and typing, and with words.

    It’s a fine line, and I’m sure I cross it either way a lot of the time. But it’s a line I didn’t know existed until I started learning about how adults with autism perceived the education they received, and I’ve seen the positive changes that have resulted.

  • Jennifer
    Feb 24, 2007 at 4:15 pm

    As a teacher, I sometimes find it hard to find the line between respecting my autistic students’ (I have a non-catagorical class with kids with varying labels) neurodiversity and teaching them.

    In other words, I find myself in exactly the dilemma that’s discused here: the pressure to “cure,” to make E. and M. and E. behave as neurotypically as possible versus respecting what makes them unique and cool and trying to change MY interactions with them to respect their differences while still teaching them.

    I eventually decided that if I could teach skills that allow my students to interact more successfully with the world, even if it’s in their own way, then that was great. I am a teacher, after all, and it’s my responsibility to TEACH.

    But after reading the blogs of adults with autism, I started changing the way I did that. I gave students choices when we were reading in groups of “looking” (reading along) or “listening” because so many adults said it was hard to do both. I didn’t stress over “stimming” as long as it was non-disruptive (for one student, coloring (very pretty) abstract patterns with enough pressure to leave crayon flakes all over), and didn’t prevent disruptive ones (humming while others were reading) but just asked that E. either “sing outside” or request a break to GO outside if she couldn’t wait.

    But I know that all 3 have started learning more academically and seem more relaxed and focused at school. E. has even begun communicating more, both in writing and typing, and with words.

    It’s a fine line, and I’m sure I cross it either way a lot of the time. But it’s a line I didn’t know existed until I started learning about how adults with autism perceived the education they received, and I’ve seen the positive changes that have resulted.

  • Stacy Goodson
    Feb 24, 2007 at 4:19 pm

    I am Sorry , But it is an epidemic , And the cure will be found soon, with your help or not !I wish you and your family the best ! Peace !

    Remember live in the now, for a brighter tomorrow !
    Planing for a handycaped future does not sound like you have much hope !

    God Bless ya &
    Find a cure !!!!
    Stacy Goodson

  • Kristina Chew, PhD
    Feb 24, 2007 at 4:41 pm

    I hope you can read some of what I have written about Charlie and our autism experience on Autismland, Stacy, and also Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker, for further discussion of all this. Thanks again for your comments.

  • Kassiane
    Feb 24, 2007 at 4:42 pm

    Stacy, look in the mirror.

    You’re perseverating. Perseveration is a hallmark of autism.

    I’d rather be autistic than throwing blame at everyone else.

  • Kristina Chew, PhD
    Feb 24, 2007 at 4:43 pm

    Jennifer, thanks for that comment—-I think what you describe is something of the teaching style we have moved towards with Charlie, both in his home ABA (Lovaas) program and at school (and his classroom is an ABA classroom). I was very concerned about “appropriateness” when Charlie was much younger; I have now learned that, as you describe, his learning is the better for not focusing on “appropriateness.” Would it be all right if I quoted from your comment in a future post?

  • Stacy Goodson
    Feb 24, 2007 at 5:03 pm

    I said I don’t blame anybody, I just said that finding the cure is most important, And should be the goal!I dont care who is to blame the only I care
    about is the person who finds the cure !Its that simply and if you trying to insult me because you
    dont believe it can be done, well so be it , Who needs you no hope folks anyway !

  • Lisa/Jedi
    Feb 24, 2007 at 5:39 pm

    I’m wondering who told you that there is a cure for autism, Stacy? I empathise with the pain one feels sometimes, as a parent who also has an autistic child, but there are many things in this world that don’t have a cure & accepting them doesn’t make one hopeless. I have plenty of hope for my son & my family & we’re very happy people most of the time because of it. I also have a chronic inflammatory condition for which there is no cure, & living with it & accepting it doesn’t make me hopeless, just realistic. I don’t spend time worrying about whether a cure will be found for my condition because my energies are spent otherwise- doing the best to help my son & loving him for who he is. I am learning a great deal from reading & listening to what autistic adults have to say- they are on the edge of the autism frontier & I respect their perspectives very much. They also give me hope…

  • Another Voice
    Feb 24, 2007 at 7:56 pm

    The speed at which Amanda Baggs types does very little to impress me. The quality of what she writes does impress me. It speaks volumes.

    Why her appearance on a TV show should be so upsetting to a few members of the autistic community is something I don’t understand. She has had to overcome huge obstacles and continues to face them everyday. Can’t we just salute her courage, give her a little nod on the way by, and say we are proud to know you? She certainly has proven herself in the arena of human dignity.

