The recent media attention is, despite being non-hostile, quite grueling. I am very introverted by nature and am not used to this kind of thing — it feels like a necessary evil to get a message out, and I find myself wishing I didn’t have to be the messenger. I am not sure how much I will post in the near future. (I might post something about the story itself, though.)
Feb21
Ballastexistenz 
I feared/expected you to say something like this soon. Replying to your previous entries:
I never thought of you as intelligent “for someone who can’t even talk.”
Just intelligent as judged on its own merits.
Thank you for finding a way to tell the world things many of us wanted to say but were incapable of communicating.
If I were some asshole journalist I would say something like “How ironic that someone who can’t even talk would find a way to say the one thing that none of us could.”
But I’m not one of those people.
I hope this media attention does not cause you to give up your work for too long. Do you have any suggestions for how I could make a living helping you get the truth out? I would quit my job in a second if I could do that. I plan to quit anyway.
Having no internet access makes staying in touch with your writing difficult, and it often makes me ashamed to not know as much as you do, but I try when I have free time at the library here.
That is all.
Yeah, you’ve been working hard. Vacation time!
Ballastexistenz,
I was touched by your website. It also offered me a new perspective on disability and the attitudes of others toward disability, and I will be thinking for a long time about many different things you have said.
One of my friends has a son, age 19, with autism. He is also deaf, like me, and like his mother and father. I have often wondered if autism is simply a normal variation of humanity, like being deaf.
Deaf people have their own language. Suppose we find the “language” of autism, in whatever form it is, will we be able to unlock the autism spectrum and welcome all these people into the greater society?
I think may of the problems we see is due to the attitudes of the so-called “normal” people who think of us as deficient in some way. I don’t feel we are deficient at all, just unique and rich in our own ways, and all we need is to be understood and accepted, and appreciated in just being us.
Thank you for your blog. You are contributing very valuable wisdom and perspectives to the world and that alone is a gift. Please keep it up, and God bless,
Diane Plassey Gutierrez
I have been lurking here quietly for a while. When I saw the headline on cnn.com, I thought wow! I need to send Amanda this link! Then, I read the story.
Somehow I think you already know about it.
Just want to drop a line and let you know that your voice is being heard.
-Laura
Hang in there, being a nurse, I find your site very informative. I know you are only a messenger for yourself and don’t speak for others. But it does give me insight into a world which I did not know about. Keep up the good work, and yes sometimes it is work.
Thank you for articulating what I have tried to all my life. Thank you helping me feel normal. I am only sorry that you have to hold the burden of attention.
Hi,
Your video is a powerful reminder of what it is to possess personhood. I am going to require that my students (I teach philosophy) watch the video so that they can better understand the nature of language and community.
I hope that you decide to write a book someday.
Thank you so very much!
Signed:
Someone who loves an autistic child with all her heart.
You spend time ‘regrouping’ dear, we’ll be thinking of you.
Best wishes
Thank you for doing all of this. It is so important.
Amanda…I have a little boy that is almost 9 with autism. He is the sweetest child and the absolute love of my life
As a mother of an autistic child, the hardest part for me has always been the desire to know what was going on inside his mind…his inabilitiy to communicate leaves me with so many unanswered questions.
Please take as much time as you need, but i would be so greatful if you could email me…I am hoping you can help me understand how I can better help my son.
Thank you
Laura (Daniel’s mom)
Vancouver Canada
I’m not surprised to hear you say this. I am, however, quite impressed with you for doing it all. Brava! :)
Amanda, I just saw the special with Dr. Gupta on CNN and you are truly amazing. As a future educator who has only a cursory knowledge from SPED class about Autism Spectrum Disorders, would you be willing to give me and my colleagues some advice (whenever you feel like it at my e-mail address) regarding what you think teachers (not SPED) can and should be doing to help autistic children reach the potential that clearly may be there inside? Thank you for sharing your video and your life – you are a beautiful person! Christy
(christyr2003@yahoo.com)
After seeing your special on CNN and rushing to the computer to see your video and blog, I’m disappointed to see this post. I’ve read quite a few of your previous entries, and beyond appreciating your sarcasm, I see a lot of similarities between your frustrations with autism and frustrations I have with depression. This definitely is not what intrigues me most, though. Your descriptions of interacting with your environment, and your use of your senses – you seem so appreciative, and I admire that. I immediately thought of preparing a box full of goodies that are interesting to touch, smell, hear, and taste.
Anyway, I’m rambling. I’d love to chat with you some more, and I hope that once the media attention calms down a little, you’ll feel comfortable posting here again. I know that if more than 4 people read my journal, I’d think twice, too. (even though I post nothing but ramblings similar to this comment…)
Thanks for sharing a bit of yourself with us.
You are exceptional, no doubt about that. No less exceptional than any of the (relative) few who made real difference in this world, and managed to rise to the awareness of many others, touching their lives, inspiring and teaching and healing and making the universe worthy of our short visit, and our short visit worthy of the universe. I am humbled by your greatness and courage and beauty, and grateful to have had the opportunity to be touched by your message. It is my hope that you will remain the messenger, as you do it extraordinarily well. It is my greater hope that you will deem every moment of your existence a rewarding and happy experience. Your language may not be the one I understand, and I thank you deeply for speaking my language.
thanks for the CNN interview and, even more, for your recent comments on my blogs.
I missed the interview, unfortunately – are they going to put it online somewhere?
What is it regards to or is this just a surge of the typial media response? Either way, I’m hoping you are doing ok. I have had my own issues to deal with lately as well.
I was very interested in the Amanda story and I am at this time moved to respond to Amanda. Help is on its way.
Thanks for what i’ve seen so far, perhaps it would help you to know that you’ve opened my eyes and broken down some misconceptions that i know that i had.
Thank you for the effort this must be taking, perhaps a vacation is in order :)
Valis
You must take as long as you need Amanda.
My 10 yr old daughter has been diagnosed as having Sensory Integration Disfunction. She sometimes gives me glimpses of very high functioning Autistic behavior I have seen in others in the past. I find myself frequently very frustrated at her inability to listen to me when I am talking to her, or that she cannot seem to remember instructions just minutes after saying she understands. Can you direct me to some resources that will better help me to understand, appreciate, and help my child?
Thanks!
M.J.P.
I was wondering to ask if you were alright because your last few entries have been uncategorised. Of course, I am probably reading too much into it. As an introvert myself (part from when I’ve had a few Black Sheep Ales in which case I get a tendency to sing :D) I sympathise with your feelings regarding the media attention. I could not cope with media attention myself.
If you need to, take some time out and spend time doing whatever you need to feel more comfortable. Your blog is great to read, but your wellbeing is more important.
Ok. I see you made CNN. I’m having insomnia again. It’s 5:58am. I finally came across it via other channels.
Um … what exactly has this recent “media attention” consisted of?
Take a well-deserved rest and get your energy back! Great job getting the message out. I’m sure that many people who are involved in civil rights and other important causes sometimes wish they didn’t have to do it, but they see it as part of their responsibility to the world.
Your turtling is completely understandable. Hang in there!
I just wanted to thank you, so much, for your courage and insight. I’m a “normal” with an autistic nephew, age 7. Your analogy that communicating “normally” is akin to doing calculus in your head just to say hi, was an eye opener for me. I wish you well and thank you again :)
I understand, but thank you for whatever you do write. It is an eye-opener.
you have opened so many eyes
Thank you Amanda for getting this important message out. I hope you don’t feel overwhelmed and get a much deserved rest.
Thank you so much for doing the CNN story. I’m sorry that it is overwhelming. I think it would be for anyone. My 8 year old son may have Asperger’s. Something I am trying to understand is that it seems like NT people who are verbal don’t pick up on or completely block out all the non-verbal ways we communicate. They don’t notice the sounds, colors, patterns, temperatures, unspoken feelings or atmospheres around them. My father is an artist, and I am a singer/actress. We are considered eccentric sometimes because we see things other people don’t notice or care about. We focus on details. We write nine page letters to eachother about details, colors of the sky, what people looked like, the sound of someone’s voice, etc and I wonder if that is something that autistic people are just tuned into better? Especially when your brain doesn’t have to focus on speech? I am what is considered NT, but there are times when I want to communicate about a color or the things I see when I dream or daydream that I can’t communicate in words about. I know what I mean, but I can’t quite put it in English or even words, maybe a drawing or music. But it doesn’t mean that it isn’t intelligent thought. Am I understanding what you are saying in your video? Is this anything close to what you mean?
I would be honored if you found the time to respond, but if you don’t I still want you to know how grateful I am for your work for human rights! God Bless!
