Monthly Archives: April 2006

What sorts of people I tend to relate to, identify with, etc.

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I’ve written before about there being different sorts of autistic people, and relating more to some sorts than others. I’ve never been able to articulate what it is that makes up the sort of people I am more likely to relate to, because it’s always been intuitive. But I think I’ve finally figured out some of the elements. So here are my rather self-centered “wow this person is a lot like me” sort of criteria:

Autistic or autistic-type stuff

  • Exceptional spatial abilities. This does not necessarily mean exceptional visual abilities, although it can. I mean the ability to map space, no matter what senses are used to do it. I’ve met a blind man with a diagnosis of “severe mental retardation” who has better spatial abilities than I do, and mine are pretty good. I don’t think he was using vision to map things, but he was mapping them.
  • A sense of all languages and all symbols as being foreign languages, and as continuing to be foreign languages no matter how superficially proficient we become at them. A sense, not philosophical but gut-level and often uncomfortable, that language and other symbol is a strained abstraction that we throw together over reality without ever touching it.
  • Figuring out some major aspect of language-as-communication-non-autistic-style much later than normal (if ever), and therefore having understanding of something from before that.
  • Perceiving what surrounds us in ways other than most people would. Not just “hypersensitivity” but a whole different understanding. For instance perceiving my wrist brace not as a “wrist brace” but as a potentially bitable pattern of a certain texture and color and so forth. (No, not because of “weak central coherence,” because of a very different perceptual organization.)
  • Having different perception of this sort be common enough (not just fleeting) in our lives that we understand the world mainly through that kind of pattern, not through intellectualizing categories. (Not that we necessarily can’t intellectualize categories but this would be as much of a “second language” as language, and viewed as a clumsy backup if anything.)
  • Approaching language from this same sense of pattern, rather than the usual approaches to language.
  • Having deliberate movement distant and elusive. (Automatic, cued movements might not be.)
  • Having many “typical skills” appear and vanish and appear and vanish, rather than staying put.
  • Having many shifts in abilities, whether seemingly “progress” or “regression,” on a regular basis.
  • Going from extremely athletic and agile to closer to immobility with age (er, much younger than most people do, that is).
  • At least sometimes requiring assistance moving.
  • Shutdowns regularly, not just sometimes.
  • Ability to read and use the same sort of body language I can read.

Life experiences

  • Institutionalization, in nearly any form.
  • Having a wide variety of ways you’ve been viewed and categorized (from “no future” to “good future” etc).
  • Having most of your most important abilities viewed as non-existent, worthless, or both.
  • Having at least a little background of being valued on an equal level with non-disabled people, regardless of professional decree of “severity”.
  • Having experiences with both integration and segregation.
  • Coming from an extended neuro-atypical family.
  • Noticing at some point that the world seems to have no place for you, reacting against that, and having that response medicalized.
  • Having people constantly confused about what you can and can’t do and attributing all kinds of traits and motivations that aren’t there.
  • Knowing one of the unspoken “institution languages”.

Personality traits

  • Sense of justice.
  • Lack of reflex-level trust of authority.
  • Belief in love (not the romantic kind) as something other than an emotion or a fuzzy feel-good stereotype
  • Not exactly a personality trait, but mystics in the old-fashioned, non-fluffy, not-synonymous-with-“psychic”/”occult” sense of the word (quite often not the people you’d suspect, and not going to be parading themselves around as special). For lack of a better term.
  • Either reserved or “autistic” about display of most emotions, but not unemotional. Just not throwing emotions in your face and demanding a response.
  • Optimistic pragmatists. :-) (Meaning people who are very practical but don’t use being “very practical” as an excuse to never change anything or to assume that the status quo is all there’ll ever be.)
  • People who will treat political problems as political rather than emotional, more likely to view political change as a solution rather than the “therapy culture”
  • Understanding and happiness with the fact of being autistic, at the same time as not necessarily being the stereotypical “HFA/AS” type.
  • Enjoying spending time with people without necessarily talking.
  • Not trusting that something exists just because psychiatry or some other such profession says it does.

