I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.
It’s not where the desire to change a child comes from, that makes it good or bad. Not on its own. It’s, even more, what you desire to change.
Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.
When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.
When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It’s easier to say “Well of course you want to change people, all people change,” than to look at what we’re actually saying.
When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.
When people say “But all people change,” they’re acting like we’re only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”
No, I’m not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that’s for certain.
It’s only recently, though, that I’ve been able to figure out that it’s not entirely deliberate that so many non-autistic people can’t imagine us saying “We don’t want to change” without meaning “We want to stagnate.” The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages “in the wrong order”. I was later poked and prodded for similar reasons. If they were such truly universal developmental stages, we’d all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they’re based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.
Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don’t have, or don’t have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn’t build the language, a lot of that last kind don’t have words as far as I know. But I’m sure many autistic people know exactly what I mean.
And since non-autistic people generally don’t know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc. While that’s a widespread practice among adult autistics, the training for this, if not careful, or even the setting, can impede the kind of learning that’s necessary in more than one way. But as people we know. A wide variety because all autistic people aren’t the same.
I learned more about myself and how to deal with the world in a few months from an autistic mentor, than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth.
A word of warning about what I mean: the word “mentor” is overused and has been turned into something way more common than it is. It has even been misused in some places as another word for staff. I view any program, no matter who creates it, that claims to produce “mentors” for young autistic people or any other kind of people, as inherently suspect. (I won’t even get into the details of the guy who told me “My mentor’s mentor’s mentor was Aleister Crowley,” suffice to say I don’t mean that either.)
This kind of relationship, I think, cannot be planned or forced. I certainly consider myself lucky to have one such relationship in a lifetime. But she and I clicked and that can’t be forced or mandated. Autistic people who are not compatible in certain ways with each other being forced into that role can be horrid. I’ve been in too many situations where someone was being forced on me or someone incompatible who didn’t know it was trying to force themselves on me in that way, and even with the best of intentions that’s bad. The opportunity for things like that to develop naturally is important, and the opportunity is there more if we’re exposed to a lot of autistic adults.
And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just “here’s the story of my life according to the DSM-IV” kind of things), because then our ways of growing won’t seem as disturbing or mysterious to many of them, and maybe they’ll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. ;-)
There is not a lot of formula in this or anything else that I have said is a good idea. That’s for a reason. What is good for autistic people doesn’t follow a strict formula that can readily be explained. That last sentence can be, and often is, taken to mean “anything goes,” but that is not true either. A lot of things are bad for autistic people, and a lot of things are just not particularly good for autistic people. But what is good for us doesn’t fit a formula, and isn’t just an eclectic tailored hodge-podge of “therapies” either (there is nothing medical about learning and growing, just because we’re autistic doesn’t change that).
It’s hard, and elusive, to describe what it is, though. Many of the skills we need and regularly use to survive in the world have few English equivalents. The shape of how we do and don’t grow is not diagrammed out as it is for non-autistic children.
The majority of books on autism, even by experts, provide bizarre and improbable explanations of surface behaviors, and perhaps how to change them, and nothing more, often missing the most important elements of our lives altogether.
Even many books by autistic people involve us explaining ourselves in their terms. Some of the reason for this is that the official terms provide some of the only language we can find to describe ourselves, it can be hard to generate entirely new words for entirely new concepts on our own, or to filter out what other people do and don’t want to hear about, so many of us use the official versions even if we instincitvely know there’s something wrong with them. It’s rare that you find an autistic person who can describe these things without referring back to dubious concepts, and I certainly don’t find myself up to the task most of the time. This isn’t because we’re mysterious, it’s because we’re dealing with a language that has few reference points for our experiences. Even the aptly named paper You Don’t Have Words to Describe What I Experience shoves and force-fits our experiences into non-autistic boxes while trying not to.
Which, I suppose, is one of the reasons that the presence of autistic adults is invaluable, provided they’re not adults who regurgitate wholesale those force-fitted views of how we work or should work, provided they’re respected as people and not zoo exhibits or constant resources. People who understand how we do grow and can tell the difference between “cat-growth” and “dog-growth” and “something going wrong” really are important.
As an example, a quote from a Usenet post by an autistic adult:
When I first read this I could tell, without going back to check which child was whose, that your son was under six years old. I don’t want to denigrate the value of early intervention, which can give autistic children a valuable head start in learning to function in the world– provided, as always, that the intervention works with rather than against the child’s natural processes. But even with no intervention at all (as long as you didn’t put him into a sterile, mind-starving institution that wold cause environmental retardation in any child), he won’t spend the rest of his life doing that. Your comment is similar to a Martian parent who had accidentally been brought a human child (by a stork with confused navigation skills), and who, without learning about the normal course of development for humans, said, “I hope that someday my child will be cured of being human. I don’t want him to spend the rest of his life crawling around on the floor and eliminating in his clothes.” Your son will develop other interests as he gets older–maybe interests that will be more comprehensible to you and maybe interests that you’ll find equally bizarre, but other interests in any case.
That’s from this post by Jim Sinclair, years ago. Xe could tell what many non-autistic people are not familiar with, which is the typical ways in which autistic people develop over time. Xe understands “cat growth” (or “Earthling growth”, in that analogy) while everyone else is expecting “dog growth” or “Martian growth”. I find this all the time in conversation with non-autistic parents, who mean well but honestly believe that for instance no speech at the age of three means their child will never talk, when many autistic people learn speech between the ages of four and seven or even later.
It’s hard to explain these things, though, when we can so often perceive them, but other people are so often seemingly unable to perceive them at all. I suspect, in the end, it’s a lot like trying to explain non-autistic social nuances to autistic people.
Ballastexistenz 
May 24, 2006 at 9:37 am (Edit)
Wow. I have only read two pieces: your letter to Katie which passionately and personally addresses the danger and tragedy of low-expectation, and this piece above explaining your banner image and site name. Again, very powerful. I believe it is only through the telling of our stories that enlighten change will happen, in our lives and in the lives of others. I say in my talks that “the greatest wisdom is shared wisdom”. Thank for sharing yours.
I see so much to read here, and many names of friends. I am going to add your blogspot to my links page.
When you get a chance, check out my page. On it you will find writings, commentary, even a catalog of cool t-shirts meant to enlighten and build more inclusive communities. Would love to know what you think.
In Peace, Understanding and Change,
Dan
June 27, 2006 at 9:28 pm (Edit)
Thank you for your blog. I think I have argued with you on another blog and now I’m sorry. Please accept my apology.
June 27, 2006 at 9:39 pm (Edit)
If you argued with me because we had a genuine difference of opinion, there’s nothing to be sorry about.
June 28, 2006 at 1:57 am (Edit)
Hello there, and thank you for this description of your logo. I’m totally blind, so can’t see it in the first place, but I wandered over here via Google, to check your blog out, after the segment about GRASP on NPR’s All Things Considered. Though I have a mood/sleep disorder, and am not diagnosed with AS, a good friend of mine (who has a PH.D. in psychology), is quite convinced that I’m eccentric at the least, and I agree with her that I often don’t have much of a social clue. So, if I end up somewhere in the AS category eventually, it might be a good fit, since I don’t tend to fit much of anywhere else, :). I can certainly relate to social isolation, being more interested in communicating over the net as opposed to in person (especially when it comes to groups), well, and other stuff in the story to which I can relate.
So, anyway, thanks for sharing about your experiences, and I’m going to go and ramble around your blog!
June 28, 2006 at 3:16 am (Edit)
Oh crud, too bad there isn’t an edit feature, or at least if there is, I haven’t found it yet, for after a comment has been submitted. Somewhere up there, I meant to say that my friend whom I mentioned is also blind, and until I was at college in my early 20′s, when I started meeting a bunch of other blind people at conferences and things, I figured that some of my social oddity was specifically due to blindness, but then I realized that there’s quite a bit more to it than just that. Well, anyway, I figured I should clarify, since some people tend to have attitudes about an us vs. them kinds of things when it comes to “professionals.” She’s certainly more socially aware than I’ll probably ever be, but the thing I especially like about her is that she is a very direct and nonjudgmental person, and though we are both kind to one another, and try not to step on one another’s feelings, subtlety isn’t a particular strength for either one of us.
