This is an unfortunate addition to my previous post, Temple Grandin, displaying near-textbook “HFA/AS elitism”. Because I have obtained Temple Grandin’s expanded tenth-anniversary edition of Thinking in Pictures. Here are some quotes.

Page 56:

There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual. The development of genetic tests for autism will be extremely controversial.

Page 122:

Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.

I don’t quite know where to begin with this. It’s not just autistic people who can be good inventors, and I’ll leave that part at that.

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-“LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.

She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz, or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

(For anyone who has mischaracterized me as “angry” in the past, I really am angry while writing this post. But I tend to think that being told that you have no value in the world, especially by people in power, is enough to piss anyone off. Being pissed off in situations where it’s natural to be pissed off, doesn’t mean I walk around pissed off all the time. And the fact that I’m mad right now, doesn’t mean I’m wrong.)

Anya Souza is one of my heroes. No, not because she’s “overcome disability” or any of that fake-heroic crap. It’s because of the more traditional definition of hero, a person who puts themselves out there to fight for what is right. The article I Am A Person, Not a Disease describes her fight to stop the prenatal eugenocide of people with Down’s syndrome, which she herself has. I’m not sure Temple Grandin would come up with a lot of “uses” for Down’s syndrome, but Anya Souza seems clear that it’s a part of natural human variation.

Before anyone tells me that Anya Souza is high-functioning for someone with Down’s syndrome, let me tell you about David. I was locked up with David. He had Down’s syndrome and, like a disproportionate number of people with Down’s syndrome, he was also autistic. He made one sound over and over again, and was regarded as “not being in there”. But everyone but some of the staff valued him for who he was. To us, he was another person, a real person, not a mistake or a defect. To some of us, he was a friend. The problem was not that he was autistic, not that he had Down’s syndrome, and not that he was classified as low-functioning, but that he was born into a world where these things are not considered compatible with full personhood.

Let me be clear: When I talk about neurodiversity, I mean all neurodiversity. Not just the people that Temple Grandin happens to find worth in. I am fighting for a world in which there is a place for every single one of us and our value is not even questioned. I know it’s a long way off, but it’s way better than fighting for a world from the standpoint of, as Cal Montgomery puts it, “a legacy…of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever.”

I honestly think Temple Grandin owes an apology to the many, many autistics she has used her position as the most famous autistic person on the planet to devalue. But more than an apology, she owes us a serious attitude change. Not, mind you, just because of our “feelings”: It’s our very existence she could help eliminate in the future.

Azusa of Amorpha writes, in Don’t Take Advantage of Our Good Will:

If you want to get to know us just for the sake of getting to know a plural, any plural, we’re not interested (especially if you want to try to exploit us– been there done that). If you want to get to know us as individual persons, then we’ll talk.

If you replace ‘plural’ with ‘autistic’, you have my current view on things.

I have just read, listened to, and watched (yep, all three) some stuff by Dave Hingsburger around the topic of people whose only ‘friends’ are staff, and whose staff don’t bother to think about how isolated people really are whose only ‘friends’ would never be their ‘friends’ if they weren’t paid to be with them. He describes how this is not real friendship, and how staff’s refusal to acknowledge it impedes the development of real friendship.

He talks, in particular, about how horrible it is for the disabled person to suddenly realize that none of their friends are really friends, but only people paid to pretend to be their friends.

The story of a person’s life is supposed to be personal. If that person chooses to reveal it to a lot of people, that happens, but most often a person will choose to reveal it only to a few friends. Real friends, not fake friends.

Many people believe, however, that the story of my life should be public property. The boldest will tell me outright that it is my obligation to provide them as much detail as possible about my life, that anything else is pure selfishness and avoidance of responsibility. Some of the slightly tamer sorts will simply say, “Tell me your story.” Others are more slippery, and will try to ask in roundabout ways that amount to the same thing but are harder to detect, or will badger incessantly but subtly with little hints about what’s wrong with not complying with their wishes. Some will pull the good-autie/bad-autie split, where good auties tell their stories and bad auties are just weird angry twisted bitter creatures who should tell their stories but refuse to. All show a lack of respect for me as a person, even more so than someone demanding to look at my naked body.