Note that this list isn’t exhaustive. It’s not meant to be diagnostic of anything. It’s not meant to say this is the best way to be autistic, or the only way to be autistic, or the differentiation between autism and Asperger’s and HFA and LFA and all that crap. Not all of it even has a thing to do with autism. These are just the things I end up identifying with in other autistic people.

It’s also important to note that some of the things I’ve listed in ways that sound like deficiencies, I’ve only listed that way because I don’t know the words for how to say what I really mean. “Lack” of certain kinds of thinking means a whole kind of patterns and perception and so forth that most people seem unable to use. I don’t know how to describe that. “Lack” of certain kinds of movement… likewise, only I have fewer words. Many things that involve “not learning” one kind of thing, are that way because there’s something else going on, “underneath”, that I can’t describe.

This isn’t even “the only people I want to be around”; I’ve had good friends who can’t navigate the world without language or conceive of anything outside of it. It’s just “who I identify with the fastest, who I often communicate with the easiest, etc”. I’m sure other people have totally different, but overlapping in some areas, lists. Also, not everyone I identify with this way is formally recognized as autistic. Many have other labels, or none at all, but there are commonalities.

Two interesting autiebiographies

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The Feeling's Unmutual The Feeling’s Unmutual: Growing Up with Asperger Syndrome (Undiagnosed) consistently reminded me of several people I have known, or still know. I keep wanting to recommend it to all of them. For whatever reason, all the people it reminds me of are male, as is the author.

I found out that he’s the same person who wrote Anne Droyd and Century Lodge, which I’m now going to have to remember to put on the booklist. It’s a children’s book with at least one character who seems autistic. But he wrote and published it before he knew anything about autism.

I think what I liked the most about it was that he interposes his thoughts — for a long time, unfortunately, thoughts of confusion and self-loathing — in his descriptions of events throughout his life. He talks about being a kid who loved Doctor Who and proselytizing his religion, but didn’t know how to really talk to most people, and had few friends. He was regarded as “a little slow” at school. It’s really a very common sort of story, in a way — I wasn’t kidding when I said it reminded me of a lot of people I know — but it’s well-told.

(Note: “Common” isn’t an insult here. My sort of life story is very common too, and one of the reasons, among many others, that I’ve never written it is because others have already covered the same ground better than I could and I’m interested in writing about different things than that, if I’m going to embark on a lengthy writing project.)

Finding a Different Kind of Normal Finding a Different Kind of Normal: Misadventures with Asperger Syndrome is another good and fairly recent autiebiography. The woman who wrote it is an artist who grew up with a very rebellious personality, and did a lot of things and joined a lot of causes more to rebel than because of her beliefs. She eventually ended up in prison, and talks a lot about her experiences there, where she later made a strong effort to return after realizing it may have been one of the few places she felt like she belonged.

Donna Williams writes an introduction to this, that urges people (including autistic people) not to blast the author for telling this story, which she says is less “acceptable” than many of the other autistic people’s stories that are published out there in print. I’m not sure why that’s necessary. I don’t see anything particularly wrong with this story. It’s certainly less standard than, say, Will Hadcroft’s story, but just as there’s nothing wrong with standard, there’s nothing wrong with non-standard either.

These are both books, I think, that are primarily about people, not “Hello, this is my life and this is how it fits into the DSM.” I’m sure some people will dissect them for DSM-style characteristics (and not just of autism), because that’s what people do, but that’s not what the authors themselves are doing. (Will Hadcroft even has a “Hadcroft Syndrome” at the end of his book that is very similar to “Neurotypical Syndrome”.)

I think that’s my main criterion for what I like in autiebiographies, before I start looking at whether I agree with the authors on various things or not. Does this read like an autistic person, or a textbook’s dissection of an autistic person. I have another book I haven’t read yet, but that is written by an autistic person and two non-autistic people. It seems like it’s going to be a textbook-type “here is a case study of an autistic person” book, and like I’m therefore not going to enjoy it nearly as much. The issue there isn’t whether someone is stereotypical or not, but whether their life story is doctored to the stereotypes or not, which is at times a subtle difference but a very important one.