I work with children with Autism. I watch everyday the parents and teachers (myself included)of these children struggle with ways to help these children exist in “our” world. We constantly are wondering if these children are happy, if we are doing the right thing for them, how we can best help them. Thank you so much for speaking to all of us. I can only imagine how difficult all this attention must be to handle, but please don’t stop talking to all of us. There is so much we want to know. There are so many little voices that need help being heard. We struggle all the time trying to help them. As someone that has cared for these children for so long I would love to know how to keep them safe and to make sure they know we love them! Take all the deep breathes and space you need, but please don’t stop talking all of us. I always had the sense that people with Autism know a part of this world that we just don’t see. Thank you! Also, please know that what ever assistance you may need in your crusade for the truth I would love to be a part of it.
Hi from Japan, Amanda =^..^= I have just been watching ‘In My Language’, which I liked very much. :) I am curious… I’ve often wondered about other creatures, and I’m interested in zoosemiotics, and the ways birds and mammals and fish think or articulate. Do you pick up patterns and attitudes from animals as well as people? Just a thought…
Hi Amanda, I was the Executive Director at a school and adult day treatment program for autistic children and adults. These people were terribly frustrated as you are and the staff treated the kids and adults with autism with love and understanding. Unfortunately, we did not understand the “language” you and they speak and that was our mistake. They didn’t have the computers that assisted with language at that time and we did alot of art, music and dance therapy to attempt to elicit communicationn. I also developed a swimming program in an indoor heated pool and I was amazed at the calming effects it had. I would love to learn more, today I am one of the few women who run an engineering company.
Hi: I’ve been visiting this site regularly for the last few weeks after stumbling across “Getting the Truth Out,” and I’ve really been affected by it. I wasn’t aware of your current media exposure (but I just now looked it up on CNN so am aware now). One thing that has struck me recently about the current TV blitz about autism is the huge number of interviews I’ve seen where some TV host/hostess is interviewing the parent of an autistic child while the child sits there, silently, and both parent and TV host ignore him or her. I find this particularly disturbing when the parent is revealing very personal information about the child. At least your current media coverage bucks that trend!
By the way, as I read the CNN story, I noted that the sponsored ad link next to the story was advertising bentonite clay baths as a “cure” for poor eye contact and social skills. Yep, it’s all purpose stuff! Put it in your cat’s litter box, but it in your kid’s bath! It’s a miracle, all right!!!
I really enjoy this site. Hang in there.
–Eleanor–
Not that it’s polite for me to give advice when I don’t know you, but I hope you don’t stop posting. Now is the time to keep it up! I found your blog through the CNN article and I’m sure many others have as well.
If the purpose of the blog is to get the word out about autism, then this is THE time to keep it updated.
Good luck!
Makes sense. I would not feel comfortable with the attention. When I got back from combat I just wanted to be alone for a while with no interaction from other people.
I have always considered a diagnosis like yours, or like that of my brother (he is also diagnosed as low functioning autistic and has even been diagnosed as mentally retarded … although I seriously question how you can test mental capabilities of a non-verbal autistic boy…) as being very truncated. While you and many people like you have managed to learn our language, I feel that those of us who are not considered to be within the autism spectrum have not been given any real education in how to communicate in ways that you would naturally prefer. I don’t think, given society’s perception of “disability” and autism that it is very likely that any sort of education program could be established any time soon, but I wonder if you recognize the disadvantage that those of us who are not looking to judge face when we wish to communicate with autistic people?
Part of my post and contacting you is admittedly for selfish reasons. As mentioned above, I have a younger brother with autism. Because of age, and the barriers between our communication (he does not speak and I do not know how to communicate with him), I feel as if I am not really able to make sure of things that I think many older siblings would like to be sure of. Perhaps hearing your take might better help me to learn how to communicate with him, and also clear up some things I worry about? In your video you mentioned that you communicate with the whole world whereas non-autistics just approach societal normalities and interact with other “normal” people… Does this mean that when in a social setting with other autistics you are all interacting with each other? Do you have relationships with other autistics that the rest of the world is unable to see or pick up on because of our language / behavioral differences? Also, how did you feel when you were living at home with family? Did you notice if they left to go away for errands? for long periods of time if they had to go to school? What ways did you show affection or love that you feel non autistics did not really understand?
I do apologize for putting you on the spot. I do understand what a difficult position it can be to “speak for others”, but I’m also sure you can imagine how hard it is to be clueless and know that you are clueless when it comes to understanding the world and lives of others. I know you have said you may be laying low, and I understand, but I do hope that you can find the time to get back to me. My stake is personal, as yours is, and perhaps you can feel a common link there that drives you to interact with this non-understanding “capable” person who’s admitting utter incapability ;o)
Amanda.
I found this (your) website weeks ago through a autism-oriented/disability web blog posted by someone else. I have spoken to friends and colleagues and recommended they watch your “In my Language” YouTube video, but even as I did so, I worried what would be the outcome to you personally if you were successful in bringing insight to neurotypical people about a part of autistic thinking and about the fact that intelligence and linguistic communication are not synonymous or equivalent. 500 years ago, native North Americans were considered “savages” (“noble” or not) because their way of life and their language and their values were so different from the Anglo-European culture and worldview that was dominating the globe. Women were considered mentally inferior (incapable of learning) simply because they had wombs and menstruated. Homosexuals were “deviants,” who carried disease and could dangerously “convert” others. All of these things resulted from assumptions that the prevalent way of experiencing/viewing/communicating with the world was the “correct” one and everything and everyone else should “fall into line” with those who dominated the landscape. Most people fear and shun what is different instinctively. Most human behavior is instinctive, though neurotypical people deny that most of their motivations and behaviors are comparable to the average housecat.
I was concerned (I’m certain like many others) about the forced intensity of interaction and intimacy you would face should you be successful, and I restrained myself from writing, because I knew based on how important and coherent you had made the video for the average person to understand, that there would be many people who would contact you, some surely challenging you. Had I made a video with some of the same themes as yours, I would not have had the lifelong perspective that you have, and it would have been simply an intellectual discourse by someone within the dominant paradigm, easily ignored by the world.
But even if it’s just one more message you have to grind through to read, I wanted to thank you for taking that immense risk, even if you didn’t at the time realize what it might have entailed. Thank you. You altered people’s perceptions of their own worlds a little, and that is a mighty thing. Most will not incoporate what they have seen into their lives, but some will. You reminded me to be thoughtful, and vigilant against my own hypocrisy.
Dear Amanda,
Thank you for putting all of this out to us webworlders via Gupta. Thanks, many times over for this activism, and insight. You’ve helped me immensely by the videos and the links on the left. Rest well, please come back online here when possible, in spite of publicity. It truly helps, at least me.
Very, very best, Helen
Greetings,
Just saw and read a bit about you on the CNN site and had to come over. I am in the office just now and can’t read all of your posts, but I can see I’ve a lot of catching up to do!
I tried NaNoWriMo last November, then I saw the NaBloPoMo info on Fussy.org about half way through that month—I’ll be doing that next year instead!
I hope things do calm down for you soon and you can get your life back to normal and blog again!
token
A certain Hater of Autistics has been a complete and utter bastard regarding you of late. We know this. We all, I’m certain, will understand your reticence at responding.
He was quizzed about his activities on his blog and was refused his proposed position at NH DDC because of it.
I’m amazed that someone who is the parent of an autistic child can stoop as low as he has of late.
And I’m sickened.
And I’m sad that this has been happenign to you, Amanda.
When I saw the article about you on CNN’s front page, I was really excited to see that your message was being given to such a wide audience, but I figured the amount of attention that comes with it would be difficult for you. Take all the time you need, and as always, thanks so much for sharing.
Teach us your language. Help us feel the world around us just the way you feel it.
And please don’t give up writing.
I have often thought that autism is probably closer to genius than to mental retardation (I hope that is not offensive to anyone). I have tested as a MENSA level genius, but I don’t feel all that smart sometimes, when I realize how much I don’t know. But I see autistic people and how they react to things and how they act, and I’ve often thought that if anyone bothered to find out, autism is probably a level of intelligence and perception that results in the mind running Too fast, and too much.
I know this sounds weird, but I have a lot of the same things that are listed as autistic, but I have a function level that lets me pretend that I don’t. I repeat words in my head and the word doesn’t mean anything, and I wonder why the word sounds so wrong. I get to points where sounds and colors are so intrusive that I want to hide in a blanket until the world stops being so loud. The feeling of my shoes on my toes can distract me to the point that I can’t focus because I keep trying to make my toes wiggle…
I’ve thought about autism.. How I think that autistic people are just so aware of their surroundings, so perceptive, that they just can’t filter or focus on all of it. I’ve hit my head on the wall before, and I’m not autistic, but I’ve done it because my head gets so busy and there is so much that I have to make it stop. I know other “Normal” people who do it. We just don’t let anyone else know we do.
We do it because there is sometimes just too much and we can’t make it stop. People whose minds aren’t so full just don’t understand. They think because it’s not something that they have that it’s abnormal.
You sing beautifully. And the flag in the wind was lovely the way the movement flows.. You have a brilliant mind, and I hope that others can see that for what it is. Thank you for learning our language and letting us in.
I have just watched the videos on CNN. I want to ask you so many things but I understand that you must be under tremendous pressure since this publicity.
