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autism_related_reading_notes [2018-07-02 14:29] rasaautism_related_reading_notes [2018-07-18 15:04] (current) rasa
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 ==== Autism Related Reading Notes ==== ==== Autism Related Reading Notes ====
 +
 +**"Critic of the Dawn" by Cal Montgomery
 +
 +**
 +
 +<blockquote>I remember the first time people who taught me that i was okay and who stood naked in line with me, waiting for a paper cup of shampoo and a turn under the showerhead, on bath nights. Or , "You were misdiagnosed." And i remember the times i could not speak and had no keyboard, the times i slammed my head against a wall over and over until the staff looked for a helmet i couldn't remove, and i am sadly grateful that they haven't known a world in which communication and self-respect are possible only with blood and broken bones.</blockquote>
 +
 +<blockquote>"Disabled person," I call myself. Maybe it's time for a nod to terminology.
 +
 +In Britain in the 1970s, disabled people began to criticize the link between physical difference and social death, began to draw a distinction between impairment-- which has to do with the way we differ from one another -- and disability -- which has to do with the way impaired people are treated in a society that does not plan for impaired people.
 +
 +Disability, on this understanding, is not in-ability but dis-enablement, and nondisabled people are not, in comparison to us, innately able. They are, rather, enabled by society set up to accommodate their needs and not ours.
 +
 +Disability is injustice, not tragedy; unequal treatment, not inherent inequality.</blockquote>
 +
 +<blockquote>"We hold these truth to be self-evident," i read, "that all men are created equal." And i was hooked.
 +
 +I was naive: i was ten, and if i hadn't grasped the ways inequalities played out in the US, hadn't heard of disability rights, hadn't tuned in to criticism of saying //men // and meaning //humanity//, i'd heard of slavery. But in that moment, i failed to make connection.
 +
 +//We hold these truth to be self-evident, that all men are created equal...//I thought it meant that every human being valuable , none more than another. That everyone had a chance, none more than another. I thought it was simple; in my simplicity i thought it was true.
 +
 +I was a child in love with a childish conception of equality. But i was in love. 
 +</blockquote>
 +
 +<blockquote>I am different.
 +
 +"Same as what?" you ask. "Different as what?" The reference point -- the imaginary person around whom society is planned -- is pale and obscure figure, but those who have searched him out report that he is white, straight, nondisabled, educated, mature, moneyed, and male.Those whose sameness to this reference point, this mythical man, has been stressed -- whose struggle in his world has been blamed on choice, on moral lapse -- may quit reasonably insist on their difference. "Disabled and Proud," reads a tee-shirt. Those whose difference from him has been stressed -- whose exclusion from his world has been considered justified -- may quit reasonably assert their sameness. "I am not a puzzle. I am a person," reads a button.
 +
 +As different people experience disability in different ways, have it attributed to different sources, adopt different tactics for different situations, there are shifts between the campaigns of sameness and the campaigns of difference -- and the disability community is shattered, broken into subcommunities with different traditions, different priorities, different dialects to explain different experiences.
 +</blockquote>
 +
 +<blockquote>I know that the tactile defensiveness -- disliking touch -- is impairment, because i look around me and see other people seeking out exactly that kind of physical contact that is painful for me; because i notice that i come from species that enjoys the mechanics of sexual reproduction; because i know the fiery pain of "friendly" touch. I know that prosopagnosia -- not recognizing faces -- is impairment, because i look around me and understand that not recognizing  a face is almost always a moral failing or a moral judgment.</blockquote>
 +
 +<blockquote>And yet... the barriers are not so clear, not so easily addressed as some writers seem to believe, and it is not as clear as we might think how we should re-envision our society to welcome, to value, to enable all people to full membership.
 +</blockquote>
 +
  
 **"Don't mourn for us" by Jim Sinclair from the book "Loud hands/ autistic people speaking"** **"Don't mourn for us" by Jim Sinclair from the book "Loud hands/ autistic people speaking"**
  
-<blockquote>Is it always correct to view differences between the behaviour of autistics and NT's as "symptoms" of some "disorder" in autistic people? Is it necessarily helpful to respond to such differences by trying to teach autistic people to emulate NT social behaviours so they can "fir in" with NT culture? What alternatives might there be for addressing social difficulties between autistic and NT people?</blockquote>+<blockquote>You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. that's the hardest thing to deal with, isn't it? The only thing is, it isn't true. 
 + 
 +Look again: You try to relate as a parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. Ant the child doesn't respond in any way you can recognise as being part of that system. 
 + 
 +That does not mean the child is incapable of relating al all. It only means you're assuming shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't responds in the way you expect, and many well find the whole interaction confusing and unpleasant. 
 + 
 +It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You are going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to level more basic than you've probably thought about before, to translate, and check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your familiar territory, of knowing you're in charge, and let your child teach you a little of her language; guide you a little way into his world. And the outcome, if you succeed, still will not be a normal parent-child relationship.>... 
 + 
 +<Yes, that takes more work than relating to non-autistic person. But it can be done -- unless non-autistic  people are far more limited than we are in their capacity to relate.</blockquote> 
 + 
 +<blockquote>You didn't lose your child to autism. You lost a child because the child you waited for never came to existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you. 
 + 
 +This is what i think autism societies should be about: not mourning for what never was, but exploring of what is. We need you. We need help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes there is tragedy that comes with autism: not because of what we are, but because of things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it,  though, get mad about it -- and then do something about it. 
 +</blockquote> 
 + 
 +<blockquote>Take a look at you autistic child sometime, and take a moment  to tell yourself who that child is not. Think to your self: "This is not my child that i expected and planned for. This is not the child i waited for through all those months of pregnancy and all those hours of labor. This  is not the child i made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do -- away from autistic child -- and start learning to let go.  
 + 
 +After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child i expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But i know it's a child, stranded in an alien world, without parents of its own kind to care for it. And because this alien child happened to drop into my life, that job is mine if i want it."</blockquote> 
 + 
 + 
 +  
 +<blockquote>Is it always correct to view differences between the behaviour of autistics and NT's as "symptoms" of some "disorder" in autistic people? Is it necessarily helpful to respond to such differences by trying to teach autistic people to emulate NT social behaviours so they can "fit in" with NT culture? What alternatives might there be for addressing social difficulties between autistic and NT people?</blockquote>
  