I think a lot of autistic people I’ve known, particularly a certain sort (that I have no name for, but that seem to get along with each other well and that are unlike me in many ways, like me in a few ways, and again for whatever reason mostly male), would really see themselves in Will Hadcroft’s book. At least, I see them a lot in his book.

Both of these books are fairly standard autiebiographies, in that their purpose is to tell a story and they tell it from a point of view that is acceptable to most readers.  They’re well in the range of things that aren’t going to make people too uncomfortable in their basic viewpoints about the world.  But they’re also fairly good ones, and there are other reasons to write books than to do that.  I liked them.

Booklist updates.

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I’ve added the following books to the Autistic Authors Booklist and Facts page:

  • Sofie Koborg Brøsen
    • Do You Understand Me? My Life, My Thoughts, My Autism Spectrum Disorder (FUTURE) (translated from Danish, Kan I forstå mig?)
  • Sharon P. Cowhey
    • Going through the Motions: Coping with Autism (2005)
  • Luke Jackson
    • Crystalline Lifetime: Fragments of Asperger Syndrome (2006)
  • Wendy Lawson
    • Friendships: The Aspie Way (2006)
  • Jonathan Lerman
    • Jonathan Lerman: The Drawings of a Boy with Autism (2002) — with Caren Lerman
  • Tito Rajarshi Mukhopadhyay
    • The Gold of the Sunbeams: And Other Stories (2006)
  • William Stillman
    • The Wizard of Oz (1990) – with Jay Scarfone and John Fricke, not autism-related
    • The Wizard of Oz Collector’s Treasury (1992) – with Jay Scarfone and Tim McGowan, not autism-related
    • The Wizard of Oz : The Film Classic Comes to Life With Sound and Stunning Three-Dimension (2000) – with Jay Scarfone, not autism-related
    • The Wizardry of Oz: The Artistry And Magic of The 1939 MGM Classic – Revised and Expanded Edition (2004) – with Jay Scarfone, not autism-related
    • The Everything Parent’s Guide to Children with Asperger’s Syndrome: Help, Hope, and Guidance (2005)
    • The Everything Parent’s Guide to Children with Bipolar Disorder: Professional, Reassuring Advice to Help You Understand and Cope (2005), not autism-related
    • Autism And the God Connection: Redefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness (2006)
  • Gilles Tréhin
    • Urville (2006)

“Sibling issues” in the New York Times.

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The New York Times published an article, earlier, on siblings of disabled people. While they did publish Kassiane Sibley’s response, they also published the following response from Vera Kornylak (emphasis mine):

The emotional burden of having a sibling with a disability pervades so many aspects of “typical” adult life, among them making decisions about marriage (some spouses don’t want that extra child for life), having children (constantly worried your children will be disabled) and deciding where to live (must be close to facilities that provide long-term care).

I’ve always been puzzled by “sibling issues,” myself. I have one autistic and one non-autistic sibling. I’ve never had a problem with either one of them that came back to whether they were autistic or not. I have no idea what “issues” I’m supposed to have with either one of them based on autism-status. The idea of going to a support group of other siblings horrifies me, in part because I’m probably exactly the sort of person they want to get away from and I don’t fit into the plans very well. (Hint: For a lot of the things that really are hereditary, there’s more than one of us per family.) Also because I’ve had enough experience of support groups for family members, to know that they often degenerate into bashing disabled people in general (which is sanctified in some way as “sharing their honest feelings”) and our presence can be very unwelcome because it disrupts the atmosphere where that’s okay.

The phrases I highlighted showed some of the more disturbing aspects of Kornylak’s attitude. Apparently if we need assistance with things, we’re an “extra child for life”, and an “emotional burden” on our families just by existing. She may have loved her sibling as a kid, but for some reason she doesn’t want to bring someone else like her sibling into the world, and apparently agonizes over it. And she thinks she has to live near an institution. (Although in all fairness I might rather live in an institution than with a sister who thinks of me that way, and that’s saying a lot.)

One of my friends before, I met through an agency we were both clients of. She had very little conventional speech, and I watched her carefully to learn (for myself) some alternative ways of communicating, since she never used technology for that purpose. As far as I was concerned, she was clearly very aware of what was going on around her, more than most people even, always reacted to it, and was always saying things about it. And very socially adept, with tons of friends. Which is why I was surprised by her brother’s attitude towards her.