Mainly, I want to understand my son, he is six. I have specific things that I don’t understand and I feel like you might have a key to helping me through what you have written. He is a wonderful child, sometimes I just wrack my brain to try to figure out what is bothering him and how to help him feel better.
Thank you for having put your thoughts on your blog, I look forward to reading and learning. I am sure I will learn a lot from what you have written.
Thank you for telling us about your world. I think your message will carry on for a while, without your needing to actively carry it. You likely know this already, but I think it’s just fine for you to back up for a while. This sort of thing would be overwhelming for anyone.
You have given us a gift of a glimpse into your world. You don’t “owe” anyone anything more, just because you reached out.
Thank you, again.
Thank you for your work and bringing Autism to light. I now understand more about Autism. Please keep up your writing and continue to show us how we can help the Autistic Community. Not all of us are ignorant and insensitive to the community. You have inspired me and I thank you for that. Keep up the good work.
Many thanks.
Sweetpea
One question: is music better than words? I’m just trying to understand if music would be a better way of “communicating” with an autistic person rather than trying to using our language.
What a shame, I just found you and enjoy reading every bit you write. My son is autistic, hes almost 5. You have opened a window to me that had its shade pulled 3/4 the way before now. I hope we can be friends.
Hey, Amanda — since this blog will probably be getting more hits as a result of all the publicity, this is probably the best time to have some monumental posts up (meaning, go figure, this is the time we need you most). Rather than overextending yourself trying to create daily brilliance, might you simply exhume some of your more popular/poignant posts and re-post them in cycles, so they’re right up there on the home page?
(I realize even doing *that* can be taxing if you’re near overload, but not nearly as taxing as having to be poignant on cue . . .)
Turn off the comboxes, take a break, but please come back soon.
When it comes to autism, you are the most articulate voice on the web. I thank you for your words and videos, and making sense in a sometimes senseless world.
Hello,
I was watching the television a couple of hours ago and saw Sanjay Gupta. (forgive me if spelled the incorrectly) He was interviewing a young person who I think was you.
If it was you or even if it wasn’t, I just wanted to say that it was an awesome interview and I have learned a lot from watching it.
Nice to meet ya!
Mommy to K.C. who is 5 years old with Autism.
I know that you may not read this because you have received soooo many damned emails, but I really wanted to say this: Thank you SO MUCH for your patience in talking to the media. All mothers of autistic children, such as I, are dying for guidance for someone with experience (being autistic, not being around those with the damned label) to give us some kind of tip on how to make our children’s lives more manageable and to bridge the gap between languages to communicate effectively.
I personally teared up (heavily) because someone finally had the balls (for lack of a better phrase) to stand up and say something on behalf of those dealing with the brain difference. I THOROUGHLY applaud you for all that it took to be “on stage” as it were. You are an beacon of hope (sorry if you didn’t want to be) for parents of autisticly labeled children everywhere. If you have ANY advice WHAT-SO-EVER for parents like us, PLEASE email me (if you see fit).
I also applaud you for doing the CNN media because I, only a year younger than you, do not have the proverbial balls like you to actually undertake such a thing.
MANY THANKS AND APPRECIATION,
Genevieve Moyer
Savannah, Georgia
You do what you need to do. We’ll be here when you get back.
Take time to relax and regroup. Thank you for your videos and words.
We are all learning.
[AMANDA: If you’re not comfortable with my recommending your past posts to other people reading this blog then, of course, please do feel free to delete this. I know you usually don’t do that, but this IS your blog.]
Since there are several parents and staff here begging Amanda for advice or insight, and since Amanda is (understandably) laying low for a while, I thought I’d take the liberty of suggesting a few resources right here at this blog site that might be helpful for parents and professionals. (Some of these link to other resources elsewhere, because of course Amanda is not the only autistic adult speaking out).
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.
(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.
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.)
For someone so quiet, you have spoken loud enough for all to hear and I thank you for opening not only your mind, but your heart.
You are a wonderful person who has given us a window into your world as well as others.
Thank you.
I cannot say thank you enough. You are in incredible person, and the eloquence with which you spread your message is inspiring. I hope that the internet will empower more people like you to inform other people who might be considered ‘different’ to prove that nobody is the same, and everyone operates on a different level, and regardless of that ALL PEOPLE ARE CREATED EQUAL. Nothing is normal.
I hope you know that while the media attention may be overwhelming, the amount of awareness you have brought to Autism will undoubtedly have a positive impact! You are proving the power the internet holds to spread a message of truth and tolerance.
Thank you.
Having learned of your story from CNN, I am curious of the possible connection of mid east religions such as hindue, boodests, and islam, explaining the constant motion and singing/chanting? Blind from birth, I use talking software and a speech synthesizor to read the computer screen to me. I also knew somebody who has CP, uses a Pathfinder as a communication device, however because of their lack of mustle coordination can only use the pictures to communicate. Writing from Pittsburgh Pennsylvania, with my black-lab guide dog Dave from Guide Dog Foundation, the guide dog school is located in Long Island New York. Have a good weekend?
I just saw the videos on CNN and was really moved by them although I’m not sure why. I especially enjoyed your discussion of the assumptions people make, even though I am sure I do the exact same thing without even realizing it. I’ll have to try and be a bit more open minded in the future.
Thanks for sharing your insights with the rest of the world.
You must be overloaded with all the attention. Spent some quality time with your cat to relax!
A certain Hater of Autistics has been a complete and utter bastard regarding you of late.
Who might that be?
Hello, Amanda.
I just saw your story on CNN. As a person with a disability (a significant visual impairment), I am quite heartened by your drive for self-advocacy and desire to educate people about autism. You demonstrate how truly intelligent/articulate/personable many with autism can be. I attended a school for the blind during my high school years and theree were several students there who were not only blind but also had autism; I came to know many of them well.
Thanks again for all of the work you do on behalf of people with autism and on behalf of the disability community as a whole.
Thank you for all of the valuable information. I have an 8 year old little granddaughter who is autistic. I want to learn everything I can. I had started to ask you if, when I talk, does she understand me. I think you kind of answered that question in one of your other e-mails.
You don’t need to worry about writing me back. I know you have so many people who have contacted you. I just want to thank you again for helping us to try to understand a little bit better.
By all means take a break until it feels right to come back. You don’t owe people answers just because they’re interested right now, and it won’t be good for anyone to have you push yourself unreasonably.
For some of the new readers attracted by the CNN segment, can I offer a polite suggestion? It doesn’t seem like a good time to ask questions that will get answers soon, so you might want to consider reading through past entries by topic, to see if that helps you find what you’re looking for. There’s so much amazing information and writing here that you can learn a lot while Amanda’s taking an needed break. It’s well worth the time.
Amanda, I left a thank-you over on your article on Anderson Cooper’s blog on cnn.com for running the publicity gauntlet and thereby bringing “In My Language” to so many more people who need to see it. Dunno if they published it; if so, forgive the repetition :-).
In *this* space, I just want to thank you for being so Amanda-ish.
Take the time you need to recoup.
— Phil
Thank you! My son, Nick, who is 20 has a lot in common with you. His method of communicating is very different than yours. He prefers to draw or write. I commend you for being able to show yourself and your world to the entire world. And good luck with your pets and the allergies! I am sure with your determination, your doc will find something that works for you!
Amanda, this is totally understandable. & the ppl new to this site, you can read a ton of stuff here that might answer yr ?s that you want to ask Amanda. At least until back to writing more regularly. Around newyears was a post “favorite post of each month.” i recommend that one to start with.
I am a Mom of a 13 year old boy who was initially diagnosed PDDNOS then as time went on we are at Aspergers. However, the nuances of the diagnosis itself are irrelevant. What I want to say is that society desperately needs to be educated – this is not about tolerance or people’s comfort levels; it is about inclusion – and learning how to wrap our arms around the special gifted children and adults who live with, struggle with, strive, thrive, love, live, with Autism in its many forms every day. I have watched other children with my son – and my impression is that they believe if they allow him to hang around the outside they have performed some favor – he knows that he is not really being included; or invited to parties, or to the Friday night movies. It is inclusion and true acceptance of people’s differences and similarities which is needed – in so many ways.
Thank you for offering your insight, your beautiful soul to us.
Enjoy your break – relax, rest, re-invigorate – come back stronger -you are being heard and you have a calling……..email when you are ready – It would be an honor.
you’re a wonderful messenger, and you’re helping people enormously–with and without autism. Every time we can all learn ways to communicate and understand each other more, we’re strengthened in so many ways. It’s amazing what a little technology can do, no? : >
I was utterly fascinated with the CNN interview with you. I think you have brought me to the conclusion of two things:
1. I think that you would be the BEST advocate to start your own Foundation for autistic study and research. Of course, you could have someone else manage it for you that you trust to take care of the details that would overload anyone….because of your strong voice and excellent thoughts.