  • Stacy Goodson
    Feb 24, 2007 at 10:55 pm

    Of course , She is a brave women with this whole
    world to try and beat , And I am sorry you guys
    could not be apart of finding a cure ,But guess what I am part of it.And I am sure of it people, they will find a cure.Just dont dog me for trying just because you wont.

  • hj
    Feb 24, 2007 at 11:39 pm

    What are you doing specifically, Stacy, to find the cure?

  • Kristina Chew, PhD
    Feb 25, 2007 at 1:51 am

    We do know what helps autistic children to learn and thrive—two things in particular are (1) good teaching tailored to each child’s individual needs (cognitive, sensory, and more) and (2) acceptance of and real understanding about autism.

    There have been a few discussions here previously about the notion (or rather the myth) of “curing” autism.

  • Rochelle
    Feb 25, 2007 at 9:55 am

    Stacy–

    I certainly do not speak for any group or collective entity on this forum, but I’ve been reading this thread and I would like to suggest that you might read around on the site more before posting comments so as to introduce and initiate yourself with this discourse community. It’s considered polite Internet etiquette to indoctrinate yourself to a discourse community and to listen to the conversations before hastily jumping in. After reading your myspace page that you linked up here, it’s clear that you have a very different point of view on the issue of autism, toxicity, and disability that is not shared by many on this list. I think your comments would be more effective and more widely acknowledged if you first understood the forum unto which you are posting and then posted accordingly.

    Because, if I may be frank, your comments are highly offensive to parents, like myself, who believe that they are too part of the treatment and “solution” of autism. Do not misunderstand and misconstrue my commitment to autism research and causes. Your objections to our dedication to the cause (”But guess what I am part of it.And I am sure of it people, they will find a cure.Just dont dog me for trying just because you wont.”) are a misguided attempt to give credibility to your actions and to denigrate ours. When it comes to autism awareness and activism, there is not one hat that only you are wearing it.

    Likewise, your character acts that we “no hope folks” are insulting because I, like others, work tirelessly with our own children. You do not get to proclaim yourself the only one who cares about your children (with the inverse true that we don’t care about ours) simply because we take a different approach to autism awareness and research.

    If you are *really concerned* about autism research, perhaps, you might broaden your scope of inquiry so as to include different points of views, rather than to engage in character attacks against parents who care just as much about their children as you do about yours. While I don’t believe any one on this forum objects to reasoning debate regarding issues in autism research, I do believe that comments that include personal insults are inappropriate and counterproductive. Just as it would be highly inappropriate for me to comment on your myspace page telling you what a complete ass I think you are, it’s just as inappropriate for you to comment here telling a parent like myself that I don’t care about autism treatments.

  • Stacy Goodson
    Feb 25, 2007 at 8:36 pm

    O.K. O.K. I am a gonner !!!!!!

    Your right I don’t belong here.I am here to help find the cure that you don’t believe exist.But I will continue to raise awareness and help the people that have watched CNN know that this “EPIDEMIC”is going no were if we don’t take it out as the monster it is.Hopfully one day you and your children will be able to thank me for not giving up like you apparently have.And just so you know the world is round and the Boogie man lives and it’s name is Autism !

    Thank’s to my brothers and sisters in Autism

    Stacy”Goodnight”Goodson
    http://www.MySpace.com/MrBoxing

  • Kassiane
    Feb 25, 2007 at 9:10 pm

    Autistic people are not monsters. YOUR CHILD IS NOT A MONSTER. If you insist on considering said child a monster, GO TO CPS NOW. Do not pass go. Do not collect 200 dollars.

    People who insist as seeing us as such tend to behave like monsters though. You’re in REAL esteemed company, Stacy. With some real winners (that was sarcasm. Major, dripping sarcasm. Autistics-now with 40% more sarcastic comments).

    We don’t need a cure. We are not broken. I have not given up hope in ANYTHING because I never WANTED a cure, I wanted ACCEPTANCE and still believe it can be done.

  • Stacy Goodson
    Feb 25, 2007 at 9:21 pm

    Well you are a damn fool to think I would call my baby’s a monster if you was here I would slap the stupid look right off of your face.Don’t you ever say anything about my boy’s like that.EVER! This thing called Autism is the monster, Again don’t ever put words like that in my mouth again you tool !

    Stacy Goodson
    http://www.MySpace.com/MrBoxing

  • Kassiane
    Feb 25, 2007 at 10:12 pm

    Read your words.

    Like it or not, your kid is autistic.

    JUST. LIKE. ME.