I really like and appreciate a lot of what I’ve read on here so far. Particularly the ideas about how in one instance one’s placed on a pedistal, yet in a different instance it’s “you’re amazing for this or that (ordinary thing),” or if something is perceived to be difficult for typical people, then it is presumed to be doubly difficult for someone with a disability or difference. But, then there’s the backlash, even among people of given disability groups, about why something that one person can do well, and someone else can’t, that the person who might need alternative types of support is looked down upon, even within that group/community. Over the years, I’ve certainly realized this about various groupings of blind people, anyway.
I’m with you, I wish that society could change a bit faster, and get a clue about individual abilities and differences.
Tina E
August 7, 2006 at 5:23 pm (Edit)
I needed that explanation of the site name and the logo, thanks. I was very affected by your GetTheTruthOut site, affected in a positive way for sure. I have a little boy, age 3, diagnosed with ASD or whatever, (mild?!), and I want to be as good a Dad as I can be. There is so much information out there, (books, interenet, concerned friends, professionals, quackery, etc.), but your one site seems to have the greatest significance to me. I’ll be floating around here reading this (new to me) perspective. Thanks!
James
August 21, 2006 at 4:45 am (Edit)
HI. I am currently studying a foundation degree in learning support, and at the moment i am attemting to write an assignment for the module “Disability Awareness”. i am trying to answer the question “to what extent is there evidence that the medical model of disability is disabling……..bla bla bla. Amongst the handouts we were given was your one “getting the truth out”, it is this that has led me to your website. This has all beem a real eye opener for me. yes i suppose deep down somewhere i knew things were not right with the world as far as disabled people go, i dont know, maybe i did not really think about it because i dont think in the same way as these other people do. people are people regardless of their colour or disability. No-one is perfect and i have my own flaws which i suppose prevent me from doing things i would like to. i did not realise that it was as bad as it was and obviously still is!!! i have found this subject so amazing in different ways that i think i may choose to study it further for my project this year. I have looked for an email to contact you but can not find one. i wish the world was different, i wish suffering for lots of people and animals could stop, i dont suppose it ever will because there are always going to be those brutes whatever you call them, people in society that are prejudice towards others, not just desabled people. any how i have read bits from your site and i would like to read more. please contact me if you are able to do that. i am amazed by what i read. it is difficult to read some of the things because i cant quite believe that people are capeable of the things that they do. i am about to add some views from your getting the truth out to my assignment, and then im going to look at legislation over the years(for what good it has done) and those people who have tried to make things better. thankyou for your website and all those who contribute to it, and i am sorry for all those people in society that were lucky enough to be given sight but can not see what they are doing. they also have imapiments as they were born without empathy. how can you get by without that!!!!!
September 1, 2006 at 5:37 am (Edit)
http://www.moorpark-centre.com/home.htm
Hi from the UK. There is a company which is opening up lots of these ‘ground breaking’ autism centres in the UK. I’d be interested to hear your view after you check out the website above.
September 12, 2006 at 10:30 pm (Edit)
Sept.12,06
Dear Amanda,
Hi.Sorry to be “off topic” but where do I “register”,”create an account”,or whatever–as a person who (I don’t think)has an account? I went to the “Login”,but that seems to be for people who are already members. Anyway,I got an “invalid password” message when I tried to use the password I use at other sites. I’m afriad I’m really stupid sometimes when it comes to computer stuff. I also couldn’t find an “email me here link” anywhere. There could be one and I’ve just missed it, as I’m not feeling good at the moment and I do miss a lot of details sometimes. (I also grew up before the “computer boom”, and am probably 20 years older than you are (now it’s out!) Thanking you in anticipation
January 29, 2007 at 4:18 pm (Edit)
Amanda,
“…provided you are not someone I’ve made explicit my total lack of desire for contact with”
I’m not sure if I am one of those people. You were my best friend in Jr. High – first year of HS. I tried contacting you once after you had been institutionalized (the kind of place with locks, thorzine, etc – not the kind we shared together) but was told not to and also told certain things about my friendship with you that were not true. I don’t think anything would have been wrong with them if they were true, but they were simply lies. I think I may have visited you in some place but I’m not sure. A lot of my memories from my entire life are foggy so I don’t know.
I have spent many hours over the last 2 days reading your site – in fact I think I have read most of it. I even made a post, which was rather stupid as it points out a major flaw of mine – my avoidance of thinking about anything complicated. However, I think this strategy, combined with my religion (orthodox judaism), is what keeps me sane.
It hurts me to the core to think of all the suffering that you describe, and knowing that I was not actively your friend through it. On the other hand, I did try and was kept away (I don’t even remember by whom). To be perfectly honest though, I don’t wholly regret the distance. I find, even through your site, that you provoke complex thought in me and also “craziness” to a large extent. I’ve never heard of autism as being contagious, but I think that for suceptable people it might be. I understand that you are proud of your autism – or rather, proud of who you are, your autism being part of that. So I am telling myself as I write this that this all might come out as insulting. It is only that I prefer to live a life of borderline normalcy. (this reminds me for some reason of your post about your staff who kept saying: “for me! for me!”) I find that otherwise: I get horrible headaches, feel an inability to cope, depression, anxiety, catotonic states, etc.
Hmm.. I’m getting lost on all this again.
Basically, I wanted to apologize for not being around when you may have wanted me to be.
Oh, also, my mom is on the board of education in Santa Clara county now and they are currently discussing segregation in schools (more like a special school for smart kids) and I sent her one of your articles on segregation. She asked me for permission to contact you but I thought Id ask you for the permission. The plus is that you might be able to make a difference through your communications with her. The minus is that you’d have to communicate with my mother who is definitely someone who takes up too much space, etc. So, if you want to correspond with her on the issue of segregation let me know via my email address.
If you want to correspond with me about anything, let me know via my email address.
And if you think it would be helpful to your efforts in disabusing people of assumptions, I could possibly try to write some sort of recollection of what my impressions of you were when we were friends. I’m not positive I could do this but if you want I could try.
I think I’m just typing things to avoid submitting this.
Oh, I don’t care so much if you post this or not, I just couldn’t find an email address.
February 3, 2007 at 4:21 pm (Edit)
i am trying to get the term “neuro-racism” into the collective mind by using it as much as i can. It is what we autistics face as our social community tries to blockade us from appearing in their world… their comfort zones are offended by us. Some of us may be able to blend in better than others (i cite myself), but it takes so much effort that the requirement itself makes me feel “hollow and empty,” like the german eugenics term you cited above, by the end of the day (or worse, the end of a work week). Then, my ability to blend in is noticeably exhausted and sometimes non-existent. That is when the racism, the eugenics racism, takes hold of those around me. When they are confused as to why i seemed normal just a little while ago and why i am “acting” so “badly” now…
Neuroracism. Try it out. Racism is the closest term to the way i feel i have been treated my whole life. We don’t have a cultural heritage or nation of origin to cite when we try to defend our rights to be who and what we are. But it is genetic and they wish it to just “go away” so they do not have to tolerate or see it. It IS racism.
Thank you for the writing you do here. Thank you for the video you did. A friend with AS (my personal diagnosis, but still autism) pointed you out to me.
February 12, 2007 at 8:57 pm (Edit)
You are a very passionate writer and I agree with what you say about the drogitory names given people who think differently from the norm. My fear is some what personal. I think I am like you to a degree. I am able to speak but not with out stammering and stuttering because the words don’t want to come. I am sure there are lots of people who believe I am mentally challanged or at least that I have a speach problem. My fear is that someday soon I will be unable to function again once the one I am with now leaves or something happens to leave me alone. Because I can speak evryone thinks I can care for myself, but I can’t. This will probably leave me homeless someday being called names because my brain doesn’t work the same as others to the point where I don’t know where to go for the help I need. Its wrong to be thought of as less than human because something is wrong. If my arm was missing no one would call me names, but when the brain doesn’t work the names just come pouring in. I almost erased this a few times because i know it isn’t really saying what I wanted to say but I tried. At least i tried.