2. After reading your blog and watching the interview, I don’t see that those with autism are really different than anyone else on some things. Autistic people (of which I know none personally) are communicative in a language all their own, but how is that really different from any other individual that communicates in their own way: In fact, it appears to me that autistic people are maybe like another respondent said, just maybe like deaf people, that use other avenues to communicate. It is just that the “neurotypical” do not understand the language and for many what is not understood is shunned. Such a shame.
I am all for Amanda’s Autistic Foundation to help support research and study in this area. How wonderful of you to open our eyes – which is also another way to communicate. Sometimes it is what is not said that makes all the difference in the world. Gees I get overloaded by people, noise and people talking endlessly….
Come back and blog only as you feel like it, but know we are thinking the best for you.
thank you, thank you, thank you, ………………………
you should have time to rest. but you have given me a much better insight into my daughter’s autistic world and i will try harder to learn her language with greater hope thanks to you. my wife and i and my daughter Tiffany can not thank you enough.
Hi Amanda. Thank you for being an advocate. My son has been diagnosed with autism. After reading your website and reading about what other people – including Temple Grandin – have said, I am truly appalled. Thank you so very much for giving us a chance to see your side of life. Take all the time you need to regroup. You are such a pleasure to listen to and I hope that one day, I will be able to go to a conference you are at. I can only imagine what the publicity has done to you, as I do know what it would do to my child. But thank you again for overcoming those obstacles in your mind, and reaching out for awareness. You are truly an angel. *hugs*
Amy
mommy to Deacon age 4 – AS
What has so gripped me so much about your thoughts and story, Amanda, is what it confirms about our potential as humans. As I understand, we use only a small portion of our brain (20%). Many of us are using the same areas which presumably allow us to transparently communicate. I often ponder about the possibilities of being able to use some of that other 80%. Amanda, do you believe that is where you are tapped into and what would help explain the communication obstacles with many of the rest of us?
As you plainly point out, this shows that autism is not a deficiency, but part of completing our fuller range of communication abilities as humans. You have the ability to communicate with words. Can I learn to expand my communication facilities in ways that are not typical for me?
Given the state of conflict and misunderstanding in our world, it seems that our current common communication modes are not serving us well. It seems that expanding the communications palatte might be helpful.
It’s a powerful and necessary opportunity (and reality) that you present, Amanda. Thank you for your insight.
Your story and CNN’s coverage has enlightened may who previously knew nothing about the autistic. Hopefully it reaches as many people as possible, especially those who can be so cruel and disrespectful with respect to those with disabilities. A friend’s daughter is autistic, and I’ve heard a-h’s say things about her in public, which I know she heard and can understand…
Amanda,
You brought me to tears. Thank you for helping me and so many others understand a little better. You have shattered the myths and stereotypes regarding those with autism. Admittedly, some myths and stereotypes were my own.
I love you for what you are doing and who you are.
God bless you and take care.
Tony
Amanda,
I saw the piece on CNN and I think you are an amazing person. I have a 16 year old son who is highly functionally autistic. He worries about things that non-autistic do not worry about. He has a lot of anxiety also. Is this typical? Do you experience the same things also? He refuses to take any medication that would reduce his anxiety. What do you think about medications? Thanks for your time.
i am sure that this attention is exhausting. although we my all think about things differntly, i hope that you are able to feel the wonderful feeling of knowing that you have helped so many people feel closer to people they love.
Hello- I am a retired High School Special Education Teacher. I am so proud of all your hard work..If ever you beed any assistance with anything, please feel free to contact me at the enclosed email address. I have a friend who has a 6 year old nephew with autism.Any communication you can offer would be greatly appreciated.
Be Safe
Kathy
You’ve changed the world. For the better. You should treat yourself to whatever you need because you’ve done more than most people will ever do.
I totally understand your want to stop posting. So I say that you should rest, play with your dog, and just relax for as long as you need. When you post up anohter message, whenever it may be, we’ll be here and have waited for it. In God’s eyes, your probably the best communicator in the world.
Amanda God loves you. You will be healed from your Autism to night.
God bless you.
Love always
Hirut.
Hello Amanda,
I am one of the millions who saw you on CNN and was totally impressed. You have done something great for all autistic people, but also for the rest of us, by opening our minds to something new and so beautiful. Your idea of making a series of videos to teach young autistic people is an excellent idea and will not only help them but also help the rest of us understand what we are missing… because of our ignorance. Thank you so much for opening my eyes. Keep up the great work.
Andy Srougi
Human Rights Activist
She doesn’t need to be healed or fixed. I can’t speak for everyone, but I would never want to give up what makes me special and unique. Thank you so much for helping the “normal” people understand some of the difficulties that I (and others) have in translating thoughts into speech.
Hi Amanda,
Thank you for reaching out on national TV and educating all of us. I was struck by the things I have in commone with you. We share a love of animals, I notice their body language too. I enjoy the feel and smell of some books and paper, I need down time and get overwhelmed if I have people in my house 24 hours a day. I’ll have to continue to read your web page, but for me the place to start is always to see how we’re alike, not how we’re different.
Oh, and I’m a Vermonter too. I almost forgot that one.
Keep up the good work,
Joan Black
First allow me to say, thank you. Entirely too often behavior of any type is misunderstood, or considered unacceptable merely because it falls outside or a “norm” or “average”. Personally, I am not “average” or “normal”. People have often considered portions of my behavior self-destructive, if not downright suicidal. I am an intelligent person (by some people’s definition), and yet I still find within myself thoughts, actions and patterns that I find natural, normal and far more fulfilling than most peoples repetitious life of eat, work, sleep (and a few unsavory things thrown in the middle that are considered acceptable). Although I am not autistic, your views have helped me see a portion of my thoughts, feelings, and actions as, at least for me, normal. I think I may find myself feeling a little more comfortable in my life because of it. I understand that this is very taxing for you and I thank you from deep inside that you have bothered to try and reach out to some of us.
Love,
AL…
Hey Amanda,
I can understand if you want to lay low and avoid certain topics or activities right now. However, I wanted to say that, frankly, I was a bit disappointed in the CNN piece that aired Wednesday night. We (my parents and I) were hoping that CNN would escape the typical condescending sideshow antics and focus on what you were saying (the important part!) in addition to how you were saying it (the “ooh, ahh, she’s so bloody amazing!” aspect, which I imagine CNN would have a hard time avoiding to push the story). Perhaps my expectations and hopes for such a story are misguided/idealistic, but I am glad that you were represented as you are (or at least, from reading your blog/other writings for a while, how I perceive you as being) instead of being an entirely hopeless case, or as being someone you are not. I saw some sense of being treated as a person, by the story and by Dr. Gupta.
Anyhow, I could psychoanalyze the thing for several hours, but let’s save that for some other time. I don’t want to get in the way of these positive, well-meaning responses.
Relax, you’ve got lots of allies. The work continues. Get some rest!
Dear Amanda,
I am 62 and this is my first visit to a BLOG, thanks to you, whom I saw tonight on CNN. My first contact with autism was through a book that I read recently called “The Curious Incident of the Dog in the Night-Time” by Mark Haddon. It is a whodunnit told by an autistic youngster of about 15 years. It is a marvellously funny, fascinating,intriguing and sometimes sad story that takes we “other-brained” people into your world . I think that you would enjoy it.
God Bless
Patricia Marshall
I saw the CNN story this morning and wanted to thank you for sharing your experiences. You have already made a difference. I hope that you will continue to speak out in the future.
Hi.
We just watched your CNN spot light. We enjoyed watching your efforts in educating the general public. Autistic children and adults do have some form of communication – it just has to be discovered. The struggle is discovering what works for each individual, and adapting communication to fit the Autistic individual. We have a child with autism. For the longest time, we couldn’t communicate with him. We were lucky to discover he could read and write. From then on, we hunted for toys or games that encouraged his abilities, and built on his learning curve. We kept out of school until he was better able to handle the changes to his environment. We suplemented with The Picture Exchange System. In school, The Picture Exchange System continued. And Talk Tech was introduced. He is now 8. We are so excited. He is emerging at vocalizing words. He still has trouble with forming the words correctly. Sometimes we have to guess the words. If all else fails, we have him write the word. And, teach him the correct sounds for the word. We thank god everyday our baby can read and write.
We wanted to Thank you for your courage. We are sure more and more people will discover the truth – being diagnosed with Autism doesn’t spell the end. It just presents challenges to overcome. And to all individuals parenting an autistic child – perserverance and understanding is key to all things. Good Luck! And May God Bless You!
Way to go Amanda. Should we teach these people the autistic secret handshake now?
I really appreciate the posts that Andrea made giving people a bunch of links. Great idea. If people knew where to look they could get answers to many of their questions by reading what you and others have written.
People. You can donate to autistics.org. through PayPal. Hopefully Amanda won’t get so much in donations that she’ll have to move to the Bahama’s and have an off-shore bank account and everything. :-) Not that Amanda is the only person at autistics.org, but she’s one of them there.
Also, make sure you visit neurodiversity.com no really. do it. you won’t be disappointed.
