==== Autism Related Reading Notes ==== **"Critic of the Dawn" by Cal Montgomery **
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.
"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.
"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.
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.
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.
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.
**"Don't mourn for us" by Jim Sinclair from the book "Loud hands/ autistic people speaking"**
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.>...
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.
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."
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?
...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.
Any attempt by a group of disempowered people to challenge the status quo -- to dispute the presumption of their incompetence, to redefine them selfs 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 person 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. 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 prejudice and stereotypes the activists are seeking to overturn, and use those prejudice and stereotypes to claim that the activists are incapable of fully understanding their situation and knowing what is the 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. These strategies to undermine credibility are not new, nor are they limited to situations involving disability.
I believe all persons with Autism need the opportunity to become friends with other Autistic people. Without this contact we feel alien to this world. We feel lonely. Feeling like an alien is a slow death. It's sadness, self-hate, it's continuously striving to be someone we're not. It's waking up each day and functioning in falsehood. (French, 1993)
I looked around the room and, in keeping with our frequently shared experience of having always felt like aliens on Earth, i remarked that we could use the radio tower to send a message to the "mother ship", telling it that we were all together now and it could come retrieve us and take us home. But i'm glad there was no spaceship to come get us back then. We've found so many more of our people since that day, and there are still many more wishing and searching for a community to come home to. We've come a long way toward creating home for ourselfs right here on Earth.
Autreat 1996: Here people who could paint and draw equally shared experiences with those who can't hold a pencil or a brush. People who are very articulate equally shared experiences and understood those who could only jump or clap their hands or point to the letters on a letter boards or picture board to respond to a question.
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.
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)
*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.
**"Na de regen" by Eva De Groote**
Nur springt op en loopt naar het loofbos toe. Mensen komen hier niet, maar er is wel een hertenpad. Ze zorgt ervoor dat ze netjes het smalle pad volgt zonder dat ze op de boomscheuten trapt, of op de struikjes die groeien naast het hertenwegje. De knoestige eik die ze passeert moet volgens Jacques meer dan honderdvijftig jaar oud zijn. Ze legt even haar hand op zijn bast om hem begroeten. Dan rent ze verder langs het hertenpad, om uit te komen bij haar favoriete plaats in het bos. Net onder het pad staan twee bomen op een stukje aflopende helling die is afgezoomd met struiken. De bomen hebben er een dicht gebladerde, ze bieden beschutting tegen weer en wind. Onder de bomen is geen begroeiing, enkel een soort van poederige aarde, het is als een zacht zandig bedje. De herten slapen er, zo weet ze. Zelfs als het regent, blijven ze er droog. Ze springt van het pad af de holte in om zich nestelen tegen de boom zoals ze meestal doet. Wat is dat? Er flitst angst door haar borst. Er ligt iets harigs. Ze bekijkt het van wat dichterbij. Het is de poot van een konijn. Voorzichtig raapt ze de poot op van de plaats waar ze meestal gaat zitten. Hebben ze de poot daar voor haar achtergelaten? Ze glimlacht en aait zachtjes met haar ene hand over de poot terwijl ze met haar andere hand een dienschaaltje vormt. Ze kan het niet geloven, ze heeft een konijnenpoot gekregen. Het is een teken van verbondenheid met de dierenwereld.
**"Van een andere planeet" by Dominique Dumortier**
Mensen denken dat autisme aan de buitenkant zit. Dat je kunt zien. Maar dat is niet zo. Autisme is onzichtbaar. Het kan aanwezig zijn zonder dat het opvalt. Het zit aan de binnenkant.
De wereld draait niet om mij, zo wordt mij verteld. Ik moet aanpassen aan de wereld, want de wereld zal zich heus niet aan mij aanpassen. Als er nu een ding is waarvan ik me altijd bewust ben geweest, is het dat wel: ik val buiten de wereld, ik participeer niet aan deze wereld. Dat is precies het punt. Vanaf het moment dat ik 's ochtends mijn ogen open, probeer ik mij aan te passen, te doen zoals elk mens. Het liefst zou ik willen verdwijnen en opgenomen worden in de meerderheid. Wat haat ik het dat ik anders ben! Wat haat ik het dat ik niet onzichtbaar ben. Ik kan me niet aanpassen. Nu niet, morgen niet, niet de laatste dag van mij leven. Het verschil is er eb zal er altijd blijven. Het enige wat ik kan doen is het camoufleren en doen alsof het er niet is.Ik sloof me uit om me aan te passen en hoe meer ik me uitsloof, hoe beter het me lukt (weliswaar enkel uiterlijk) maar hoe meer ik uitgeput raak en me onaanvaard voel. Hoe meer ik mijn best doe, hoe groter en pijnlijker het contrast voor me wordt.
Ik heb enorme problemen met gevoelens. Ik voel veel, minstens evenveel als alle andere mensen (en wie weet zelfs nog meer). Ik ben dus gevoelig maar gevoelens veroorzaken ook veel problemen. Ik kan mijn gevoelens niet plaatsen. Ik voel vaak maar ik begrijp meestal niet waar die gevoelens vandaan komen en hoe ik ze zou kunnen benoemen. Blijheid en kwaadheid ken ik, maar dan enkel in hun primitieve vorm. Nuances kan ik niet plaatsen. Kwaad is altijd meer dan kwaad alleen, blij is altijd meer dan blij alleen en verdriet is altijd meer dan verdriet alleen. De ene keer is kwaad is anders dan de andere keer en blij anders dan blij en verdriet is anders dan verdriet. En dat kan ik niet vatten of benoemen. Ik kan meestal wel zeggen of gevoel positief is of negatief, hoewel ook dat soms moeilijk ligt.
Ik heb altijd het gevoel gehad dat mensen mijn anders-zijn niet appreciéren. Ze zullen mij wel nooit links laten liggen maar me echt aanvaarden doen ook niet. Ze vinden me raar en willen dat raar zijn niet zomaar aanvaarden. Ik ben anders en anders is anders. Bovendien kijken ze niet naar hoe ik anders ben. Ze kijken niet naar hoe ik dan wel ben. Ik ben enkel anders, verschillend.
De mensen dringen niet tot bij mij door. Ze komen naar me toe, maar niet tot bij mij. Er is altijd die afstand, altijd die muur waar ze niet voorbij komen. En ik kan het ook niet, want ik zit vast achter de muur. Ik raak daar niet weg. Ik zit gevangen in mijn eigen hoofd en raak er niet uit.>....
Soms zeggen ze mij dat ik net als anderen lijk. Maar dat is enkel de buitenkant. Vanbinnen in mijn hoofd ben ik E.T. Het probleem is nou net dat je onmogelijk bij me naar binnen kunt kijken.
**Gunilla Gerland**
Hoe dan ook , tegenwoordig ben ik in staat heel wat NT-speak ( neurotypisch spraakgebruik) te gebruiken en voel ik me ( en dit is paradoxaal) dichter bij NT- cultuur komen naar mate ik meer leer over de autistische. Ik heb in mij dit beeld van twee culturen (de autistische en de NT-cultuur) als twee tuinen met daartussen een hek. Sommige mensen kunnen all naar het hek toe wandelen en met de mensen van andere cultuur spreken, maar anderen zijn nog ver weg van het hek. Ik zie mezelf vaak zitten op het hek, soms zit er iemand naast me, maar dat is zeldzaam. Toch is er ruimte genoeg op het hek. Maar meer en meer mensen van beide culturen wandelen in de richting van het hek om met elkaar te spreken en dat vind ik prachtig.