February 21, 2007 at 9:56 pm (Edit)
Hello,
I noticed the article in the newspaper and it caught my attention. I don’t know if this information would be at all helpful or relevant- but this person is located in vermont, and has done a lot of work, somewhat termed ” reversing autism” http://www.healthcallsus.net/autism.htm the woman is an herbal practitioner with an amazing background in bio-chem etc… located near st johnsbury- which is why I made a connection…
“Understanding the autistic child’s unique metabolic challenges opens a treatment window to lead the child back into a normal life. Because multiple factors create the problem – a multi-faceted response works best.”
I don’t know what the protocols are for posting information, but I couldn’t find a contact email. Apologies for any offenses.
Teri
February 22, 2007 at 6:45 am (Edit)
Greetings,
It’s five in the morning here in North Carolina. I set up all night reading your blog. You have such a powerful story I couldn’t stop reading it. I was curious about your relationship with Religion or Spiritually, and I read through a few sections on your feelings to that. It’s some of the most moving material I have ever read. And though you’ve exprienced hardships in life, and feel blessed for having hear of you and your work. We have choices in life that we can make, and I’m sure that with the power you project with your writing you have the chance to make some real changes for all peoples living with disablities in this country.
I too have a disablity, and understand the stigma, along with what happens when we suddenly are labeled. That creating a vaccum in which we become “no person”. That is something many people with any sort of mental illness will face, as they slowly get sucked into the systems gears. And, by the time they wake up to the fact, that no one is going to listen to them, or take anything they say with respect it’s too late. Being a non person, becomes a curse, and I have seen so many turn into zombies.. the walking dead.
I am so gateful to feel the power of your spiritual voice shouting for people to wake up!
As I said, I read your blog on your feelings of Spiritual issues, and I would like to communicate with you about some of that.
I understand how people teamed “diferent” can be used by different groups in negative ways I have some abilites, and really would like to discuss my personal journey with a person of your background. When I was a child, “Seeing” was a gift to me, but as time went on telling others what I saw lead to deep misunderstandings with people around me. Yet, I never gave up, and instead I turned my seeing into art and became a Surrealist Painter, and a Visionary. There’s a lot of things I would like to discuss with you about abstraction, intention, and how our bodies engage the world at large.
Finally, you mentioned being with the Quakers, and how silence is used, and also how your spiritual teachers related to that path, where just regular people, offering the right words at the right time.. I just want to say that your sharing and openness, shook me to the core of my being, and that you too, are a REAL spiritual teacher too, by being just who you are. Thank you so very much for giving us all such a wonderful gift, and allowing us to walk along with you for this short time.
Anthony Wetherington
February 22, 2007 at 5:22 pm (Edit)
I suffer from insomnia. I was channel surfing on TV at 2am this morning. Shamefully to admit that I can’t recall seeing your segment on which channel and which news show. It might have been CNN but your segment caught my attention. I simply want to say “thank you” and happy that I couldn’t sleep this morning. My co-worker has a grandson who has just recently been diagnosed as autistic. I showed her your videos in You Tube. She can’t wait to share your work with her family.
Take Care!!!
February 23, 2007 at 2:55 am (Edit)
Keep up the great work!! You might be overwhelmed by all the media attention but think about HOW YOU ARE HELPING SOO MANY PEOPLE!! What a GIFT you have, not a disability!! Please don’t get overloaded…but stay strong,focused, and don’t give up!!
Nicole Faggioni
February 23, 2007 at 4:49 am (Edit)
Amanda, Thankyou so much for sharing. My foster son is 15 and I consider him over functioning not low functioning. He is extreamly smart but can’t talk. He can read and write for things he wants or needs. I am really intrested if you experienced aggressions in your teens. He is getting better with this and I know as he matures and his hormones settle he will calm down just as all teenagers do. I have been through this with my other daughter who was very simalar and has autisum and she is a very happy woman now with a full life and no long has aggresions and is not on any medication. Do you have any hellpful hints regarding aggressions and the teenage years??
Again Thank you so much for sharing with the world!!
February 23, 2007 at 10:36 am (Edit)
Amanda, I watched your story last night on CNN with Anderson Cooper and am in awe with you. I think you are an amazing individual and not at all “disabled.” You have shown the world that you are strong, smart and actually kinda funny. I suspect I have a cousin who is autistic but his parents haven’t quite figured it out yet. Watching your story only confims those suspicions. Keep doing what you do and know you are truly an inspiration to all. I will definitely be keeping up with you and your story. God Bless
February 23, 2007 at 3:42 pm (Edit)
Nicole and Rhonda:
There is no contradiction in acknowledging Amanda as being BOTH disabled AND gifted.
I am deaf, I have attention deficit disorder, AND I ALSO have been labeled “gifted” by others. I see no purpose whatsoever in denying one label in favor of another. I happen to be BOTH disabled AND (so some say) gifted. Why pretend I’m not disabled? How does that pretense make me any more intelligent or articulate or capable? How does it help Amanda, or people with disabilities in general, to artifically polarize the concepts of “disability” and “giftedness”? Why assume that something about the label “disabled” somehow makes it impossible to simultaneously wear the label “gifted” — or vice versa?
I can’t speak for Amanda, but speaking for myself it always disturbs me PROFOUNDLY when I see others say, “Oh, you’re not disabled, you’re GIFTED” … because this kind of statement comes across as if you see something “wrong” or “sick” or “diseased” or “tragic” or “pitiable” in being “disabled.” Otherwise, why would you be so anxious to “reassure” someone that you don’t see them as being “disabled”? But being disabled is NONE of these things. THERE IS NOTHING INHERENTLY BAD ABOUT BEING DISABLED.
For me, if someone claims that I’m “not disabled” it doesn’t make me feel flattered at all. It makes me feel as if they are trying to erase something that is a key and valued part of who I am. No, it’s not the only important part of me. I am a great many things, and Deaf and disabled are only two of them. But to deny these aspects of me altogether is to deny part of my identity.
If this still doesn’t make sense, think of it this way: Suppose someone said, “You’re not actually African American, you’re GIFTED.” Or, “You’re so smart I forget that you’re a woman!” Or, substitute the word “disabled” with the label for any other minority group you choose. Doesn’t sound so complimentary now anymore, does it?
February 23, 2007 at 6:08 pm (Edit)
As you say handicaps as burdens, well what about yourself? please tell me, who is paying things for you?, I know for almost a fact you need money to play second life as seen on cnn you playing the game. Do you have a job? If not who is paying for your water and electricity…That’s what i thought…Other people’s money to help you live, making you a burden as well. Not to mention autism people tend to try to get attention…Sorry to break your heart, but this i can’t stand…
February 24, 2007 at 1:03 am (Edit)
Amanda,
I was so moved by what I saw on CNN. I have a 9 year old son with autism. He is a very smart boy. He stims a lot at times, verbally
as well as hand movements. He is currently in a self-contained classroom and receives Applied Behavior Therapy. I am interested in getting him into a regular classroom for small amounts of time. I
have been told that his behavior (verbal outbursts) would have to be brought under control before this could be done, as it would be too distracting to the other students and disruptive. My argument is that my son has been in school for 6 years and it is past time for him to be “mainstreamed” at least somewhat so that he can learn from the other children what is appropriate behavior inside a regular classroom. Were you ever held back and if so, how did you get the opportunity you deserved for a fair education. Also, do you have verbal outbursts at all? Do you think that stimming behavior can be brought under control to the point that an autistic persons learns not to do that at all? If so, how can I teach my son not to do those noises? I don’t want to put stress on him, if he needs to do this for some unkown reason to me.
I wish I could have watched the entire CNN segment on your story. I missed a lot of it.
February 24, 2007 at 11:59 am (Edit)
FOR LAVONNE (#17) and FOR HANNA (#21)
FOR ALL PEOPLE NEW TO THIS BLOG
Amanda has indicated that she is taking a break and will not be responding to anything for a while. But there is a wealth of information already here at this blog — just explore the archives here. You’ll note that you can explore them in two ways: you can go by date (this blog goes back to the middle of 2005), or you can go by category (though I should warn you that some of her posts are not categorized, so you may miss some good stuff if you restrict yourself to that avenue of exploration).