I wish I could tell you in your native language, thank you for more than you can possibly know.
hi amanda i hope i spelled your right i was just wondering how you can see the letters you type on the keyboard can you see them on the screen,i want to know how old are you,has your family seen your tv interview my email is adamdavenporrt@hotmail.com please emaiil me i would love to talk to you love adam
Hi Amanda,
Do you type in Word or WordPerfect? If so, I have an ebook, entitled “Computer Speed Typing Made Easy” which presents a system for typing with autocorrecting abbreviations. The system makes typing in Word and WordPerfect much easier and faster. The ebook is currently being made into a downloadable tutorial. If you would like to look over the website, http://www.ComputerSpeedTyping.com, it provides a lot of information about the system. I would be happy to send you a complimentary copy of the ebook, and the tutorial when it is ready. I will need an email address to send the ebook.
Best wishes,
Steve Crilly
scrilly@ComputerSpeedTyping.com
I can’t remember the last time someone on TV so impressed me. Don’t stress out about taking a break, or giving yourself a break. People will understand. By the way, I can’t recall anyone, either at university or in the professional word, who types as fast as you do. At first I thought you were using some kind of court-recorder’s transcription machine. But then I noticed you had a regular keyboard. Simply amazing. You’re fast, and a word-smith. Given those talents, I’d challenge you to write professionally. Tell your story, or perhaps even write a work of fiction. Our own brains hold us hostage sometimes, rendering us incapable of doing some of the things we dreamt of. I dreamt of being able to compose music as great as Mozart, and once I even miraculously composed a piece which I thought was Mozart’s equal. I could hear the melody, counter-melody, all the parts: strings, woodwinds, percussion, and I could barely write it down as fast as I was hearing it in my mind’s eye. It was remarkable, I was seeing the notes on paper as I heard them in my mind. I realized that this was genius, or at least a brief stroke of genius. Then I woke up. It was only a dream. Still, it was the most remarkable dream I ever had. At that moment I realized that if our subconscious is capable of genius, we should try to find a way to unleash it in our conscious world. It shows what the mind may be capable of, only it’s trapped in our inhibited waking consciousness. I often have a dream that I can fly. It’s amazing. I wonder when you dream if you can do anything you wish. I hope so. Your communication and words are your forte. A great gift. People often look back on their lives and wonder if they made a difference in the world, if they ever touched someone. You’ve made a mark for sure. I hope it’s just a beginning. I wish you all the best in your endeavors. You are truly a remarkable person and an inspiration. Don’t let the turkeys get you down. And remember to take time out for yourself : )
Amanda,
I have a 9 year old daughter with high functioning autism. I am glad to see the positive message being sent out by your web site and youtube video. Enjoy some time away from the media. You have done a great job.
Kevin
I’m going to miss reading this while you’re away.
All the best.
I didn’t have the chance to see your CNN program but have no doubts as to the positive influence it will have on the world. I did see your article on the CNN website. Well done!
Meanwhile I’m sure glad I’m not in your shoes. The occasional conference speech is more than enough attention for me… I bow to your greater willingness to give up your personal space for the good cause.
Regarding #82, some people will *never* get it even if you rub it in their face, eh?
– Martijn Dekker, Groningen, Netherlands
– (high functioning autistic/Asperger’s syndrome)
Your a blessing…
Amanda,
I was one of what appears to be an entire world of people who watched your incredible story on CNN last night. With a complete appreciation for your desire to stay out of the spotlight following such a public appearance, I, too, think you have just an incredible, inspirational, enlightening story. If ever there were someone who had insights to share to the world… it is you.
Totally off subject, as a native Burlington, Vermonter myself, it was nice to see a little bit of “home” during your story! My puppy watched alongside me last night and enjoyed your dog’s tail wagging!
Thanks so much for letting the world into your life and sharing such a huge part of yourself with all of us. It is clear that you have touched the masses. You have an incredible gift with words. I will be coming back to your site in hopes that when things settle down I will be able to read more postings from you…
All the best,
Michelle
To Adamdavvenport in #94:
Amanda has talked about one-fingered typing at http://ballastexistenz.autistics.org/?p=85
She has also said elsewhere in my blog that she has a strong spatial memory of where things are — she just knows where the keys are without needing to look. (But don’t trust my memory too closely on the details. If you really want to know look around this blog, try using the search feature)
You are truly a brave, intelligent and compassionate individual. Thank you so much for your insight. Although I don’t “know” you personally, I am extremely proud of you.
It’s understandable. Take it easy (I hope you can).
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.
Also, of course, see comments #56 and #92 above for more useful links.
Hopefully these should tide most people over (and answer most people’s questions) until and when Amanda is ready to come back.
Amanda, you aren’t “amazing” in the condescending way they tried to show you in CNN, but as a teacher, explaining things that are useful for us to understand autistic loved ones & even our own autie selves, you ARE amazing at that. Still feeling relieved that despite perpetuating myths in what they said around you, CNN did show video of you saying things i recognise as YOU. And that make SO much sense, as usual. Thank you for doing what some (like me) don’t have the guts to do, and many auties don’t get the chance to do. Even though they made you out to be unique in how various your autism is and what abilities and difficulties it gives you, we know that you represent a lot of people whose brains and lives look a bit -or a lot- like yours. And people who get treated like you do, for different reasons. That and a lot of other stuff that you explain here and elsewhere. And that is a great work to be doing… Whenever you feel up to that again. Hope you get a good rest/ relax. See you soon.
Amanda, I saw another segment of your story again on CNN. And I see all the responses in here since yesterday. You did it! You got our attention. Please don’t let us scare you away. This is our only way to express our appreciation and support.
And I am looking forward to be part of this blog/community and learn more about Autism and do my best to show my support to you and others.
Thank you again!
Sweetpea
Amanda ~
I just wanted to send you a quick note to tell you how you have really touched my life with your story and your courage to “be the messenger.” I just “retired” from years in a job where I supported people with cognitive “disabilites”, including Autism. Although I always believed myself to be open-minded and aware of the thinking, learning and emotions of the people I was in contact with each and every day, your video and interview with Dr. Gupta really opened my mind to my own limited understanding. I can’t recall a time when I have ever been so humbled or so touched. Thank you.
You will forever be in my thoughts and in my heart.
~ C
Thank you for teaching us, Amanda.
Be good to yourself. Remember, the media is not a good representation of what ordinary people are. You did a great job (as usual) on CNN.
-Peace,
Nichole
You must take care of you. And when you have rested, come back to the fight. We all must resist the desire to hide. peace, jenny
Amanda,
Thank you for your work and insights. As a child, I had a friend whose brother was autistic, and I was always convinced that the barrier between us was simply of communication. We did not use the same language. But by observing him from a distance, I knew that he was intelligent. I urge you to keep up your efforts to advocate for the autistic. Those of us who are not autistic need a translator to help us learn to communicate with those who are. We need to be educated on the subject, so that the world can be a friendlier, more fulfilling, and more comfortable for the autistic. I realize that the burden is heavy, but it is important. We have so much to learn from you. Thank you again for your important work.
Thank you for helping me understand my two autistic sons better. I am working on getting them both communication devices like yours.
Amanda,
Thank you so much for giving me more insight into the world of autism. Now I know what my daughter’s world is like. This helps me to become more comfortable in communicating with her. Once again, I thank you and keep up the good work.
You are our ultimate teacher. Know that you’ve opened a window to the world that will never be closed again.
Hello.
I just wanted to say hello and to introduce myself. My name is Keri and I am the proud mother to Jacob age 14 years and Matthew age 16 years and Sarah age 13 years. Jacob and Matthew both have autism. I truly appreciate that you have shared with the world what I am calling the “inside view” of autism. Thank you so much. My husband and I have said many times that we wish we could spend just 5 minutes inside my sons mind so that we could understand where he is. Now we know thanks to you!
Love
Keri
Wow. Slew of comments – I hope not more overloading!
Be well, and do whatever you need *to be well.
Hello dear Amanda,
Only want to give you my support and encourage you to keep on to communicate with us stupid. I have met an autistic girl who played with my daughter sometimes. I noticed in her play she lived up in her world. I was feeling sorry for her not to speak much but saw in the big blue eyes that there were life.
The CNN report with you touched me and I wish you all luck in your very difficult struggle in your mixed worlds.
Am sorry for the society to have so hard to understand everything not follow the standard.
Best to you / Peo
Like most people, I saw your story on CNN. I did not know much about autism before, but now I do. Thank you for telling us our story and offering us a glimpse of what it is like. You made me think about the human mind in ways that I never though possible. Thank you!
Amanda,
Thanks so much for your YouTube video I learned about via PBS Teacher Source. When I was young, about 30 years ago, I had a childhood playmate that had Autism. His mother was very involved in the process but I can’t say that I thought of him as anything but “profoundly disabled”… and there was no assistive technology that I know of at that time (at least none that he was using). Now I feel so… stupid isn’t the word… uneducated, idiotic. I thought that “Eric” was just in his world… it never NEVER occurred to me that he was right there in my world, perhaps seeing it with more clarity than anyone.