    If you think autism is a monster, and say so in front of your child, he’s gunna make the exact same leap I made. A lot of autistic kids do, I’m just going with the stats.

    I hope you don’t kiss your mother with that filthy mouth. Thought you were going. Please. Go.

    You threatened me with assault, so if I were you I’d not come back and do it again, or I WILL be requesting your IP address and getting local law enforcement involved. I do not take threats lightly. Public warning issued.

  • Stacy Goodson
    Feb 25, 2007 at 10:25 pm

    The problem is this !!!No one was looking for a cure when you were growing up , So how is it fair that we are looking and will find a cure now?Sorry!! You can turn my words anyway you want.I was only here to talk about how foolish it is that CNN will not tell the rest of the story , and only wanna praise ye with no hope.I am as I am everywere to bring the word that there
    are little boys and girl that can be helped and not just you few with no hope that don’t want the cure found because it maybe to late to help them!

    And if you want me gone go back to your little
    topic of no hope. I was here for the ones who have hope for a brighter tomorrow.And I love my boy’s
    thats why the Monster Autism will not rest in my house as he does yours !

  • Kristina Chew, PhD
    Feb 25, 2007 at 10:52 pm

    Stacy, I appreciate your commenting here and understand that people have different positions on these topics. But I hope we can stick to basic rules of courtesy—we ought not to act as “monsters” ourselves.

    It is all about hope and describing autism in terms like “monster” does not contribute to this.

  • Stacy Goodson
    Feb 26, 2007 at 9:47 am

    And I SAY THIS …… Autism is not a friend,It comes to my family like thief in the night years after my boys were born , Changing my hopes and dreams for them for ever.To say its a friend of my family would be the furthers thing from the truth.I love my boys and as long as there is air in my lungs I will fight this and search for a way to remove it from our lives for ever!

    Thanks
    Stacy Goodson
    http://www.MySpace.com/mrboxing

  • Kristina Chew, PhD
    Feb 26, 2007 at 9:51 am

    Stacy, I think that is the most important thing all of us feel—deep love for our children and great hope for their lives and futures.

  • Stacy Goodson
    Feb 26, 2007 at 10:10 am

    For sure !

    But

    Find the cure !

    Stacy Goodson
    http://www.MySpace.com/MrBoxing

  • Kassiane
    Feb 26, 2007 at 4:22 pm

    I think we need a cure for ignorance way before we need a cure for autism.

    NO ONE autistic has EVER raised their hand when I’ve asked who in the room is broken. I get lots of neurotypical takers who think they’re broken.

    Cure ignorance and hatred and repetitive hate messages on blogs. Don’t cure me. Cure people who spend time blogging on myspace about how their kid is toxic and use tired changeling rhetoric they stole from CAN about their kid (so which is he? toxic or a changeling? I’ve been accused of being a changeling by my family. The bath in holy water didn’t cure me. Neither did the anointing with oil, for those keeping score). Cure people who throw horrible words about autistic people around

    then say autism is seperate from us

    when we know it isn’t.

    Find THAT cure.

    We don’t need one. But they sure do.