Also, go to http://ballastexistenz.autistics.org/?p=317 and scroll down to see comments #56, #92, #105, #133, #134, and #138 — all of these comments have a bunch of links that might be of interest to you, and might answer some of your questions. Do especially be sure to explore the links to blogs by other autistic adults. Amanda is not the only intelligent, articulate, insightful autistic adult writing on line (or in print), so there is a lot you can learn from others too.
Hope this helps.
February 24, 2007 at 4:08 pm (Edit)
Amanda,
I realize that you may not be responding, but I am interested if you are familiar with Wittgenstein’s “Private Language” argument, which denies that there logically is no such thing as a Private Language. If you are familiar, do you consider your “language” a language in the way that he means? Is it a private language, under his terms? I realize that this might seem like the most abstract of points, of little interest to those with more pressing realities, but I think the foundations for arguments in favor of your claims to rights, recognition and standing, rest in the questioning the ways that philosophers have defined both language and personhood in the past. Instutions and sciences are governed by the kinds of arguments one can make.
Forgive me for using this forum for this question, but I could not find an email link. I wish you the best,
Kevin
March 10, 2007 at 5:56 pm (Edit)
can anyone reading this suggest how i could make links with people living with autism who use paint, clay or other art materials for relaxation, communication, interaction or for any other purpose? i would be very interested to exchange thoughts and ideas with people about this.
raksi
March 30, 2007 at 11:09 pm (Edit)
hi, im shannon barnes i wnted to share wth you a poem that i wrote about me, i do invite oyu to email me id love to hear from you
sb110882@yahoo.com
your very lucky ou got great services to hep you mine suck im in georgia im g hoping in 2 and a half years , working with a differnt group called disAbilitylink, they are going to help me move to some place better and quieter. i have cobb csb for my service now, they suck the might as well not exist georgia just doent have anything really good for people who need supportsmy goal i to move to vermont, pennsyvania, or massachssetts in a small town i like rural countyland not big cities
again i love al yor work you do foradvocating and letting te world know, its okay, its cool :-)
anyway email and let me know what you think of my poem
here it is
this is a little poem of sorts of what autism is…show how it might be different or strange or , whatever…but at the end showing that its not bad , its okay, its cool and I am me ;-)
WHAT AUTISM IS
By: Shannon Barnes
Autsim is the reason i do not process or use information the same as others do.
Autism is the reason my sensory systems are very sensitive and cross-wired…..this being, my hearing, touch, vision, taste, and smell.
Autism is the rason why i have trouble relating to people, making friends, ect.
Autism is why i have trouble communicating smooth and easy without the aide of a computer.
Autism is why i can say words, but not always communicate
Autism is what makes me able to fling myself on the floor kicking and screaming, having a class A tantrum even when i am 36 years old.
Autism is why taking in simple daily life things can cause me to stress out and overload.
Autism is how i am so good at and enjoy doing repetitive tasks and behaviors.
Autism is what makes me stimulate, relax, focus, and pleasure from rocking, flapping, making vocal sounds, rubbing, bouncing, and repeating or listening to things over and over.
Autism is why i am really good at certain things but not others.
Autism is what makes me like a young child with child interests, manners, and expressions. but at the same time i possess great knowledge, special gifts, skills and wisdom.
Autism is the reason i have special gifts that most normals dont have.
Autism is why i can’t make eye contact, or remember who people are, or even control my own facial expressions and movements.
Autism is why i still need a constant security object…always an unusual object that i am attached to and need with me at all times.
Autism is why i naturally put my fingers and other objects in my mouth for various reasons from sensory input to comfort needs.
Autism is why i explore the world and things around me in unique ways compared to most people.
Autism is why i take in feelings of others, and how i express my feelings and emotions different then the normals do.
Autism is what causes me to scream and cry when i have had ”’too much””
Autism is why i find most physical contact overwhelming and some even painful….but a very light, gentle touch or rub, i find extreme pleasure and calmness in.
Autism is the reason the things i like to do, eat, see, how i talk and act….all might seem different or even weird to you.
Autism is many things, it is very complex
Autism makes me stand out to some, autism makes me different from the rest.
Autism is not normal ? but it is to me , and whos to say what is and isnt normal.
Autism is me, it is special and unique
Autism is awsome.
I am unique and awsome.
April 21, 2007 at 9:47 am (Edit)
[…] She said on the program what I have always believed since I was young: it’s a two way street. (I believe I found the direct link to her blog, if I’m wrong, feel free to drop a note: Amanda’s Blog) […]
April 23, 2007 at 2:08 pm (Edit)
I just want to tell you how absolutely amazing you are. I haven’t read everything you’ve written, but I plan to. I also love your videos on YouTube, they’re so beautiful and expressive. As an artist, I appreciate your point of view. Thank you so much.
Angela
June 8, 2007 at 11:09 am (Edit)
Dear Amanda,
Thank you very much for your blog. I’ve stumbeled upon it after seeing your video ‘In my language’ on youtube. That video really made me think… and that’s important. I’m a teacher and plan to spend more time trying to understand my students behaviors… or what people might see as behavioral problems.
Hope you have a good day today!
Greetings from China,
Marianne
June 12, 2007 at 11:41 am (Edit)
You are an amazing person. Do you play Secondlife? email me please.
d
June 27, 2007 at 3:10 pm (Edit)
Hi Amanda,
I really enjoy your site – thanks for sharing your thoughts with the world.
I couldn’t find a “contact me” link, so I’ll just post a comment here and guess you’ll read it whenever you get to it.
I’m on the Society for Disability Studies email list, where someone just posted these resource links about how to hire staff (personal assistants, direct support professionals, whatever you call them). Thought I’d pass them on to you.
“How to Find, Choose, and Keep Great Direct Support Professionals
The Illinois Direct Support Professional Workforce Initiative has created two versions (family and individual) of a toolkit to provide tips and strategies to help people to find, choose and keep high quality Direct Support Professionals. Both are downloadable PDF files.”
How to Find, Choose, and Keep Great Direct Support Professionals: Toolkit for People with Disabilities
http://www.ildspinitiative.com/docs/ToolkitforPeoplewithDisabilites.pdf
How to Find, Choose, and Keep Great Direct Support Professionals: Toolkit for Families
http://www.ildspinitiative.com/docs/ToolkitforFamilies.pdf
The content is well structured in step-by-step chunks, and the layout is clear, simple, and visual — this provides great accessibility for many people.
I hope someone makes these documents available in accesibly marked-up HTML or text-only format so that people who use braille or speech output on their computers or portable devices can also access them.
June 27, 2007 at 3:26 pm (Edit)
Thanks. There’s also a book by June Price called Avoiding Attendants from Hell that’s pretty good, if biased towards purely physically disabled people. I’ll probably use those guides if I ever go self-managed. (Right now my services are still managed by an agency, so they do a lot of this stuff without me.)
July 10, 2007 at 9:03 pm (Edit)
Hi! I just found this article, I would like to know your opinion: http://www.wired.com/science/discoveries/news/2007/07/autistic_robot
July 16, 2007 at 5:23 pm (Edit)
Sourcebooks is proud to present the new book What You Can Do Right Now to Help Your Child With Autism, by Jonathan Levy. I was wondering if you would be willing to review this effective guide for your blog.
Autism is now more far-reaching than ever, with over 300,000 children affected in the United States and growing. It is a complicated and frustrating disorder that leaves many parents, families and teachers overwhelmed, not knowing what to do.
What You Can Do Right Now to Help Your Child With Autism, offers parents 10 specific ways to help their autistic children interact better in the world. The techniques Jonathan outlines in this book were developed by the Autism Treatment Center of America and have produced dramatic results with children whose illnesses range from mild Asperger’s Syndrome to severely autistic. Even following only some of the 10 suggested methods can produce positive changes in autistic children. Of the over 800 families that Jonathan has worked with in the past 12 years, only 3 did not see differences in their children.
If you would like to read more about the book, I have included the press release at the end of this email. Or you can check out our website (www.sourcebooks.com).