Thank you so much for your message. You have truly changed my life and my way of thinking, not just about assistive technology, but about society’s perception of “disability”.
Chris
Amanda, you have done more for people who type to communicate than the entire autistic profession. Thank you for agreeing to do the CNN piece. By the way, I really appreciated your putting up my son DJ’s poem “Prairie Dogs” on your web site a while back. Also, I I wanted to tell you that I quote you in the intro to my forthcoming book, REASONABLE PEOPLE.
I have learned much from your writings.
Best wishes,
Ralph Savarese
Thank you for everything, but for also saying this, regarding the message of your video: “It applies to people with severe cognitive or physical disabilities, autistic people, signing deaf people, the kid in school who finds she is not taken seriously as a student because she does not know a lot of English, and even the cat who gets treated like a living stuffed animal and not a creature with her own thoughts to communicate. It applies to anybody who gets written off because their communication is too unusual.”
Its about time humans realize that animals are not cabbages. They are sentient beings with complex thoughts and emotions, not unlike ours, but in their own language. They should not, nor should humans, need to fit into a “norm” to be valid and honored. It is so sad to me that in some countries animals are treated and thought of with little to no regard, because they are not like humans. In China, the equivalent words meaning “animals” is “moving things”. Thus, it is perhaps easier on their psyche to brutalize them, thoughtlessly cause them not just fear but horror… laugh as they watch them suffer as they are hung and beaten in front of their brethren, are boiled alive, skinned alive, etc… This attitude is GROTESQUE and it is because of the way animals are perceived… because they communicate differently than we do… they have their own “unusual voice”… these precious, innocent beings… Humans need to look beyond their own limited capabilites of understanding. Meanwhile, I am often reduced to tears and severe depression to know what they are capapble of because they do NOT look, nor do they seem to care. Thank you Amanda, for being a strong voice for those humans and animals who can not seem to reach the hearts and souls of most “normal” humans… because they have their own, very precious, “unusual” ways of communicating… I relate more to them than to the “normal” humans I have been created to be like.
Love, Usually Unusual
Amanda,
I just wanted to say hello, to thank you for the youtube videos and your website and to encourage you to keep up with this awesome work. Reading and watching your discussions, interpretations, ideas, interviews and rationales has been fantastic. You are opening up the eyes of so many people and it will make a difference. Thank you so much and I hope to see more of you.
-Justin
Thank you SOOOOOOOOOOOOOOO much! My grand daughter has PDD. She uses sign language to communicate.
God Bless You
hi my name is stefanie and i have autism to i know how it is to try and deal with the world that dosnt understand us .i love being on line when i was younger my parents were told i never learn how to use a computer they were wrong .i am an artist i was in doctumary about me it called nowere you are
hope to here back from you
stefanie, that’ll be this: http://www.mediarights.org/film/nowhere_you_are
right?
regarding documentary: amanda once mentioned briefly that she would enjoy making a longer-form documentary about the issues that are important to her. i would love to find a way to contribute toward providing her with the means to do so.
I am a licensed clinical social worker, but know very little about autism. On Sunday night I saw Extreme Home Makeover where I think 5 of the 6 children had Autism. One of them I believe was a voracious reader, which surprised me. Then I saw part of your video and read your answers to questions about autism on cnn.com. I did not know that people with autism can be very different from each other or very similar to each other. I did not understand that people with autism simply communicate in a different way from the majority of people, or that they can be such great communicators. I plan on looking more at your blog and other links mentioned so I can learn more. I really appreciate what you have done to educate people about Autism. Thank you for sharing with us and also for your courage.
A dear friend whose daughter is autistic and is in my class, sent me your interview. While I understand that you must rest, please don’t stop educating and enlightening the public about autism. The more I can understand, the better teacher I can be. I use a multi-sensory approach to learning and do some very “un-classroom-like” strategies to encourage learning. Basically – whatever works at the moment for that particular child is what I do – and it might not work tomorrow! But that’s okay. I am scheduled for knee replacement surgery one week from today, so while I am not at school, I will be reading your thoughts. Bless you!
I have worked with Autism in the past and have a nephew age 5. I do not like labels – in order to function at this point in time it is apparent we have them. I want to say that disabilities WE ALL HAVE THEM! everyone of us humans. Some are just more apparent than others some are emotional some are physical. I have been able to relate b/c I see similar behaivors in myself and my husband as well. If we look deep enough and are honest I feel we all can find them. Until that time in which we as a human race see others in ourselves and ourselves in others , I’m glad you are speaking out. You know we all are here just doing the best we can with what we know. What we don’t understand scares us and sometimes it appears to be cruel. I’ve done self injury since I was very small. As I see it (I don’t drink or smoke) isn’t drinking yourself to sickness self injury or smoking yourself to lung cancer? I would think so – I again think we all do these things and Good for you that you are out there even though it is uncomfortable to do so and speaking up. You know some of us “so called Normal people” ( I don’t believe there is such a thing) have a hard time speaking up ourselves. So in a lot of ways you are ABLED!!and so very gifted in your own special way and so very special. YOU GO!!! Many Blessings
Hi I’m Chrissy I’m 18 years old I’m In the last grade I’m scared
Of leaving high school and going to collage next year for Computers
I’m Autsick I can tape slow and I can talk I have a friend who’s
In a wheelchair and he’s my boyfriend he’s really funny his name
Is Stefan and he’s 19 years old and still In high school alright.
I also live In calgary I watch tv after school I ride on a school bus
I write stories all the time sometimes I’m a troublemaker I hit kids
In my class and my teachers too but I just gave up hitting okay yeah.
Amanda, you’ve done a remarkable thing. “Low-functioning” – the rest of us should be so high-functioning. Thank you for this act of bravery.
Amanda, I saw you on CNN and went to work this morning and told the teacher that I work for. I am an aide in her class. She was overwhelmed as I was, and we spread the word. We watched your videos online and we all got chills. The teacher ordered the tape from CNN and our school is going to do a one day training, watching your interview and video. You taught us a lot today. Thanks and keep up the great work. I hope you make more videos. Much love and repect to you.
FOR PARENTS AND PROFESSIONALS READING THIS BLOG
(Also, for JENA at comment #132)
HOW TO RECOGNIZE OVERLOAD
Since Amanda is (I assume) still taking some very well-deserved rest, I thought I’d post a few more links that might be of interest to PARENTS and PROFESSIONALS reading this blog, especially for newcomers:
I’ve noticed that one common question people seem to have is, how to recognize overload. Amanda has posted about this topic at:
http://ballastexistenz.autistics.org/?p=315
(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)
She also categorizes some of her blog posts to make it easier for readers to find posts on a particular subject (Look at the left hand side of this page — if necessary, scroll up or down until you find it — there is a LONG list of categories). Look for whatever categories you want. Here’s a list of her older posts on “overload”: http://ballastexistenz.autistics.org/?cat=62.
And, of course, don’t forget that Amanda is NOT THE ONLY INTELLIGENT, INSIGHTFUL, ARTICULATE AUTISTIC ADULT ON LINE. She’s not even the only intelligent, insightful, articulate non-speaking autistic adult. Or the only one who has been labled “low-functioning.” See my comment way up above at #56 (and other comments at #92 and #105) for more links that might be of interest to parents and professionals (and many to autistic people too).
Also check out the Autism Hub for links to more blogs by autistic adults at:
http://www.autism-hub.co.uk/
TO JENA, AT COMMENT #132: How great that you will be using Amanda’s videos in your school’s training! You might know by now that Amanda has made several videos. “In my language” is the one that made her famous, but some of her other videos (on being viewed as a “non person” and her interview with Laura Tisinock about “recovering” from autism, and her video commenting on the label “retardation”) are also very good and powerful. I think all of these would be enlightening for the teachers at your school. See my comment #56 above for the relevant links. Also check out http://www.gettingthetruthout.org — takes 30 to 60 minutes to read through the whole thing, and it MUST be all read in one sitting (or else you will completely miss the intended message), but it is very powerfully done. Another good resource for your teachers. Plus, of course, check out other blogs by autistic adults.
FOR PROFESSIONALS READING THIS BLOG
(Including Jena at #132, Martha Ann Spruill at #126, etc.
Including SOCIAL WORKERS, teachers, ALL MENTAL HEALTH PROFESSIONALS, everyone who works in an institution of any kind, etc.
I’ve noticed a lot of teachers, social workers, and other professionals seem to be reading this blog now.
I don’t work with anyone autistic, and I’m not even using my social work degree right now. But I do have a masters degree in social work. So part of me can relate to the professional side of the professional/client relationship even though I, myself, have disabilities (I am deaf and have attention deficit disorder).