  • Crystal
    Feb 27, 2007 at 4:40 pm

    I have two sons on the spectrum. When I first found out they were Autistic I was broken hearted. I knew nothing on the subject and had a professional telling me they had no chances without this or that and there is no cure so on. That was the scariest thing to hear in my life. Yet at that time I knew nothing just the word Autism. I got very depressed and felt very sorry for myself and them. I was embarassed to face public.
    I started researching on the internet and buying every book possible. I got obessed with it and it still to this day consumes my life. I love reading about it and I am learning more and more and over the past year I have became so proud of my sons. I realized that I was not helping them trying to change things I could not change. Before I knew it they took off. It took me learning more and more. Everyone fears the unknown. I have always been very opened minded and that certainly helped. I dont want a cure for my sons. I would have two completely different kids. In some way Autism has became a blessing for my family and I embrace it. I understand it has some challenges but what parent doesnt face that?
    I try everyday to show my sons how much they mean to me and they are perfect just the way they are. They are very bright affectionate and so full of life. They have taught me so much more to life. I certainly am not the same person. They have made me a better person and a stronger person. I still have these so called professionals telling me they cant do this and that or may never. My additude is you just watch them. They had already proven them to be wrong in so many ways.
    They have emotions just as any kid and they need to know that a parent believes in them and is very proud of them. No kid wants to be thought of as not making it without some miracle cure unless thier life is threaten. I were certainly perfer Autistic kids than for them to have cancer and I am thankful. It disturbs me that alot of times its compared to life threatening illness. Like it took thier kids away. My kids are still here and if I can turn back time and have so called normal children. I would and could not dream of having different children. They are perfect just the way they are and always seem to manage to put an happy tear in my eye. I am so proud. Far from being some monster.
    Its not the kids who need a change. I made my changes I am the adult I am the mother. It is my job to make them feel special and make them understand people will be ignorant but to keep going and not let anyone stop them.
    I appreciate all the adults on the spectrum. Cause it was the help of them. I started to research on adults on the spectrum when something in my gut told me to. Come to find out after having a long heart to heart with my father and putting together alot of pieces together over the years my brother and I might be on the spectrum as well. I always felt something different about myself and all thanks to my sons and researching other adults on the spectrum I now know what makes me different. It is just I never heard the word Autism untill my sons were diagnosed. My brother and I lined up our toys both had speech delays both have social problems and so on but back then things were different. I am very happy to know what was going on all this time and I am very comforable about it. I just wish I knew something sooner so I didnt drag my sons through hard times back then and would had been able to be a better mother to them then. I too was ignorant about it. Not as bad as some but I was. I never went as far as calling it a monster.
    Sorry I had so much to say and typed away. My only point is I dont want pity for having two kids on the spectrum I only want people to see what I see in them everyday and stop treating them as if they damaged. They are very happy bright fun loving kids.
    One more thing I am sorry to anyone else on the spectrum who has to deal with such ignorance. I havent had an official diagnoses yet for myself but looking into it and very excited to know. I wish everyone the best and if we can make just one person see that being different is not being broken then it is making some progress. Just sorry to see some like to fight with the real professions on the subject (Autistics themselves)who are indeed the real experts and from what I see you handle it in a very mature way. Its also very sad that a parent of an Autistic child will not listen to Autistic adults. After all Autitics are the real experts. Thanks for taking time to read……..Crystal

  • Another Voice
    Feb 27, 2007 at 7:12 pm

    Crystal,

    This was a beautiful post!

  • Crystal
    Feb 27, 2007 at 9:38 pm

    Thank you I could type forever on this subject. It is my world. Besides I was sad to see some of the post here. I seen some people have some growing up to do and fast. Before it damages thier kids self esteem. Self esteem plays a major role in an Autistic person just as anyone else. Thats the problem people forget about thier emotions. Just cause they sometimes do not communicate they forget the kids do understand. It would certainly hurt my feelings having someone talk about me in those way even if I couldnt communicate that it hurt.
    Like that Autism everyday video and the mother talking about how she wanted to drive herself and her Autistic daughter off a bridge. The reason she did not was for her other child who was not on the spectrum. What made matters worse was her daughter was right in the room. I call that emotional abuse. They teach you when you are divorcing not to talk bad about the childs other parent because it can really hurt a kid. I dont see how talking negative about a child having Autism is any different. That angers me to see parents act this way and especially right in front of the children.
    I got so much hate mail for expressing my anger towards that mothers comment on my myspace. I know I went through struggles but never did I want to end the lives of my sons. I gave them life and you know what they gave me a life. I owe them my life before them my life was meaningless.
    Anyway I just hope to see parents like this change before its too late and do some serious hurt to thier childs feelings or maybe even leave an emotional scar. Those are the worst scars they never heal as easily.
    Thanks for all your kind words……Crystal

  • Kristina Chew, PhD
    Feb 27, 2007 at 11:37 pm

    “Its not the kids who need a change. I made my changes I am the adult I am the mother.”

    Crystal, I can’t thank you enough for these words—-they sum up so much. And I also can’t think you enough for your comments which say so much; say what needs to be said: Thank you.

    Warmest wishes to your family from Kristina Chew

  • Crystal
    Feb 28, 2007 at 10:07 am

    Sorry that the subject was thrown off. Anyway we have NTs with all sorts of different iqs just as we have Autistics with all sorts of iqs. We have NTs who dont always have the skills to live independantly just as there are some Autistics. The differance is the two minds think and learn differently. I personally feel unique minds make the world a better place. There is alot of things around that Both NTs and Autistics use everyday of thier life that some very bright Autistic mind came up with. Just like there are things around NTs have created that certainly helped change things. Truth is Nts and Autistics need eachother without one our world may not function as nicely. I would bet every dime I have right now if it werent for Autistics we would not have these nice things called computers to be put to use. There is alot of great art and music in this world because of brillant Autistic minds. In so many ways both types are the same but yet unique enough to make it work. It is just no one takes the time to look at past the negative to see some of the great things about it. There are so many adults of the spectrum making a difference in the world today and in history there were some who changed things. We are blessed to have had people like….
    Albert Einstein most people did not think of him as smart when he was little. They thought he was hopeless. He did poorly in school and he was a late talker. Boy did he prove the world wrongly.