When I first met her, she lived with her brother. And we would stand around, and he would talk about her as if she was not there at all. Right in front of her. He’d say things like, “She looks at the TV listings for a long time before picking what to watch, but who knows if she actually can read things like that, I mean, you know…” trailing off into some sort of assumption of incompetence that he assumed we all shared. He also talked openly about some pretty disgusting opinions of her. He seemed puzzled by my anger at his patronizing attitude.

He was, however, reportedly impressed by my communication device. He’d never heard of anyone who couldn’t speak being able to think or communicate. Which meant that he thought of his sister as non-thinking and non-communicative, despite the fact that he communicated with her on a regular basis. How anyone could look at her and think that baffles me. I can still remember exactly how excited she was to move out of her brother’s house into her own house, with the aid of a supported living program that allowed her to get help with some things.

Attitudes like her brother’s, though, tend to be viewed as more acceptable than attitudes like mine, and possibly hers. My general attitude towards him was “I hope he’s not around when I go to see her, because I don’t want to deal with that patronizing jerk.” She was always more animated when he was gone, too. Kassiane is right. They never ask us about our siblings. Mine were okay to me (or only not-okay in ways that had nothing to do with autism status), and I know others who have been okay. But I’ve met a lot of outright nasty ones, whose attitudes towards us as perpetual children and emotional burdens, and whose hope that they have no children like us, are enshrined and encouraged by attention to “sibling issues”.

Yet Another Blog Move, and health update

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I still need to get all the posts categorized on this blog. I am liking WordPress a lot though in the meanwhile (thanks Laura). I’ve imported all my posts and comments from blogspot, and I’m working on hand-moving all the posts from the blog before that one, and then the posts rescued from Google’s cache of the one before that.

In the meantime, I’d appreciate it if people who’ve linked to my blogspot posts would (where possible) edit their links to point to posts here.

Meanwhile, in further “the cure is worse than the disease” news (and I don’t mean autism), my body seems to have decided that the best reaction to the latest migraine drug is to fill up with water just about everywhere, including (in the last few days) my lungs. So I’ve got instructions to avoid salt, take the stockings off that were controlling the swelling in my legs, try to stay upright where possible… a lot of this the exact opposite of the instructions to reduce swelling in my legs and feet. (I guess when they realize it’ll go elsewhere otherwise, they figure it’s better to let it go to feet.) In the meanwhile breathing gets really interesting when I lie down, and I’ve managed to annoy Laura to death with body-awareness questions. (I’m currently trying to ignore all unfamiliar sensations sent to me by my torso because I have little hope of understanding or even locating most of them, and I doubt worrying about it will help.)

And, yes, I’ll call someone if things get any worse. The hope is that the swelling will go down on its own in a week or two now that I’ve stopped the medication and started following those other instructions. But last night was worse than the night before, even though I stopped the medication the day before, so who knows.

This whole migraine medication mess is reminding me of a minor incident back when Michelle Dawson first became notorious and controversial in the mainstream autism world. People were saying that we were not autistic because we lacked certain traits, some of which had nothing to do with autism, and some of which did, but most of which we had or did have. The people at autistics.org posted a response listing a lot of those traits, including a lot of health problems.

At that point, one guy responded by turning it around: “If they have all those problems, and they haven’t fixed them, then why should we listen to their advice about autism? Those things are easy to fix.”

I’ve just stopped my fifth or sixth major migraine-prevention medication. In this case, it was actually working on the migraine, unlike most of the others, but is now causing intolerable and dangerous problems. I’m of course going to keep trying other things: I prefer nasty pain and puking a lot to fluid in my lungs, but I view lack of pain and lack of puking as preferable to either alternative. But this isn’t simple. There’s no formula. Even for things I would rather get rid of, it’s not like they’re simple to fix.

The guy’s reasoning was off in several ways to begin with, but this particular medication mess makes it clear how far off one of those ways is.

Anyway, new blog, yet again. I like this one better than either blogger or the previous blogging software I had.