For me, as someone who once went into training for the social work profession (and did the usual internships), I found some of Amanda’s posts listed here to be very powerful — I recommend that any professional should consider reading these EVEN IF YOU DON’T WORK WITH AUTISTIC PEOPLE. Many of the posts below raise issues broad enough to apply to ANY professional/client relationship, whether or not one of you has a disability (when you link, scroll down to see all the posts in that category; at the bottom of the page, link to “older posts” where relevant)
http://ballastexistenz.autistics.org/?cat=90
http://ballastexistenz.autistics.org/?cat=67
http://ballastexistenz.autistics.org/?cat=47
In most cases, the issues that Amanda raises about POWER IMBALANCES between staff and clients are VERY relevant for ANY professional (social worker, psychologist, psychiatrist, service provider, nurse, etc.).
Some of the posts that Amanda writes describe institutional situations (see third link above). But I think professionals should read them EVEN IF YOU NEVER PLAN TO WORK IN AN INSTITUTION. The power imbalances do tend to be more extreme in an institutional setting (because you’re more trapped there, you can’t walk away as easily). And that means that some of the consequences can be more extreme than they might be on the outside (torture, “mind-rape”/head games, etc.) BUT some the underlying power imbalances DO still exist between ALL types of professionals and their clients on the “outside.”
Please don’t dismiss the institutional stories just because they’re “too extreme” and “couldn’t happen” in your nice quiet adoption agency or cozy psychotherapist office. These stories can still help you understand (as they did with me) how power imbalances inherently harm clients EVEN WHEN PROFESSIONALS SINCERELY WANT TO HELP. That might help you recognize how power imbalances negatively affect your own relations with your own clients, EVEN THOUGH you are sincerely trying to help, and even if the consequences are not nearly so extreme in the place where you work.
Most of us don’t like to admit it, but professionals DO often inherently have more power than their clients — whether it’s someone who comes to make sure a client is fed and hydrated, or a social worker in a position to refer a client (ANY client, autistic or not) for appropriate services, or anything else. The client needs something, and YOU have the power to give it or to take it away. And if you don’t meet their needs (even if you THINK you’re meeting their needs), clients often have few avenues for appeal.
My social work training program was fairly good in that we did do some discussion about power imbalance issues and how we could work around these issues so clients could still empower themselves. But in hindsight, I think we didn’t do nearly enough. We should have read more stories from clients who have been seriously harmed by the system (or at least who feel they have been). We should have been exposed to things that made us seriously uncomfortable … that made us squirm … that made us doubt ourselves and our own motivations for “wanting to help” … that made us ask ourselves, “Could I be harming or manipulating one of my clients WITHOUT EVEN UNDERSTANDING WHAT I’M DOING? Not because I want to harm them, but because they may have been too conditioned by past negative experiences with the system to be able to let me know when they feel manipulated WHETHER OR NOT I MEANT IT?” “Could I be failing in my job BECAUSE I’m trying to “help,” but in the wrong way? Am I REALLY listening to my clients or do I just think I am because I ask questions and they feed me answers?”
If we had had more learning experiences like these, I think it would have helped all the students in my program be better social workers, and more sensitized to how the professional/client relationship looks like from the CLIENT’S side.
So please do read the posts at http://ballastexistenz.autistics.org/?cat=90
Plus, of course, see other links listed in comments #56, #92, and #105 above (including links to blogs by other autistic adults, and one link specially marked for professionals). And I just posted another few links a few minutes ago that shouldn’t be too far above this comment. These include links to still more blogs by other autistic adults.
HELLO AMANDA, THANK YOU VERY MUCH FOR OPENING PEOPLES EYES TO AUTISM. I HAVE A QUESTION FOR YOU. I HAVE A 22 YEAR OLD AUTISTIC SON. HE HAS NO SPEACH BUT I UNDERSTAND WHAT HE NEEDS MOST OF THE TIME. I DO NOT UNDERSTAND WHY HE CHOOSES TO SLAP HIS HEAD OR FACE SOMETIMES. I SAW YOU DOING IT ON CNN EXACTLY THE WAY HE DOES. I WOULD LIKE TO KNOW WHAT IS GOING ON? HE ALSO MOVES BOTH HANDS THEY WAY YOU DID (VIBRATING HANDS) IS THAT A SIGN OF BEING HAPPY? PLEASE HELP WHEN YOU GET SOME REST.
BEST WISHES
Thanks, Ma’am, for all you’ve done! This most of all.
Amanda,
I said in my Wednesday night post over at my own blog that I decided I wanted to get involved in autism advocacy largely because of my association with you on the various lists we both belong to.
I just wanted to clarify, having read so many comments calling you “an inspiration”, that I wasn’t meaning that I found you inspiring, but that your ideas and the work that you talked about on the lists were interesting and helpful for me in understanding where I wanted to align myself. It took years (I have no idea how many, really) but I’ve been solidly converted and I’m finding my place (however slowly).
You are inspiring for me because of what you are willing to risk. I think I have finally come to terms with what I may be risking as I follow this path I have chosen, and that’s been partly through common themes at unrelated church services (God has an interesting sense of humour sometimes) and partly through your own example. Taking risks doesn’t come easy to me, but I’m tired of inactivity.
Decompress. Take the time you need. “Hide” for as long as you need to. People forget how important it is to look after themselves, especially when they’re stuck on working towards something greater than themselves. I know how I felt Wednesday, and all I did was a short interview and got one sentence on the news. Only a handful of people saw it. Yours was bigger and had more impact. It took me until last night to really recover (because I had to work), and I’m still not totally there yet. It’s going to take you longer because I have a suspicion that you have fewer “spoons” than I do, and because yours was so much bigger than mine anyway. It might take me a week to recover from that; I wouldn’t be surprised if it took you longer to get right back up to full complement.
Take as much time as you need. Look after yourself. I know you don’t need me to tell you that – you know it better than I do. But just in case you need permission from a non-autistic (though I’m not NT), I’m giving it to you now.
-Janna
For Mike #135,
>> “I WOULD LIKE TO KNOW WHAT IS GOING ON? HE ALSO MOVES BOTH HANDS THEY WAY YOU DID (VIBRATING HANDS)”
See:
http://ballastexistenz.autistics.org/?cat=221
>> “I DO NOT UNDERSTAND WHY HE CHOOSES TO SLAP HIS HEAD OR FACE SOMETIMES. I SAW YOU DOING IT ON CNN EXACTLY THE WAY HE DOES.”
I think Amanda has stated in the blog she doesn’t know why that happens either. It’s nothing deliberate.
In fact after seeing S. Gupta’s piece on CNN I thought it was great that he didn’t betray so much as a flinch when that happened during the interview, and instead explained to the audience that the [I’ll say “tick” for lack of a better word] is not uncommon with auties.
>> “IS THAT A SIGN OF BEING HAPPY?”
She’s stated on the blog that she often hand-flaps when physically expressing happiness per se.
So the “VIBRATING HANDS” thing in her videos is contextually different expressively and not necessarily related. That’s not to say that you may not see that anywhere in the video(s), and depending on circumstances it’s possible it may be mixed in, and maybe not–just as an NT may mix in a few half smiles in conversation or in other instances smile broadly.
And of course one needn’t to be physically “on” all the time for happiness, or any other emotion, to be felt or expressed.
Hey, Amanda, a hearty and resounding “time out” for you! You deserve it. There’s tons of stuff here for all of us to read while you rest.
And once again, you rock the house, my friend.
Heart
Hey girl did you take off my messages.
Hello again! I see you are still taking a much needed rest.Does anyone know what threads to look under to find out about repeative behaviors? My granddaughter who uses sign will ask the same questions over and over even though you have just told her the answer. She is 10
Thanks
Shelia
Just saying hello, sending greetings.
Libby is a beautiful 13 year old girl with autism and multiple disabilities. She lives in an extremely small and remote town in Idaho and has limited contact with other autistic people, to put it mildly. I am her PSR worker, writing this for her, because we ran out of time Friday and I promised her I would do this.
Out of respect for you and your time and your sanity, we will not ask any questions or request anything of you, just say hi. And thanks.
Libby c/o Bruce
Amanda, What a gifted writer you are! I have not been able to stop reading your posts, gobbling them up and hungering for more. I cannot fully explain my excitement and delight at discovering the ways that you, with your “alternate neurological configuration” interact with the world around you. We can all be so self-absorbed and limited in our perception, failing to see how our differences can fuel a better balance of “abilities” for each of us. I feel fortunate to have discovered your writings and I admire you for your courage in “going public” with your thoughts and views. This sounds like such a hokey phrase but I sincerely thank you for sharing.
Whatever pace you elect from this point forward to sharing your observations about the world we all share, it is your choice. We are better for your voice either way, Amanda. Thank you.
Cheers,
Christian
As a longtime reader of your blog and another autistic person I just wanted to say thanks for putting yourself out there. It must have been risky for you to leave yourself open to others’ interpretations like that but I certainly hope that more people got (at least part of) the message thanks to your efforts. I can’t imagine how stressful all this must be for you and I hope you’re able to take it easy and have some time for yourself soon.