    Isaac Newton who was believed to create a math we know today as calculus. He was also one of the greatest scientist who ever lived.

    Thomas Edison was an inventor. This man gave us a light bulb and batteries. Wow lol I would like to see NTs live without those for awhile.

    Well anyway there are so many of them. I can proudly say that I have two sons who think in ways these great men had.

  • Stacy Goodson
    Feb 28, 2007 at 10:21 am

    Don’t worry set back and take it easy guys!

    But me and many others are fighting for your children to have a choice to live a normal
    life of enjoying EVERYTHING life has to offer were
    they don’t have to depend on others from now on.
    It’s sad that you have to make this choice for
    your kids.Because mine are my everything and
    I will never give up on them ,EVER!!!!

  • Stacy Goodson
    Feb 28, 2007 at 10:42 am

    http://slugout.com/posters/RR3-small.jpg

  • Crystal
    Feb 28, 2007 at 12:48 pm

    I am sorry to hear your kids dont have EVERYTHING life has to offer that is so sad. WOW I am lucky cause mine do. I am sorry you want a normal life for your children. That is really sad too. I am lucky again cause mine do. But then again it seems you and I dont agree on whats normal. Oh well alot of people dont really know how to describe a normal life. Its really sad they are not enjoying everything life has to offer. Once again my kids are full of smiles giggles and laughter.
    Now the depending on others thing I am kinda blown away. See I didnt know that kids were born and was self dependant. I always thought they were born and ALL kids took many years to learn how to depend only on themselves.
    It is kinda sad that my kids are so full of giggles laughter smiles and affection it is kinda sad they had to depend on me from the day they were born to cook clean teach them and guide them. Heck I thought thats what parents do with any child. And it is so sad that they have so many goodthings life has to offer. Such as a life and they are not dying from some illness.
    My goodness where did I go wrong? Ahh I know what it is. I stand beside them instead of in front of them. I defend them against those who say they wont amount to anything cause they are disable. I also say they are not disabled they are just behind and need some patience and alittle help. I also take the time to get into thier heads and learn about what they like and get interested in things they like. They reward me by wanting to know whats in my own head and wanting to learn more about it. Geezz I have been so wrong.
    I dont need your fight. There are so many kids dying who need you fight. My kids are healthy strong and pretty much happy with life. At least fight for thier right to be understood or accepted.
    One thing I will have to say I am doing right since I am so wrong for my mothering is I accept them and believe they can make it without wiping the Autism that is apart of them away. So that will be good when they are teenagers and have somewhat of a self esteem. At least them I dont have to worry about teen suicide as much because my kids will feel accepted from someone. In case you dont know kids grow into teenagers and thats a very hard time in life to feel broken and not accepted and the main reason for teen suicide is feeling worthless and not accepted. It wont be my sons and I hope some of these parents realize that before it is too far gone. Noone wants to feel worthless of a disappointment especially to thier parents.

  • Crystal
    Feb 28, 2007 at 12:53 pm

    Just to let you know. I am not fighting with you. I am just trying to show a point in hopes that you will see. I am also defending my own children in a world that people do not accept them for being different. I just hope someday people will see the beauty in thier unique ways and how creative they are. They are no different from anyother kid. They just require more love understanding patience and dedication. They really do blossom when you come to terms and accept them. Instead of trying to change them just try showing you they dont need to change to make you happy all they need to do is do the best they can.

  • Kristina Chew, PhD
    Feb 28, 2007 at 1:03 pm

    Stacy, I prefer not to use language like “fighting” in regard to our day to day existence with autism—-rather, it is process of growing, and learning, for everyone.

  • Stacy Goodson
    Feb 28, 2007 at 1:10 pm

    I can really care less about your smart a*s reply’s.You know I am not wanting to be apart of having your Gov checks takin away , No I am just trying to help in the fight with the mom’s and Dad’s that want there kids to be able to play sports in school be homecoming Queen or the star QTR back , Or maybe a doctor or a lawyer . What ever they want to grow up and be , And I promise you this! If this Amanda was given the option to get out of her wheel chair and live the life that we all take for granted , she would ! I am happy she has learned to cope with the cards she has been given ,But I wanna be apart of something that
    will give people the choice to live
    another way !Because my boys are my everthing.
    And sure it would be easy just to set and
    draw a check and let them stay 3 years old
    forever . But the problem is I am not gonna
    live for ever.And I wanna make sure when I am
    gone they are living the best life they can !