 <blockquote>...typical autism conferences, run by and for NT parents and professionals, do not tend to be very good places for autistic people to connect meaningfully with each other. There's simply too much going on --too many people, too much movement, too much noise, often fluorescent lights, and above all, the overwhelming onslaught of speakers and articles and exhibits all stressing that there's something terribly //wrong// with us, that we're a horribly defective type of human, and that our very existence is a source of never-ending grief for our families.</blockquote> <blockquote>...typical autism conferences, run by and for NT parents and professionals, do not tend to be very good places for autistic people to connect meaningfully with each other. There's simply too much going on --too many people, too much movement, too much noise, often fluorescent lights, and above all, the overwhelming onslaught of speakers and articles and exhibits all stressing that there's something terribly //wrong// with us, that we're a horribly defective type of human, and that our very existence is a source of never-ending grief for our families.</blockquote>
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 The first year, other than a workshop introducing concepts of self-advocacy to non-autistic parents, all sessions were presented by non-autistic people. I think this decision was an instance of backlash against the "self-narrating zoo exhibit" phenomenon -- the perversive use of autistic people  at conferences as resources to be used  for benefit of parents, and as source of raw data the meaning of which was to be determined by NT's. ("Give us the facts, we will take care of philosophy.") This time at //our// conference we invited non-autistic presenters to provide information for the benefit of autistic people. At subsequent Autreats 50% or more of the presenters have been autistic people. Topics have included disability politics, practical issues in autistic people's lives, and social/interpersonal issues.</blockquote> The first year, other than a workshop introducing concepts of self-advocacy to non-autistic parents, all sessions were presented by non-autistic people. I think this decision was an instance of backlash against the "self-narrating zoo exhibit" phenomenon -- the perversive use of autistic people  at conferences as resources to be used  for benefit of parents, and as source of raw data the meaning of which was to be determined by NT's. ("Give us the facts, we will take care of philosophy.") This time at //our// conference we invited non-autistic presenters to provide information for the benefit of autistic people. At subsequent Autreats 50% or more of the presenters have been autistic people. Topics have included disability politics, practical issues in autistic people's lives, and social/interpersonal issues.</blockquote>
  
-<blockquote>We do not expect you to "act normal" or to behave like a neurotypical person at Autreat. It is perfectly acceptable at Autreat to rock, stim, echo, perseverate, and engage in other "autistic" behaviours. The only behaviours that are not acceptable are actions that infringe on the rights of the others: by violating their personal boundaries or their property boundaries, or by preventing them from participating in Autreat activities, or by causing undue distress through physical, verbal, or sensory assoult. (Autreat orientation materials)</blockquote>+<blockquote>We do not expect you to "act normal" or to behave like a neurotypical person at Autreat. It is perfectly acceptable at Autreat to rock, stim, echo, perseverate, and engage in other "autistic" behaviours. The only behaviours that are not acceptable are actions that infringe on the rights of the others: by violating their personal boundaries or their property boundaries, or by preventing them from participating in Autreat activities, or by causing undue distress through physical, verbal, or sensory assault. (Autreat orientation materials)</blockquote> 
 + 
 +<blockquote>*Many autistic people need to know ahead of time what they will encounter and what will be expected of them. It's important to have an opportunity for people to ask questions. 
 + 
 +The detailed rules for ANI-L, and the Autreat orientation information, grew out of both a desire to avoid reoccurrence of past negative experiences, and out of the common need for autistic people to have clear structure in order to feel comfortable. Most ANI members had this need for structure and clear explanations of boundaries and expectations. 
 + 
 +*While many autistic people do have an immediate positive reaction to being in autistic space, occasionally someone finds the sudden absence of NT social expectations so disorienting that it results in a kind of "explosive decompression". Usually people who have this reaction are people who have been particularly strongly indoctrinated into passing for NT, to the extent that when the NT social pressures are gone, and they don't have to wear their "NT masks" anymore, they no longer know what to do  or even who they are. 
 + 
 +*Sometimes as autistic people begin to understand autism as their natural way of being, they become angry about the things that have been done to them by people trying to make them more "normal", or they experience grief reaction over the thins they've lost through not being allowed to develop self-understanding and self-acceptance earlier. 
 + 
 +*In rejecting intolerant NT prejudices that define NT characteristics as "good" and autistic characteristics as "bad", some autistic people react with anti-NT prejudice and start defining all autistic characteristics and autistic people as "good", and NT characteristics and people as "bad"
 + 
 +*Autistic immersion experiences, both at Autreat and in the smaller gatherings of friends, are often followed by some degree of sadness, disorientation, and even depression upon returning to NT world. 
 +</blockquote> 
  
  
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