Old About Page

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This is the old “About” page for this blog. It’s being renamed in anticipation for the new About page that I am (as I write this) in the process of writing. When that page is finished it will be called simply About again.

ballastexistenz-400x100

The logo at the top of this page (used to be at the top of all pages on this website) shows black-and-white images from eugenics propaganda on each side. One on the left shows a man bearing the “burden” of disabled people on his back, and the one on the right shows assorted disabled people. The word “BALLASTEXISTENZ” is written across the middle in letters from a communication board overlay, with pictures on each key. A finger is pressing on the B. To one side, in color, is the face of the blogger. There is a tree in the background.

The eugenics image on the left, I had seen in several places a long time ago, while the images on the right I found this month. The photograph of myself was taken a few months ago, and the photograph of the tree in the background was taken a few years ago. I took and edited the photograph of the keyboard as I made the image.

The reason that I have chosen one of the offensive terms used in the German eugenics movement against disabled people — which, for reference, predated Nazism, was heavily influenced by American ideas, and survived after World War II — is to force people to look at the sentiments that drove that movement, that came before it, and that are still prevalent worldwide today.

Ballastexistenz means about what it looks like: Ballast-existence, ballast-life. Some of the other terms that were applied to disabled people at the same time included leeren Menschenhülsen (empty human-shaped shells/husks), and lebensunwertes Leben (lives unworthy of life).

In using these terms, I do not for one moment forget the gravity of them. The ideas that gave rise to that terms have existed a long time and continue to exist. These ideas threaten the lives and well-being of disabled people everywhere. Autistic people are frequently described in these hateful ways, as empty shells without souls, burdens on our families and society, contributing nothing, ballast that merely weighs everyone else down.

I put this name on my blog in witness to what can happen, has happened, and is happening when real human beings are thought of this way. I am a non-speaking physically disabled and autistic woman who’s lived in institutions, whose income comes from a disability check, and whose services are funded by the state. I am and have been exactly the sort of person who is meant when these awful concepts are used. I and the people I know and love are people, not burdens and ballast and wastes of space and money. All these ideas do is dehumanize us, and in contrasting these words with my real life I hope to show how wrong they are when applied to anyone.

This blog is about assorted ideas, but most will have something to do with human rights, autistic liberation, disability rights, and so forth.

If you want to see my official papers and such, they are there. If you even want to meet me and my case manager and/or staff at the place I receive services to verify I exist, I’d be happy to arrange it, provided you are not someone I’ve made explicit my total lack of desire for contact with. (Due to stalkers and death threats, that offer no longer stands, and nobody ever took me up on it anyway.) My Disclaimer on Assumptions should probably be required reading in addition to this page, as well.

I will no longer be accepting comments that attempt to divert discussion of the issues raised within this blog into an endless discussion of whether I exist or not, or whether I am autistic or not. I have proven myself on multiple occasions to the state of California, to the federal government of the USA, to the state of Vermont, to CNN, and to MIT, with the help of doctors who have known me since I was 13 and relatives who have known me since birth. I have better things to do than prove myself to strangers on the Internet, and such discussions only serve to divert energy from the real issues. I will also not be allowing debate over other autistic people’s existence or authenticity. This kind of gossip is a favorite pastime in the autism community, including among some autistic people, but it is a destructive one.

Additionally, regular readers of and commenters to this blog include, at the very least:

  • Four people who have known me continuously since birth.
  • One person who knew me starting around the age of six or seven.
  • One person who has known me continuously since the age of twelve.
  • Many people who have known me many years in adulthood, including in person and in a fair bit of depth.
  • Many people who know people who have known me continuously since birth.

I am well aware there are people who have known me much less well and for much shorter periods of time, who appear to thrive on gossip. All I have to say on that is, consider that the people who have known me the best and the longest do not engage in or hold with such gossip. And then consider the source.

I will quote from Jim Sinclair’s article Autism Network International: The Development of a Community and Its Culture:

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. [...]

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

This is a blog by a self-advocate who has participated in several aspects of the disability rights movement including autistic liberation, psychiatric survivor, mainstream disability rights, and developmental disability self-advocacy. It is meant largely for discussion of these issues. As such, when I detect any of the above tactics, they will not be allowed, as all they do is hinder the purpose of discussion here, and they add nothing of value or substance. And if it’s not clear, I will not tolerate these or any tactics with similar ends in mind towards any group of people.