    There is a cure but we have to look for it!

    Stacy Goodson
    http://www.MySpace.com/MrBoxing

  • jypsy
    Feb 28, 2007 at 2:07 pm

    Ok, I’ll bite…. what does autism have to do with keeping kids from participating in sports in (or out of) school?

  • Crystal
    Feb 28, 2007 at 2:18 pm

    You are very ignorant if you think Autistics can not play sports or have a career in life. Ever thought that maybe that is not thier thing to do?You are also very ignorant to assume people collect Government checks because they think differently than you do and even if they did how does that make you better considering you yourself barely get by? By the way I am not assuming you make very little I actually looked at your myspace and seen. Boy you got alot to learn. Also speak for yourself when you say take things for granted cause you have no clue on what I had been through and what I accomplished. One more thing thanks for the compliment about being a smart a** I take pride in being a smart educated person. Not that I am a genius but you obvisously know what I mean.

  • Crystal
    Feb 28, 2007 at 2:32 pm

    One more thing say what you want cause I have no more responses to you. The best way to handle people like yourself is to ignore. We know how much you would hate that. So that is just what I am going to do from here on out. I was hoping maybe you might see my point but you are to blind to see past yourself.

  • Kassiane
    Feb 28, 2007 at 3:01 pm

    Oh shit.

    I can’t play sports because Im autistic?

    Someone needs to tell my gymnastics coach. And retroactively remove everything I did in basketball, volleyball, soccer, diving, and 6 years of power tumbling.

    Someone probably needs to unteach my old students how to tumble, too…

  • Crystal
    Feb 28, 2007 at 3:17 pm

    lol Now that was great. Just like the Jay Mac kid did not get famous cause he was poor at basketball. lol oh my I better give up college while you give that up cause you know Autistics have no chance on careers either. After all our families all have to live on government checks. Since we cant depend on ourselves.
    I think he just feeds off arguing and he will be back to say some more ignorant stuff. At least untill he is ignored for it. People hate arguing when no one argues back. Besides there is no helping the guy so I give up.

  • jypsy
    Feb 28, 2007 at 3:43 pm

    Yeah, Kassiane, you were the one who *sprung* to mind right after Alex. BTW, did I ever share this with you?

  • Stacy Goodson
    Feb 28, 2007 at 4:17 pm

    Well my youngest son is 4 he has all the theropy
    in the world. Plus I feel I have NOT slept a day since this has all happen .He still acts like he is about 18th mnths old,, some times he is happy , some times he will cry for hours.I cant ask him whats wrong ,because he cant speak, So some times I just cry with him. So let me say this as nice as I posibly can , ALL OF YOU CAN BURN IN THE PIT OF HELL IF YOU THINK I WILL EVER STOP LOOKING FOR A CURE !

    And I am sorry I posted here on this no hope forum!But if you realy want me gone Shut Up about
    me !!!! And simply I will be gone !Just like that!

    Thanks
    Stacy Goodson
    http://www.MySpace.com/MrBoxing

  • Crystal
    Feb 28, 2007 at 4:34 pm

    Ok with that said. I am sorry I never introduced myself I actually checked a bullentin on myspace that was a link to here. Thats how I ended up here. I wanted to introduce myself first but my mind got clouded with other thoughts of what I wanted to say. Anyway my name is Crystal. I have 2 sons on the spectrum ages 4 and my oldest will be 7 in april. I am in the middle of getting a diagnoses myself and my soon to be husband is on the Aspergers spectrum. Yea so everyone in my house is on the spectrum. At least that we know. I have yet to seek out mine.
    I apolize to anyone I may had ticked off by not getting to know you before leaving my thoughts on the subject that was being talked about. I am also sorry that it has NOTHING to do with the original topic but I seen what was going on and had to say what I felt. I meant no harm to the people who are regulars here. In fact I admire you all from what I had seen. I hope you didnt mind me speaking up my thoughts to the issues I felt I wanted to speak up on.
    Thanks to those who said such sweet things. :)

  • Kristina Chew, PhD
    Feb 28, 2007 at 4:36 pm

    Witness and Hope could be a subtitle for this weblog–it was the name of the Oct. 27, 2006, conference on Autism and Advocacy held at Fordham University and organized by my husband, Jim Fisher.

    Charlie is a great athlete—ocean swimmner and 10-miles plus bike rides. And a great walker in the city and all over.