I met a woman once who kept insisting that I “tell my story”. I kept explaining to her that I found her insistence exploitative and demeaning. She kept ‘explaining’ to me that “telling my story” was the most powerful thing I could do. All the other things I was doing, stating my opinion, telling only the pieces of my story that I see fit, are somehow not powerful enough, in her eyes. And she had no clue how disempowering it is to have someone insist they know exactly how to ’empower’ you and you damn well better do what they tell you. (Er…)

If I had a nickel for every person who asked, told, or demanded me to write my autobiography, I would have more money than the royalties from the book itself.

This is invasive. This is demeaning. This is exploitative. Not just when it is done to me, but when this insistence is foisted on autistic people in general. I have been treated like my body belongs to other people, and that they could do anything they wanted with any part of it. This “story” thing is worse. It’s saying that our lives belong to other people, and should be taken by coercion, trickery, or force if we’re not willing to give them out freely. If that sounds uglier than you’d imagined, it’s because it is.

However, this ugly thing is often carried out, like many ugly things, in an innocent disguise. People’s belief that our stories belong to them may not be a conscious one, but it’s implicit in asking autistic people routinely for our stories when the same people would rarely ask a non-disabled complete stranger for the same thing. People’s belief that our stories can and should be taken by force might not be a conscious one, but it’s implicit in the numerous ways they try to convince us to “tell our stories” after we’ve made it abundantly clear that we don’t want to.

I don’t know about other people, but my life story is a hell of a lot more private than my genitalia, and I don’t give out my genitalia to everyone willing either.

The people I’m the most worried about, though, aren’t me. They’re lonely autistic people who are new to the “autism community”. People who’ve never had a friend in their lives, or whose friends left a long time ago, who come onto the Internet, or parent support groups.

And what do they find?

They find people hanging on their every word. They are asked really basic, obvious questions about autism. Things any autistic person would know. And they answer correctly. And people go “Oh wow, what amazing wisdom and insight,” because they don’t realize that they’re doing the equivalent of asking “What emotion does smiling generally convey?”

Then people continue: “You should write your autobiography. You should tell your story.” And a whole litany of questions, often intensely personal ones, ensues, leaving autistic people even more confused about what we’re allowed to have privacy about and what we’re not.

These people are not friends. But a lonely autistic person may not realize that, any more than we always realize at first that paid friends will leave when they quit being paid.

So it’s lonely newbies that I worry about the most, in these areas.

Nonetheless, even not being a newbie, it still wears me down. I know many autistic adults who won’t go near groups dominated by parents, because of this kind of pressure. They have learned that if they want to be considered an individual and interesting person in their own right, they need to hang out with people who aren’t looking for an autiebiography on legs. The single most exhausting part about being around large numbers of un-autie-accustomed parents, for me, is the constant questions, the seemingly insatiable thirst for information pointed straight at me. It’s like walking into a mosquito convention, only instead of blood they’re trying to suck up information and advice. It ends up uncomfortable, itchy, and potentially dangerous.

“Auto-vivisection” is what one of my friends calls this procedure. Ripping yourself open and displaying your insides for everyone to see.

For all autistics, the insistence and encouragement that we tell our stories is a real and problematic issue. Some solve it by telling their stories. Some do so prematurely, and will regret it later, after the irreversible act of publication, after their opinions change, after they learn more about themselves, and so on.

So if the first thing out of your mouth, or fingers, when an autistic person tells you something that you happen to find interesting or insightful, is “Tell your story,” find some way to counteract this impulse before it makes it from your brain into words. Don’t try to soften it with “if it’s not too personal,” just don’t say it. The pressure on us in this department is already immense. Don’t contribute to the destruction of our privacy.

This post has been years in coming. And it might be duplicated in previous posts. I’m having some temporary trouble with memory at the moment.

What, exactly, is the deal with feelings?

Or rather, what, exactly, is the deal with feelings being elevated in importance to the exclusion of nearly anything else?

I keep picturing this scenario: I’m drowning — I’m not a good swimmer to begin with, so that’s possible. I’m close enough to shore that someone can throw me a life preserver easily. Someone is standing there, next to a life preserver. Instead of throwing me a life preserver, the person waxes poetic about his feelings. And my feelings. His feelings of terror and hopelessness. My feelings of terror. His empathy for my feelings of terror. A long, nuanced, beautiful description of the emotional impact of what is going on, at least from his perspective. And he doesn’t throw me the life preserver. He’s too busy dealing with feelings.

I don’t know that that exact scenario would play out. But I remember, along with Laura, begging, demanding, and whatever else we could do, the Housing Authority to clean up their construction practices. There was concrete dust that wasn’t being vented properly out of the building, and it was messing with the breathing of a lot of the people here, including us, who both had asthma. The situation was getting on the level of life and death.