Your writings have influenced my life and self-image profoundly ever since I first discovered them some seven months ago. After a long time of feeling somehow defective your blog and essays have helped me to reevaluate my life in a different context. Thank you.
Chrissy, in #140
Amanda gets a LOT of spam at this site. And apparently she goes through ALL the comments individually to check which ones are spam (those she deletes) and which ones are comments. Every once in a while she accidentally deletes a bonafide comment, especially if it’s something short. (For that matter, every once in a while she accidentally lets a spam post get through.) So if one of your comments went missing in her last round of “shoot down the spam and let through the comments”, then it’s nothing personal, just a slip of the finger. If you’re reasonably sure that your comment went missing (i.e., you see other comments that have gone up since you wrote your comment) then you could try posting it again.
For SHELIA JONAS at #141
You might want to check out this video at:
http://ballastexistenz.autistics.org/?p=240
This is a video (20 minutes, broken into three parts) in which Amanda interviews an autistic woman named Laura Tisoncik. The video is really about something else (on why Laura thinks that there is no meaningful difference between the labels “high functioning” and “low functioning”), but if I recall correctly, Laura does occasionally repeat certain words without meaning to, and she mentions that in the video. (And I think some people with similar experiences comment in the comment area as well.)
You might also want to do a key word search at this site for the word “echolalia.” I don’t know if what your grand daughter is doing is echolalia. I’ve only started reading about autism in the past few weeks or so. But it was one possibility that came to mind (i.e, that she may be repeating the question without meaning to, because she can’t “turn off” that action loop). I don’t know enough to think of other possibilities.
You might also want to see under comments #56, 92, 105, 133, 134, and 138 to check for links to blogs by other autistic adults, or links you can follow to informational resources on autism (for instance, the page for allies) and see if someone else has further thoughts on this.
Thank you for sharing your story with so many others. My daughter has autism and hyperlexia. I have known she is extraordinary and intelligent since she was 5 months old. Most people thought that I was nuts and that she was retarded. I hope that your story will teach others that people with autism are anything but retarded and unfeeling. I can’t wait to share your Autistic Aug Comm link with my friend. Everyone thought her non-verbal ASD son was retarded too. Now that he has started using a device, some people are starting to realize that he is hyperlexic and intelligent. I hope that he will read your story and understand that he is not alone. Maybe he will find the courage to join your community as well.
Thank you again.
Pingback: Left Brain/Right Brain » Evil neurodiverse rising
Amanda, I admire your courage very much. Hopefully, your appearance on TV will move society miles down the road toward the realization that labels and Dx’s are only external the real value of each person is what is inside. I am proud to have met you, even if it was only through the TV and internet.
You are truly inspiring and brave Amanda. I watched your video “In My Language” and at the end I sat there with my mouth hanging open in amazement. I have a 15 year old autistic nephew and his language is very similiar to your language. He exhibits many of the same interactions with his enviornment as you do. I don’t think anyone in our family perceived his actions as him interacting with his enviornment and to perfectly honest no one could understand his repetitive movements, repetitive sing song speech, and why it was he does many of the things he does. Watching your video helped me to understand that he is interacting with everything in his enviornment which I never understood because my interaction with my enviornment is indeed limited to what is perceived as “normal”. I can only thank you for putting the video out there. While the attention may be daunting for you, please know that you have opened the eyes of many people and may have changed the lives of some non-verbal(yet not uncommunicative!) autistic persons.
I haven’t been through your entire website yet and I am slowly making my way through but I was wondering if you could explain how you learned to read and to type when you were treated so badly during your institutionalization, and how was it that you were able to make the connection between your thoughts and feelings and then being able to type them into the computer so that they would be translated into our language. My intention is not to pry or be invasive, but simply to understand. My family so desperately wants to understand what it is my nephew needs and what he might be feeling. If you’ve already explained this somewhere I’m sorry to ask you to explain it again. As I’ve said I’m slowly making my way through your site.
Dear Amanda, as the mother of a boy with autism I hate to overload you with another comment. I’m glad you are taking a much-needed break. I just want to send many heartfelt thanks for your video and Q&As on the CNN website. I sent the links to my family and my son’s teachers.
From your website, I found the link to the JTalk software, which I downloaded. I have been trying unsucessfully for years to get similar software from our school district for our home computer. I typed “I love you” and “big hug” for him this morning, and he got the biggest smile on his face.
It sounds like you have a nice living situation in VT. Here in Virginia I’m told that those who screen people like my son for services don’t believe in home-based services. We have huge waiting lists and rank as one of the worst states in the country for home-based supports. I suspect we’ll be moving to a more progressive state when he finishes school.
Many, many thanks! I’ve added your blog to my RSS feeds. Take care.
Thank you so much for your blogs, videos and courage to create them.
I am the parent of a 4 1/2 year old non-speaking daughter named Alexis and a 2 1/2 year old Neurotypical child Named Cadence.
Alexis likes to type, we discovered this when she was 2.
You have been a true inspiration, I hope I have not added to your feelings of being overwhelmed, you have simply put things into a whole new light for us parents while Autistic children and you are ever appreciated for your time and effort.
I was hoping that you could help me, I would like to know the name of some of the devices you use, what you recommend and where I could find similar things for my daughter.
Thank You, Amanda, for the work you have created…
You have given courage to all of us who are different from the common
people, not just autistics…
Peace&Love,
John
i was impressed with your storie. i give you all the credit. id love to hear more from you. you are an amazeing person. may god bless you. i seen you on tv. i was impressed you are truley blessed. blessings my friend. angela
There are alot of good web sites on augmentive communication, and how to teach kids and adults how to use them. Check out AACintervention.com or
closingthegap.com or setbc.org or lburkhart.com. There are many types of aug-com available, from low to high tech. Even people who can’t type can access aug-com devices through pictures on a touch window or switches. Students on IEPs in E-transitions are required to have assistive technology considered.
Hi Amanda, I’m compiling a list of resources for people with autism and their families. I’m writing from a Canadian Treatment Centre (no ABA) wondering if I can add your link to our resources page in our professional journal. Seeing that you are getting a lot of attention lately, some of it bad-I wanted to ask you first. I’m listening to you through media and internet. Thanks for putting yourself out there like this. It really is a wonderful thing to do. Your article from the communicator in the fall really resonated with me. Thanks for your time!
I sent a link to the CNN interview to a couple lists I belong to and on one (about Angelman Syndrome, which has some similarities to autism) there’s already been several positive responses.
I actually heard about it from a list on Aicardi Syndrome. (I like to research piles of different syndromes). Aicardi Syndrome they are severely delayed and have vision problems and seizures, it’s more severe than autism. But many of the same lessons are true.
Ettina
PS: For the multitude of parents who wants answers to questions, you can contact me if you wish. My experience with autism is different from Amanda Baggs but there are still some commonalities. Just click on my name to find my website (including a blog which is updated in bursts) where you can find my e-mail address.
I hear you on the introversion thing. Hope you have a good break, recharge, enjoy the silence as it were. Even revolutionaries need a holiday. I haven’t been following the media attention on you, I’ve been in some of my own stuff, but I’ll have to go take a look see. Take care you.
Hi Amanda,
I just wanted to say I loved your interview on tv, I read the whole thing on the website of CNN… Just awesome! I’m the mother of Maleia Darling who has autism and I was just inspired to see your interview as Maleia was recently interviewed by the Times Argus last month and it was just great to see you and Maleia getting the word out there. I was hoping we could email each other about an event happening at the end of April and maybe you could come and speak/type a short time at this event? Please contact my email directly thank you!!!
[there was a formatting error in previous comment. please print this one.]
if you want to help out Amanda and Autistics.org’s awareness and advocacy efforts
Autistics.org has an online store. We have put a variety of attractive and thought-provoking designs for sale there, with more to come soon.
You could also just donate money at Autistics.org (by paypal), which is actually better, because they get more funds that way.
But if you also want a T-shirt (or button, bumpersticker, dog-vest, etc.) to make people stop and think, you can get that at the store, and all profits recieved by us from this store (I think we have the “mark-up” set at a dollar or so per item) will go directly to keeping Autistics.org running.
http://www.cafepress.com/autieliberation
By the way, what does Autistics.org do? Right now the website has a lot of educational, political and practical information for (and for understanding) autistics, much of which is found in the library.
There is also a forum, which is just recently getting going.
Also they have many plans for other projects to help autistics, and as you can read an example of in parts of this post, the members do advocacy on their own or in cooperation with others. I think there are also plans to further organize their efforts for helping autistics in desperate situations.
Amanda & co., please excuse if I have left out anything important. (I don’t know all the details; I’m new to the group and am mainly just helping out with the store).
I will add a PS to this comment if I find out something important that was missed.
I now understand what you mean by all the grueling media attention.
The British weekly science magazine New Scientist has mentioned you and printed images from your video in their Feb 17-23, 2007 issue.
Link to article on the New Scientist website:
When sociable computing meets autism
(May require a magazine subscription to access)