  • Lisa/Jedi
    Feb 28, 2007 at 4:54 pm

    Although my son Brendan has little interest in team sports, he’s also a good swimmer & is becoming a great sailor. We started taking him out in the boat when he was 3, after 18 months of swimming lessons (& always with a life jacket!), & he’s sailed for fun every summer since. This past summer, at the age of 10, he crewed his first race with his dad & they won, beating 40 other boats… I see him as on the road to being a life-long athlete. :)

  • Rochelle
    Feb 28, 2007 at 6:15 pm

    It’s nice to meet you, Crystal. I’m pretty new here, too. I have a six year old son who was diagnosed as moderate autism last May, and I found my way to this blog, actually, from a link on Kassaine’s blog while reading around.

    I appreciate your comments earlier in the blog.

    Welcome aboard…

  • Crystal
    Feb 28, 2007 at 7:59 pm

    Thank you Rochelle it is also nice to meet you as well. :)

  • Moi ;)
    Mar 1, 2007 at 11:52 am

    Kristina - I just wanted to tell you that I agree with whoever said each autistic is different, and what they might like or not is as individual as they are.

    Bug has told me that he doesn’t mind my putting his photos on the internet, as long as he’s not “doing something dumb.” That’s a 14 yo for ya. ;)

    That said - Gang, Please Don’t Feed The Trolls….!

  • Kassiane
    Mar 1, 2007 at 4:32 pm

    Wow Jypsy, all the autistic athletes and I bounced into your head after Alex? That’s an honor (especially since there’s no way I could keep up with him!)

    Lots of autistic people do things we “will never do”, every day. Ugh. My gymnastics coach used to be a special ed teacher and she laughed herself stupid when I told her autistic people can’t do gymnastics-a piece of wisdom my old coach picked up from another coach at a meet. And there’s a little Aspie kid on my team, she’s about 7 or so.

    There are more runners and swimmers than gymnasts and such, I think. Gym is a weird sport….but it’s OT for cheap!

  • jypsy
    Mar 1, 2007 at 4:55 pm

    Kassiane, I wish you were around to coach my Aspie son. Soccer has always been his sport though he played every school sport, was a good wrestler and even won Male Athlete of the Year when he graduated from Jr. High. We’ve had a trampoline since he was 5 and a couple of years ago he discovered “freerunning”. Now he does “street gymnastics” and wishes there was a place he could go with mats etc and people in the know to learn and practice. The local “Gymnastic Academy” is not very open to it….. At this very moment he’s out downhill skiing. Of course he can’t just go downhill….. there has to be a jump or a spin or …….

  • Kassiane
    Mar 1, 2007 at 5:58 pm

    well of COURSE there needs to be a jump or a spin…I’m the same way on my snowboard. Scared the beejeebies out of an instructor, go down the hill my first time, then hit the pipe and do a flip within 10 minutes. “what, I’m a gymnast and wearing a helmet!”

    Our gym used to have an open hour every saturday for the local kids who were into freerunning, they could do wallflips and gainers and stuff with spotters and landing mats. Then they stopped coming because of school. It’s too bad more gyms AREN’T open to it because it’s a big market and it gets boys into the gym…a couple guys on Men’s Team also do the street stuff, they do some in warmups and at the end, and do the “serious gymnastics” in the middle. But we’d have never gotten them on rings and high bar if the coaches hadn’t said “yes, we’ll teach you (whatever)”.

  • Janna’s Thoughts… » Functioning in the ‘now’. - …a place to capture the otherworldliness of thought.
    Mar 3, 2007 at 12:48 am

    […] What I find most interesting are the people who, like Stacy over at Autism Vox, continue to say that we are giving up, that we are not about hope, that we don’t want anything to be done about autism. […]

  • Ms. Clark
    Mar 4, 2007 at 1:49 am

    jypsy. one word.

    Moe Norman. Oooops, that’s two words. :-)

  • Kristina Chew, PhD
    Mar 4, 2007 at 2:04 am

    As it happens, Charlie has been doing gymnastics in PE for the past few weeks at school and excelling—- yes, we’ll get him out on the links sooner than soon.