Please let me know if you’re interested. We would love to have you review What You Can Do Right Now to Help Your Child With Autism.
Best,
Jocelyn
Jocelyn Kalmus
Publicity Department
Sourcebooks, Inc.
630-961-3900 x 352
radio.publicity2@sourcebooks.com
10 Things You Can Do RIGHT NOW
to Help Your Child with Autism
According to a recent article in TIME magazine, the latest studies into autism suggest that as many as 1 in 150 kids age 10 and younger may be affected by autism or a related disorder — a total of nearly 300,000 children in the U.S. alone.
Sourcebooks is proud to present What You Can Do Right Now to Help Your Child with Autism by Jonathan Levy (ISBN: 978-1-4022-0918-5; Parenting/ Special Needs; April 2007; $14.95 U.S./$19.95 CAN; paperback original).
When a child is diagnosed with autism disorder, parents are often overwhelmed and confused and, most importantly, feel lost about what they can do to help their child. What You Can Do Right Now to Help Your Child with Autism speaks directly to parents, providing them with ten, tangible things that they can do, right now, to work with their child.
10 Things includes the following steps:
1) Don’t React
2) Make Eye Contact a Priority
3) Join the Stims
4) Coping with Crying
5) Give the Child as much control as possible
6) Focus on Attitude
7) Work one-on-one in a nondistracting environment
8) Be dynamic with the child
9) Go directly to language
10) Make sure food isn’t part of the problem
When parents feel their world spinning out of control, What You Can Do Right Now to Help Your Child with Autism puts the power back in their hands to work with – and help – their child.
Jonathan Levy has worked one-on-one with over 800 autistic children, ranging from the severely autistic to the mildest forms of Asperger’s syndrome. He has also worked with people with ADHD, Rett syndrome, Down Syndrome, Cerebral Palsy, and other disorders. For the last several years Mr. Levy has worked directly with parents of autistic children, training them (and their team) directly in their home. Though the majority of his work is in the United States, he also travel to Europe to work with clients each year.
###
Jocelyn Kalmus
Publicity Department
Sourcebooks, Inc.
630-961-3900 x 352
radio.publicity2@sourcebooks.com
July 17, 2007 at 12:58 am (Edit)
Someone tell me, is it just me, or does anyone else get really disturbed when certain permanent conditions are called “diseases”? (In this case, in Jocelyn Kalmus’ post above, autism. But the other day I also saw “alopecia areata” described as a “disease.” I *have* alopecia and I don’t consider it a disease–one small part of who I am, yes, but it bugs me to see it called a disease. So I can’t help thinking that autistic adults feel the same when autism is described that way. (Or am I stigmatizing disease when I say that?)
And: given everything I’ve learned from autistic adults being on-line (Amanda Baggs being the primary person but not the only one) I would tend to be immediately skeptical off the bat of any set of tips that list making eye contact a “priority” with autistic children. I’m not likely to find myself as the parent of an autistic child or to find myself working with one, but if I did I’d never force eye contact on them. When they’re old enough to understand I’d make sure they know that NTs tend to expect it and are likely to project all kinds of negative assumptions on them if they don’t. But the choice would be up to them.
July 21, 2007 at 12:34 am (Edit)
Hi, looking for stuff on language i found your great video, then i browsed and i found : http://www.youtube.com/watch?v=CXPRgFgxBIE&mode=related&search=
the mother’s hand and demands, it was just too much and came back what you said about what we do with the ‘others’ -the non-war power money-hungry. good night, regine
August 8, 2007 at 6:01 pm (Edit)
yo amanda,
this here is a super-general comment. so…. here goes the gener(e)al(ity:
i’ve been reading yer site fer months on/off, and checking out yer vid(eo)s. at the risk of sounding worshipful (for i kinda think worship’s a dangerous verb and an even more dangerous action/behavior), you simply rock! my nietzche, my wittgenstein (not that i’ve ever read “the witt”), u are a major philosophical source in my life. thank u.
thank u for speaking to me. thank u for (at times) speaking me. thank u for speaking.
i swear i’m not a stalker, but i’d love to meet u at some point. just to be in the same vibe-age/energy/physical space. but/and/howev, what shall/will be, will be.
you are a conscious m____r/f____r or M/F. take yer semantic pic, both fit (in the yin/yang-ish sense). you inspire. you feed (me). and for that, i am moved, grateful….
oh-so respectfully yours,
rebbie
August 10, 2007 at 7:45 pm (Edit)
When I told a friend that I thought I might be somewhere on the autistic spectrum because the defining features of Asperger’s all fit me to some degree or other, she pointed out that: “There’s nothing inhuman about autistic children, honey. Traits that WE ALL have to varying degrees, fluctuating at different times of our lives, are just more concentrated in autistic people, that’s all…” Following this line of reasoning, of course, autism acceptance is ultimately in EVERYONE’S best interests ‘cos at the end of the day we’re ALL “on the spectrum” – it’s just that most people are on the not-so-visible parts of it ;-)
August 11, 2007 at 10:53 pm (Edit)
Amanda,
I saw your video for staff – the ‘unperson’ one – at youtube and wonder if I might be able to obtain a copy. I work for United Cerebral Palsy in Suffolk, NY and would like very much to show it to staff here, if, of course, all right with you. I’ve never gone on a blog before and I hope I have not done anything inappropriate by posting this request.
Thank you for your time,
Don O’Donnell
August 18, 2007 at 7:04 am (Edit)
Hi I have just set up a new web site Aspergers Parallel Planet. A personal perspective on Asperger’s syndrome, “this site is about my journey and to celebrate and share all the good, positive and wonderful things about having Aspergers, and to help raise awareness of ASD.
I truly love your blog and wanted to ask if can attach to my site.
Kind Regards
Alyson Bradley
September 19, 2007 at 7:48 am (Edit)
Hmm…interesting comments to your most recent blog post, Amanda.
As usual, you hit the nail on the head. I have found that even with people who know better, they still minimize, miss, or wonder why I still do the things I do–whether it’s stimming, unable to move, or need to “recharge.” I had one friend who interpreted my fragile emotional state and lack of eye contact as being angry at her.
Hang in there, and take care of yourself, Amanda.
And I have to say some of the suggestions in that book by Jon Levy are downright abusive. It’s putting the norms of the NT world over the needs of the ASD child. I bet those kids improved not because of the advice in the book, but because they grew up.
September 19, 2007 at 8:26 pm (Edit)
Or they ‘improved’ by his standards while actually declining.
My school would’ve thought it a great improvement if I stopped getting obsessed with strange things, or did math their way, or generally traded my way of being for what they wanted of me, but to me it would’ve been serious psychological damage.
October 5, 2007 at 7:19 pm (Edit)
Hello,
I happened on this website by mistake and I am so glad I did. You are a remarkable person. I have had some bouts with institutionalization myself and I agree with many of your rather brilliant opinions. I am deeply impressed by your insight and obvious high intelligence. I will bookmark this site to read what you have to say. I can’t say this enough, you are amazingly brilliant and I now want to learn more about autism.
I wish for you the best,
Christine
October 18, 2007 at 11:39 pm (Edit)
I’ve seen ‘In My Language’ on YouTube a couple of times, and this time went searching for your name on the internet; which has led me to this blog. I am a teacher, and have — in my short career so far — worked with two children on the ‘autistic spectrum.’ I confess to being confused, to being unsure of what I am doing, and heartily wish there was more information and support available. Your work is inspirational, and the words to tell you so elude me. All I can say is … thank you.
November 20, 2007 at 4:53 am (Edit)
Hi Amanda! I am listening to the CNN.com story about you right now online and just had to add my words of thanks.
You’re probably busy with all the recent attention you’ve gotten, but I just wanted to say I appreciate your sharing your thoughts, feelings, and wit. You have opened my eyes to a wider reality – thank you!
November 24, 2007 at 11:27 pm (Edit)
Hi Amanda!! Wow! What a wonderful person you are! I am so happy to have come across your story. I used to care for a young autistic boy. he amazed me everyday. He was non-verbal but we seemed to communicate in other ways. I feel we grew to understand each other. He would lean on me as we sat. I want you to know your story comforts me by helping me understand his feelings on things. I thank you for speaking to us. Keep up your work as it will really help once people can be more open minded and accept what you’re saying about autism. Thank you!