Comments from when this was a page not a post:

Note: There were too many comments here for me to edit out all the links to no-longer-existing pages. Please don’t click “reply” on any of these, it won’t get you what you’re looking for.

  1. Dan Wilkins says:

    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

  2. Thank you for your blog. I think I have argued with you on another blog and now I’m sorry. Please accept my apology.

  3. If you argued with me because we had a genuine difference of opinion, there’s nothing to be sorry about.

  4. Tina says:

    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!

  5. Tina says:

    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

  6. James Hunter Ross says:

    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

  7. Tracey says:

    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!!!!!

  8. Mark says:

    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.

  9. salpurdy says:

    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

  10. R.S. says:

    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.

  11. Jace says:

    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.

  12. Alexis says:

    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.

  13. Teri says:

    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

  14. Anthony says:

    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

  15. Sweetpea says:

    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!!!

  16. Nicole Faggioni says:

    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

  17. Lavonne says:

    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!!

  18. Rhonda says:

    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

  19. 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?

  20. Dahr, Mahommad says:

    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…

  21. Hanna says:

    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.

  22. 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.

  23. Kevin says:

    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

  24. raksi says:

    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

  25. 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.

  26. [...] 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) [...]

  27. Angela says:

    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

  28. Marianne says:

    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

  29. d says:

    You are an amazing person. Do you play Secondlife? email me please.

    d

  30. marisa says:

    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.

  31. 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.)

  32. Laura says:

    Hi! I just found this article, I would like to know your opinion: http://www.wired.com/science/discoveries/news/2007/07/autistic_robot

  33. 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

  34. 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.

  35. regine says:

    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

  36. ratrace88 says:

    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

  37. 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 ;-)

  38. Don O’Donnell says:

    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

  39. 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

  40. Rjaye says:

    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.

  41. Ettina says:

    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.

  42. Christine says:

    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

  43. Lorna says:

    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.

  44. Mike/Tokyo says:

    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!

  45. peg Crerar says:

    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!

  46. Edmund West says:

    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?

  47. [...] 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 [...]

  48. Jill Koehler says:

    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

  49. Amy says:

    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!

  50. Cassandra Jones says:

    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

  51. Nancy Dwyer says:

    Amanda,
    I am a parent of a 14 yr old with autism. Where can I learn more about how to start helping him communicate?

  52. 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

  53. oh wow that turned out like absolute crap. yall forgive me for not checkin my text there.

  54. j howell says:

    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.

  55. m.m says:

    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.

  56. 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,.)

  57. J. Dunston says:

    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.

  58. Wendy says:

    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 :) .

  59. Joanini says:

    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

  60. Terri says:

    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.

  61. w. ali says:

    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.

  62. Janet says:

    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

  63. [...] 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 [...]

  64. paola says:

    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

  65. 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

  66. 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.

  67. tintin says:

    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.

  68. I salute your courage and your willingness to stand up. You are amazing. My wife and I love you.

  69. Nita says:

    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.

  70. 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

  71. Darina says:

    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!

  72. wrongshoes says:

    Just found your blog Googling “extroverted Aspie” and am excited to read more.

  73. [...] is the blog of this passionate autistic woman. This is how she describes herself and the purpose of [...]

  74. pj says:

    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!

  75. 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.

  76. powpow says:

    First time on your blog, I like it.
    will try to read more in the next days :)

  77. alicia says:

    You’re absolutely amazing, Amanda.

  78. I love your videos, blogs and sites. You are a true philospher for the 21st Century. Keep up the fantastic work!

  79. 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

  80. Fiona says:

    Your website is brilliant. You’re a bright, intelligent person and I enjoy reading your blog. :)

  81. Amanda says:

    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.

  82. 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.

  83. Cynthia says:

    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

  84. John Halgren says:

    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

  85. [...] 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. [...]

  86. [...] “about” page of her blog gives a crash course in the politics of the subject. I’m not endorsing any position or claim [...]

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