  • Autism Vox » Varieties of Asianness, Varieties of Autism
    Mar 4, 2007 at 11:36 pm

    […] In Assorted things I’ve meant to say, from the other side of the usual time-barrier, her post about her CNN interview on February 20th, Amanda Baggs writes about the experience of being interviewed on national television. Baggs comments on the reactions of others to her television appearance; on her own reactions on seeing her taped appearance (her first reaction was that “I didn’t belong there”; she also notes that, due to the experience of feeling (very understandably) “terrified” with cameras and television reporters following her around all day,” I looked a lot more autistic than usual (I don’t know any other way to put it)” ); and people who she had not known before who have contacted her after the interview. about the varieties of the lives of autistic persons We’re regular people, with regular, messy lives. We don’t fit into tidy categories. If ever a group of people didn’t read the rulebook when being born, it’s us. Many of us have additional things going on besides being autistic. Michelle Dawson has a visual impairment, Sharisa Kochmeister has CP, Gunilla Gerland and Donna Williams come from unstable families, Thomas McKean has a fantasy world and hears voices, Gunilla Gerland and Jerry and Mary Newport have all done drugs of some kind at some point, Dawn Prince-Hughes was an exotic dancer, Jim Sinclair is intersexed, Jeanette Purkis was involved in crime and at one point diagnosed with a personality disorder, Donna Williams and Thomas McKean and Adriana Rocha and a number of others have talked about experiences that most people would consider paranormal, Georgiana Thomas saw demons when she was younger that vanished when she became a Christian, Adriana Rocha thinks she’s the reincarnation of John the Baptist, Jerry and Mary Newport as well as Donna Williams have savant skills, Sue Rubin has Noonan’s syndrome, Kassiane Sibley has Rett’s syndrome, Jim Sinclair and Laura Tisoncik use wheelchairs, Jim Sinclair and Mary Newport have both talked about losing various skills at certain ages older than the usual so-called “regression” age, Sondra Williams and Jerry and Mary Newport and Liane Holliday-Willey and Donna Williams and Dawn Prince-Hughes are all in marriages or committed relationships and some of them have children, Liane Holliday-Willey and some others can fake normalcy enough to pass, Donna Williams and some others have had personas they used in order to pass, many of them had prior misdiagnoses of mental retardation or schizophrenia or personality disorders, and so on and so on and so forth. […]

  • Stacy Goodson
    Mar 5, 2007 at 11:48 am

    >>>Janna’s Thoughts… » Functioning in the ‘now’. - …a place to capture the otherworldliness of thought. Says:
    March 3rd, 2007 at 12:48 am

    […] What I find most interesting are the people who, like Stacy over at Autism Vox, continue to say that we are giving up, that we are not about hope, that we don’t want anything to be done about autism. […]

  • Stacy Goodson
    Mar 5, 2007 at 11:50 am

    >>>Janna’s Thoughts… » Functioning in the ‘now’. - …a place to capture the otherworldliness of thought. Says:
    March 3rd, 2007 at 12:48 am

    What I find most interesting are the people who, like Stacy over at Autism Vox, continue to say that we are giving up, that we are not about hope, that we don’t want anything to be done about autism.

  • Stacy Goodson
    Mar 5, 2007 at 11:51 am

    My Reply : Ok , Like before I came here by mistake
    for that I am sorry , I for sure don’t want to be apart of a group that is not searching for a cure
    for Autism.And to the person that was saying I am a troll , Give me a break , I dont wanna be apart
    of your no hope group , but if you want me gone
    just dont talk about me because this troll is always gonna defend himself and his family !We will find a cure and you can stay in the dark as long as you want.

    Stacy Goodson
    http://www.MySpace.com

  • Kristina Chew, PhD
    Mar 5, 2007 at 11:56 am

    Stacy, thank you for being a part of the conversation.

  • jypsy
    Mar 6, 2007 at 5:31 pm

    Ah, yes… “cousin” Moe :)
    And yes, I am a hopeless optimist. My (e)mail box is full of hundreds of letters from people thanking me for giving them hope over the dozen or so years my site exisisted.
    “No hope”? No way!

  • Sarah
    Mar 6, 2007 at 6:40 pm

    The hope comes from us knowing there will
    be a day when Autism is out of our childrens life forever! Soon real soon !

    Sarah

  • Kassiane
    Mar 6, 2007 at 7:20 pm

    MY hope comes from knowing the ISNT is hard at work…

  • Sarah
    Mar 6, 2007 at 8:41 pm

    ok ???

  • Crystal
    Mar 7, 2007 at 1:29 pm

    You certainly do not speak for this mother of two on the spectrum. Also a soon to wife of an Aspie not to forget both my brother and I are also on the spectrum. Oh wow Autistic people are capable of growing up to have lives like NTs (if they choose) some perfer being alone and I certainly understand. MY hope is for MY sons is for them to grow up reaching thier potential in life. Being the best Autistic men they can be. I do not wish to change a thing about thier unique ways. MY MAIN hope is for people like you to someday accept them for all thier unique ways and understand that just because someone is on the spectrum does not mean it is a tragedy. The only tragedy I see with Autism is ignorance.

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