November 26, 2007 at 6:27 pm (Edit)
Hi Amanda, my name’s Edmund West, I’m from London. I have watched most of your videos on You Tube and as I have Asperger’s Syndrome I was moved, especially by your reply to the Grasp’s ‘Autism Speaks’ article.
I am studying to be a journalist and I want to write a feature aimed at parents of Autistics frightened that their children will never be independent or have a job. Would you mind answering these questions?
1. Do you think it’s best that autistics be taught with normal children or with other autistics?
2. Why is the unemployment rate among autistics still so high?
3. How should schools take advantage of visual thinking?
4. What’s the best way to get selectively mute children talking?
5. In your opinion, what jobs are best suited to the autistic mind?
November 30, 2007 at 4:04 am (Edit)
[…] a forum for your hate and pathetic demands to us to justify our very existence to you. We truly are Ballastexistenz to you, aren’t we? (And I would not be suprised if you feel the same about disabled […]
December 10, 2007 at 7:30 pm (Edit)
Amanda, thanks for putting yourself out there so bravely and selflessly. My son James, 13, is autistic and is basically nonverbal. We adore him. It would be incredible if he could communicate with us the way you are able to, and perhaps someday he will, but in the meanwhile, he is one of the happiest people I know, and that’s the most important thing to me. Thanks again for giving us all insight into your world.
Jill
December 17, 2007 at 8:41 am (Edit)
With or without autism, I find you amazing. There are a lot of people blogging and commenting on the ‘net, but few are as observant and articulate as you.
I started reading your blog a few days ago. I am in med school and hope to become a neurologist one day so I was searching neuro-related blogs. But yours offers so much more than autism information. Thank you so much for your posts and God bless you!
February 23, 2008 at 3:16 am (Edit)
I just watched your video in my class at college. I teach students with Autism in elementary. When I saw your video I started to cry when I heard that you were communicating with the things around you. I have a young girl that is non-verbal in my class but she always sings or hums a song. It sounds just like yours. I so desperately want to commmunicate with her but don’t know how to. Is there a way to learn your language so that I may be able to help her better? I don’t want to change her I just want to find a way to talk with her and help her. Please help me.
Thank you very much for showing me that I was right that she is trying to communicate with me.
Cassandra
February 24, 2008 at 4:18 pm (Edit)
Amanda,
I am a parent of a 14 yr old with autism. Where can I learn more about how to start helping him communicate?
February 25, 2008 at 9:08 am (Edit)
Hey, I love reading your stuff i just got a youtube account god save us from captia, myspace is really crappy about that. Honestly, i love how you write discriptions, you do so well i can almost see things in my mind, even though colors mean absolutely nothing to me. Yes, like I am totally blind. I hope you don’t mind my ramblings. Oh and while i am writing to that dude who ran his mouth think his name was Dar you are a worthwhile artumentitive match, i see you can write, but not back yourself up look dude go live with a disability for a while, go try and walk down the street with a cane and hear a child cry out daddy how come she can’t see if she has eyeballs try to go to the store and shop when you cannot see the product you are buying much less the cash you hand people and pray to god you dont get cheeted, ok, i digress but still. I cannot stand it when “normal” whatever that is people seem to think we are burdons. i am no butrdon ok, i need a little help but still that doesnt make me a burdon. Ok, time for me to make my own blogtina
February 25, 2008 at 9:10 am (Edit)
oh wow that turned out like absolute crap. yall forgive me for not checkin my text there.
March 6, 2008 at 10:07 pm (Edit)
Amanda, Hello. Brilliant video. Saw it from the Wired.com feature article on you. Would very much like to meet you. It would be an honor to interview you. If you’re cool or uncool with that, either way–I understand. Please just let me know. Peace
J.
March 17, 2008 at 11:24 pm (Edit)
Thank you Ms. Baggs for posting this video! My son is autistic and I don’t stop his repititious behaviors. We don’t consider it as bad or unwanted. We understand that it serves a purpose. You are right.Autistic people should be treated with respect.
We ‘typical’ people need to be the ones that need to change and be accepting and loving towards others who are different.
Please keep doing what you are doing.
March 18, 2008 at 3:46 pm (Edit)
Thanks. But just so you’re aware, the “treated with respect” thing was misquoted. The actual person who said that is named D.J. Savarese. (More information on that and other errors here,.)
March 19, 2008 at 1:54 am (Edit)
Ms. Baggs –
Been wanting to write for a while; sorry this is so long.
Thanks so much for your advocacy work. I first heard of autistics.org through your video, In My Language, just a few weeks after my son was diagnosed with autism. I have an autistic nephew as well, so I knew that my child was not “broken,” but it was still difficult to hear. Finding your site and reading essays by unapologetically autistic adults changed my life, and probably his, for the better.
Part of what your work has done for me is to help me get in touch with my inner autistic. I don’t mean to claim the label for myself, and I’m not good at expressing what I mean exactly, but a lot of the things that my son reacts strongly to — positive and negative — make a lot of sense when imagined through the eyes of someone who sees all, hears all, remembers all.
For instance, when winter hit and my three-year-old suddenly stopped letting me dress him in the morning, I was able to think back to my own childhood and realize that the last thing anyone wants to do on a cold morning is take off your nice warm pajamas and put on a shirt that’s been sitting in a cool, dark drawer all night. I started warming his clothes in the dryer before school and everything was fine.
This is just one example of how reading essays like the ones posted on autistics.org has helped me understand my son and adapt our world to his needs instead of expecting him to “get over it” or learn to navigate the NT world. He’s starting to learn to speak, which makes my job easier, and I am grateful for that. But I’m working hard to make sure that he learns language on his own terms, to give him a vocabulary to talk about what he wants to express without imposing NT values on him.
I’m not trying to say I’m the greatest mom an autistic kid could ask for. Usually I figure out why he’s upset about something *after* the fact, but I’m not too good at anticipating what’s going to set him off (besides obvious things like loud noises and sudden transitions). But being able to hear the experiences of adults with autism is so much more helpful than the thousand and five propaganda interviews with Jenny McCarthy that have flooded mainstream media. I know what it’s like to be an autism parent. To better serve my kid, I need to know what it’s like to be an autistic person.
So thanks for your writing, your web site, and your constant vigilance in the fight against groups that want to fix my kid. My son and I are grateful that people like you have paved the way for people like him.
March 19, 2008 at 6:50 pm (Edit)
Your doing a great job Amanda. Your showing the world what they need to know about Autism and my son and I both thank you :) .
March 21, 2008 at 9:14 am (Edit)
Amanda,
your work as a communicator and writer and videographer is awesome. You are making the world a better place for all of it’s residents. I have been captivated by your site and really appreciate all of the folks that write. I can feel the warm and caring thoughts that many of your readers and watchers are sending to you and your family and friends. I am joyful that the time has come – with the blessing of technology, that I and others are able to keep in touch with you and your work and the countless others who are putting their energy – which is hugely inspirational – out into the world.
You have made my celebration of Spring’s arrival very special. Many thanks to you and yours and best wishes
joanini
April 3, 2008 at 4:56 am (Edit)
Hello Amanda. I just wanted to say that you have a wonderful personality and I am very proud of you and the things you have accomplished.
April 3, 2008 at 8:07 am (Edit)
Dear Amanda,
I don’t know if you remember me. This is Wajahat Ali, your old classmate from [elementary school] (Bay Area.) Just wanted to say hello and much congratulations on all the amazing work you are doing at enlightening people’s minds and erasing stereotypes. I just saw your special on CNN and recognized you. I hope you are well. Write back if you ever get time. And again, keep up the wonderful work.
April 7, 2008 at 1:01 am (Edit)
Amanda, I would love to hear from you! I just watched the special on CNN and was overjoyed to learn about you, I am a teacher, special needs, and work in a school that only has special needs students. We have students with autism, down’s syndrome, speech-language impaired, profoundly mentally handicapped, trainable mentally handicapped, emotionally handicapped, ADHD, tube fed, in short, all with special needs. I have always believed that there is this inner voice in my students and because of my dedication and love for my students, they do understand me though I need to learn to understand them more. I loved how you were able to break that barrier and show many how much you are like most, just in a different way. I would love to share with you and would be honored to be a friend. Can we share and communicate and through you, I learn more to help others? I too love cats!