And the response we so often got was someone trying to “validate” our “feelings” about the matter. As if feelings were the issue there. When you can’t breathe, it’s not your fear or anger that you want fixed, it’s your breathing.

In saying things like this, I often get put into assorted categories. “Thinking” rather than “feeling” personality-type. “Rigid Aspie” rather than “sensitive autie”. “Heartless bitch”. Etc.

None of those categories are true. What I am, is a person who is incredibly emotional, in fact. I’ve just learned through experience that there are more important things in life than emotions. I’ve learned that there’s a time and place for “expressing one’s feelings” and a time and place for not doing so. Stereotyping me into one of those “ingrained” personality or neurological patterns denies the reality of learning and choice.

I’ve noticed, though, that there’s a culture that has spread throughout most of, at least, America, if not other places. A therapy culture. One in which emotions are paramount. In which expression of emotions is always okay, and encouraged, provided it’s done in a “respectful” way. In which all problems are the result of someone’s emotions. In which “validating” people’s emotions is supposed to solve many serious problems. And in which there is no such thing as a bad emotion, or an emotion that needs changing. Emotions become sacred things that appear out of nowhere, are pure, and define everything.

Emotions do not usually (certain kinds of seizures, for instance, excepted) appear out of nowhere. They are tied to ideas, experiences, actions, prejudices, and patterns of thought. They are not pure. They are as tied to the world and to the rest of us as anything else.

Emotions are useful in many situations. They guide our responses. They assist us in various ways. But to trust to them, and their expression, without thinking of anything else, is irresponsible. There’s a time and a place.

Knowing these things does not make me an unemotional person. I am an incredibly emotional person. I can be paralyzed by fear, I have a nasty temper, I feel huge depths of joy and affection, and so forth. But I know that, for instance today, when my staff had to run off to adminster CPR to someone, it wasn’t exactly the time to describe in detail how scared I was.

But it seems like a frequent response, for someone who did do that, is to act extremely hurt, and say “I was just expressing my feelings.” As if the expression of feelings is always right, and never open to question, as to whether it was right to express them right then, in that way, or (gasp) even to have those particular feelings.

If a person feels revulsion every time they look at me, as some have made abundantly clear that they do, I think there’s something wrong with how they think about people like me. That carries over into feelings of revulsion. But the feelings of revulsion are not sacred, are not out of nowhere, and they’re not even really okay. They’re products of some combination of attitudes, prejudices, thoughts, misplaced “empathy”, and a whole slew of other things. Those feelings of revulsion can be changed, with changes to those attitudes, prejudices, thoughts, misplaced “empathy”, etc. But to say so is to do something else that’s apparently quite problematic — to “tell someone how to feel”.

And then there’s the neverending situations that I go into with an attitude of problem solving. And get one of two main responses. One is to “validate” my emotions without solving the problem. Another is to react to a real or imagined perception of my emotions, in a negative way, and fail to solve the problem as well, maybe even refusing to do so until I feel differently.

Neither of these approaches seems right to me. They focus on the emotions, or the perceived emotions, or the expression of emotions, rather than the problem. They’re “Sorry I won’t give you life-saving medical treatment until you quit yelling,” and “I’m sorry you feel angry, I hear what you’re saying, I really do, and I empathize. Oh, how I empathize. I wish you did not feel angry. Is there anything I can do to keep you from feeling so angry? What do you mean the problem isn’t anger?”

“Hurting people’s feelings” is also uniformly bad in some circles, even if their feelings are hurt for reasons that have nothing to do with your doing anything wrong. Saying that I oppose an autism cure, for instance, deeply hurts the feelings of a lot of parents and probably some autistic people. I’ve seen some people describe their feelings in detail, in response to the cure thing. (Curiously, it’s often self-pity that they describe. And no, I’m not immune to that, either, I just don’t think it’s the greatest or most truth-revealing emotion on the planet by a longshot.)

Do I want life without emotions? Definitely not. Am I unaffected by my own emotions or other people’s emotions? Definitely not. Am I aware that emotions are only one piece of things, that they are not trustworthy guides to reality, that it’s possible to do devastating damage in the name of “flowing with your emotions freely”, that the “therapy culture” is probably doing more harm than good, that there’s a time and a place? Definitely yes.

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.

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: 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.

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)

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”.

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.