Janet
April 21, 2008 at 11:14 am (Edit)
[…] community’s rethinking of autism here. In a series of YouTube videos an autistic woman, Amanda Baggs, challenges the conventional wisdom and makes her case for autistic people’s intelligence and […]
April 22, 2008 at 10:07 am (Edit)
Dear Amanda,
maybe you’ll pleased to know that you have a page in Italian on the website of my charity association, Progettoautismofvg.
Hi, you’re doing a great job
thanks
paola,
mum of mattia, autistic, 5
May 1, 2008 at 3:12 pm (Edit)
Hi Amanda
I have been researching autism and online communication for years and I have been reading you for a long time. I am also the mother of an Aspie child, almost teenager.
I am fascinated by what you write and I would like your permission to include some of your reflections in my research about identity, Internet communication and ASD (http://www.ucc.ie/en/iscl/). Of course, your authorship will be respected. My hope is to help filling the lack of understanding of the ASD/Aspie experiences and discourses, unfortunately a common problem in academic environments. If you wish to contact me, I will be honored
Thanks
Martina
June 25, 2008 at 7:57 pm (Edit)
Dear Amanda I finished my second degree last spring in social work. I started on my masters degree but had to drop out. one of the professors suggested i might be an aspie, funny thing as I have been working on a connection between the transgender community. There definitely is. As an adult I have learned to compensate but still have real difficulty. From my own experience it helps to put into words the hurts and learnings.
July 1, 2008 at 8:38 pm (Edit)
hello Amanda, i found you (exuse my french but i am french, so i’m going to be little bit awkward in my english ) on the WFMU radio blog (check it out if u don’t know it’s great radio). I actually found your vidéos first and that’s what i want to talk about ( the cat, the boiling, the colors and the pitch, etc). I’ve been studying art, and i am now something like an artist. i don’t know when you started this video work, but please keep doing that, it’s great work, one of the best i’ve seen recently. I mean, you manage to mix documentary ( almost scientific subjects, clear explanations…) with poetry ( the cat, your dance, the text to speech voice ( which i know it’s not an artistic choice, but it gives me the effect of cold poetry).
Ok ,i’m not a very good art critic and i’m saying banality and the fact that i studied art doesn’t mean anything, but, girl ( i also act like a cowboy sometimes) i’ve been seeing shit loads of stuff, and your stuff is great.
i’m going to read you now. I’ve only read the About stuff and before that i was just like an average fool doubting if it was realy you that was writing and filming. You killed these doubts like a knight killed a dragon, ( i would be the princess) .
So, thanks ( maybe you’re a princess disguise in a knight outfit but i don’t want to be the dragon. Hum… let’s say you’re are a princess , i’ll be the forest. No. You’ll be the queen and i’m some kind of solitary monk admiring you. ) so thanks.
September 22, 2008 at 7:51 pm (Edit)
I salute your courage and your willingness to stand up. You are amazing. My wife and I love you.
September 23, 2008 at 10:23 pm (Edit)
Dear Amanda,
Your blog changed my life. And I don’t mean “it’s a testament to the strength human spirit” or somesuch.
When I first came across it, I read some of your general and advocacy posts and thought: “Wow. This is how I’d like to write some day. I can’t help but read some more!” So I read more and more, and then, the overbearing ladder of achievement I wasn’t even aware of having in my mind, crashed. Cognitive dissonance is awesome – and I think my own ASD-like quirks helped :) It was a very liberating experience. Afterwards I still kept trying to measure up to all sorts of imaginary standards, but my mind had begun realigning itself with reality.
Now, I’m finally at peace with myself, and it feels great, and makes me a better person. Thank you.
September 25, 2008 at 11:23 pm (Edit)
Hi Amanda, I have two young children diagnosed with Autism, and I believe that I am an undiagnosed autistic. Anyway, I wanted to share with you some images I made in response primarily to ‘Autism Speaks’. Hope you like them, feel free to use them if you want to.
Kind Regards,
Christine Rogers
September 25, 2008 at 11:24 pm (Edit)
Thank YOU Amanda! You inspire and change us in and out by amazing example. I just blogged about you in the Gaia community and social networking site where I believe your incredible ideas, intelligence and self-advocacy would be widely understood, appreciated and supported. I/we would love to see you present your ideas widely and even at conferences like TED.com so that larger influential audiences and people with the a desire and ability to make profound change/s can be deeply impacted and moved to action by your ideas and being!
Keep inspiring us and sharing openly and heartfully as you do/are!
October 15, 2008 at 9:32 pm (Edit)
Just found your blog Googling “extroverted Aspie” and am excited to read more.
November 14, 2008 at 8:22 am (Edit)
[…] is the blog of this passionate autistic woman. This is how she describes herself and the purpose of […]
March 12, 2009 at 7:51 am (Edit)
Once someone reads your blog or sees your videos, the case is closed. No longer can anyone deny the absolute personhood of someone with disabilities. I wish everyone in the world could see your work. I am VERY sorry to say that before seeing your work I honestly did not know how much awareness someone with autism had but there was an incident I witnessed that made me start searching. I was at a very busy public park one day that was attached to various government buildings so the flow of people was heavy. As I was pushing my child in a swing, I saw this man grabbed by the front of his pants and was rapidly forced to walk backwards by his caregiver. It was done in a forceful, intimidating way that frieghtened me. He was backed into a fence with his caregiver in his face. I`ve never been around autistic or cognitively disabled people much because society segregates them starting from our earliest years in school so I was never in a position to really think much about them or definitely not to interact with them so my knowledge was almost zilch. Anyway, seeing this grown man backed up like that made me take notice. I decided I better watch him because I was afraid he might be abused yet the idea of him being abused scared me too because I knew I would have to do something but I didn`t know if I would just be told this was the only way to deal with him. I was afraid that I would be told the caregiver is the professional who knows what he is doing so I need to mind my own business and stay out of matters I truly knew nothing about. Nevertheless, I felt deep inside this was wrong. My heart was pounding and crying for this man. Then it seemed like this man saw me watching him and it seemed like that embarrassed him that I saw him treated this way, yet I unfortunately wondered if that was possible since he was obviously disabled in a cognitive manner. I honestly did not know if he could be aware or understand since I had heard that autistic people were completely detached and unaware. I had heard in news programs that they were not even able to give and receive love from their own parents much less society and that is what distinguished them as autistic. Nevertheless, I tried not to look so obvious in my watching to not embarrass the man but I could not stop watching lest the man was struck or hurt in some way. I was truly scared for him. I began praying with all my might for him. I`m guessing that his caregiver wanted him to use the restroom but he did not want to go because he had been pushed next to the restroom. So the man jumped up and down to express himself. The caregiver made him stop. Then he began hitting his own head. The caregiver again made him stop. The man stomped his foot so the caregiver forced him to sit as he towered over him. The man obviously could not talk but he let out a screech like an eagle in a cage. I shall forever remember that screech. Finally the men went to the restroom as the caregiver waited. My heart was still pounding and I was still praying. I was wondering if the look I saw in his eyes was real, one of humiliation or was he capable of understanding and feeling such an emotion. I did not know but I knew I could not stand watching the man treated that way yet I couldn`t leave until I knew he was okay. It was ripping my heart out and as a mother I wondered if his parents knew, and if they knew how would they feel. All of a sudden this man became someone`s beloved son in my eyes. I realized I would be mortified if a teacher treated my son in this manner. I realized to his mother he must be her treasure yet he was not being treated like a treasure. That bothered me deeply. I wondered if his mother was trusting this caregiver and believing in the care her son was receiving, yet because the man couldn`t speak the mother just saw him and thought everything was okay. I felt for the mother. Then a strong sense came within me that I could never let my children fall into the hands of any government institution. I felt I must protect my children with all my might. Then the man finally came out of the restroom and was hopping and twirling about as the caregiver ran along beside him. I watched until they went in the building. Now, after reading just your introduction to your blog and seeing your videos on Youtube, I have no doubt this man could feel and understand which makes the whole situation that much more terrifying to me. If he could not understand, then it would not be so degrading but if he could clearly understand, how sad and horrific it is. I wish all caregivers throughout the world could see your videos and read your blog. It would change perceptions 180 degrees. I know if I ever meet an autistic person, I am going to treat them like a person. I think before I would probably have sort of ignored them because I honestly would not know how to communicate with them, but not now. I know better now and will do my best to make them feel included, accepted, and respected as an equal in every aspect of the word. I will also share your videos with others to open people`s eyes. I am going to read more of your blog so I can come out of my shell of ignorance. Thank you for your excellent work!
March 14, 2009 at 6:13 pm (Edit)
PJ:
Unfortunately, there is still a great deal of ignorance out there about autism. To date, most of the people who try to describe what autism means and what it is have been NON-autistic people who only know what they see from the “outside” looking in, so to speak. Many autistic people do have non-standard body language: they feel the same range of emotions as everyone else, or sometimes even MORE intensely than others do. But because their body language and facial expressions don’t map to their emotions in the same way that it does for other people, frequently people in their environment may not recognize the ways that they respond to their environment. For example, many autistic people do not make eye contact–in fact it can be sometimes painful for them to do so, or feel very threatening. In American culture and in some other cultures, eye contact is a critical form of acknowledging the presence of another person: those of us who have been raised in a culture that puts high value on eye contact instinctively assume that someone who isn’t making eye contact must be ignoring us or not aware of us. But this is simply not a valid assumption with an autistic person. Even a blind person (who cannot make eye contact either, but for a different set of reasons) knows enough about social signals to find other ways to indicate that, yes, they’re quite aware that you’re here and you’re talking to them and, yes, they’re listening to you. But an autistic person doesn’t do these things, and thus may continue to be perceived as being oblivious to everything when they’re actually not at all.
Or, it is assumed that a person who does not respond right away to a question must not have heard or understood the question. But sometimes what might actually be going on is that the person has a hearing disorder in which sound is so severely distorted (no, NOT necessarily deafness, but sound distortion like what you might get if you tried to listen to a very poorly tuned radio station) that it takes them a minute to recognize the sound they hear as speech, and moreever as speech directed at them. Then maybe on top of that they have a linguistic processing disorder which means it takes them an extra 10 seconds to process the words they hear in a way that makes sense to them. But by the time you pause that long, the other person has likely given up on you and moved along, giving you no chance to respond.
I’m not autistic (I’m Deaf, and I have attention deficit disorder, but those are different disabilities from what I’m describing here). But I have learned these things both through Amanda’s blog here and also via other blogs by autistic people (eg., http://aspergersquare8.blogspot.com/ … http;//thiswayoflife.org/blog … http://qw88nb88.wordpress.com/ )
But it is only in the very recent past that Autistic adults themselves have organized themselves into organizations, or had avenues for expressing themselves to a wider audience such as via blogs where they don’t need to worry as much about how non-autistic people might mis-interpret their body language. And what autistic people say of themselves and their experiences has not yet filtered into wider awareness even among some parents and some “experts” on autism. On one hand, there are some parents and some experts who do recognize that autistics are their own best experts on what it means to be autistic. But on the other hand, there are still many who either just aren’t aware of autistic adults like Amanda who are sharing their own experiences or who are aware, but who refuse to recognize the importance of consulting people with disabilities ourselves on our own experiences and frames of references.
Amanda’s blog is excellent not only for understanding more about autism but also for thinking more broadly on disability rights issues and human rights issues in general. Many of her posts that SEEM to be about autism (because they draw upon her experiences as examples) are actually about much broader topics on power imbalances (and the abuse that can result), or about disability rights and human rights, etc.
March 19, 2009 at 11:33 pm (Edit)
First time on your blog, I like it.
will try to read more in the next days :)
March 20, 2009 at 3:56 am (Edit)
You’re absolutely amazing, Amanda.
March 21, 2009 at 12:43 pm (Edit)
I love your videos, blogs and sites. You are a true philospher for the 21st Century. Keep up the fantastic work!
April 4, 2009 at 10:04 pm (Edit)
i found you through your video “in my language” nothing short of brilliant!!!! even without the translation (which actually translates “our world back to us!) you speak clearly to your own experience.
real poetry!
i also found interesting the fact that you have to prove that you exist: the idea that we can’t be both brilliant and “crippled” ; that by being dis-abled, we must be uniformly inferior than everyone else, or be accused of fiction or deceit!
so glad to have found you!
emma
April 18, 2009 at 3:21 am (Edit)
Your website is brilliant. You’re a bright, intelligent person and I enjoy reading your blog. :)
June 23, 2009 at 8:19 pm (Edit)
Hi! I was wondering if you would share with us how you learned to read. I spend time with many individuals with autism and think that if they could just learn to read/write they would get much greater joy out of life. Thanks so much for sharing all that you have with the world.
June 24, 2009 at 6:15 am (Edit)
I think I covered that somewhere. I was hyperlexic so I learned to read the way most people learn to speak — without meaning to. Reading comprehension was a different matter, but just plain reading, I had down pretty early. So I’m pretty useless as a person to talk to about how I learned to read.
I think I talked about this elsewhere but I can’t remember which posts.
July 17, 2009 at 12:09 am (Edit)
I was doing a project on Autism, was told to go to you tube and plug in Autism. I did so watched a couple of videos and was not caught until I came to your video. I wanted to see how adults with autism function in daily life. I was amazed and incorporated your video in my project. People do deem you very different or others would say retarded. I found you to be more intelligent than myself. Yes I may process things faster than you in some aspects, but you have me beat in intellectual intelligence. You have made me look at all people with disabilities in a new light. I have an aunt who has schizophrenia and due to a lack of education I was always scared of her as a child not looking at she thinks different than me but though to believe she’s “crazy”. I want to thank you for helping me to educate my children that we are all the same just look, think, act and react differently. God made us all the way he wanted us to be. We all have a different purpose of being here. You are an awesome teacher to someone who has a bad perception of people with autism. Once agin I would like to say thank you.\
Cynthia
October 18, 2009 at 6:49 pm (Edit)
Hello,
I am the father of three amazing children. One of those ‘amazins’ is an 8 year old named David who was diagnosed as autistic when he was 2.5 yrs old. I have been all over the spectrum as to how I feel about this. Is it something that can be ‘trained’ out of him, or is his diet wrong, what did we do wrong? etc.etc.etc…. but I have always had a strong underlying feeling that I just need to keep from getting in his way. My wife and I know that he will always need some form of assistance but we are working hard to see that our help isn’t in the form of being a puppet master.
I play with david, watch him just like I do with all of my kids and I can’t help but wonder how intelligent he really is. I have also felt that it wasn’t his failure to communicate with us but our failure to communicate with him. Your ‘EYES’ post really hit home. He is developing a wonderful vocabulary and his speech is good, but I can see he doesn’t like using it. I watch him surf the net looking for his favorite thing like water parks and fire trucks. I wonder if a speech program would aide him or not. He learned to ride a bicycle in 30 minutes. No joke. My wife plopped him on it and he was riding it like he was born on it.
We homeschool all of our kids. Primarily because of david’s first day in early intervention. They told me that their goal was not to ‘cure’ him, but to get him to assimilate into a classroom. Translation: sit down shut up. We pulled him and have never regretted it.
I’m rambling. I do that when I talk about my favorite subjects. (my family) ;)
Thank you for posting. I will be back again and again.
You are truly a miracle. My eyes have been opened like they have never been before.
John Halgren
December 24, 2009 at 3:25 pm (Edit)
[…] She said on the program what I have always believed since I was young: it’s a two way street. I believe I found the direct link to her blog, if I’m wrong, feel free to drop a note: Amanda’s Blog. […]
April 1, 2010 at 5:55 pm (Edit)
[…] “about” page of her blog gives a crash course in the politics of the subject. I’m not endorsing any position or claim […]