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- Message-ID: <AUTISM%92123121535920@SJUVM.STJOHNS.EDU>
- Newsgroups: bit.listserv.autism
- Date: Thu, 31 Dec 1992 18:40:52 CST
- Sender: SJU Autism and Developmental Disablities List
- <AUTISM@SJUVM.BITNET>
- From: Jim Sinclair <GOLEM@UKANVM.BITNET>
- Subject: Re: Information about abuse
- In-Reply-To: Message of Wed, 30 Dec 1992 10:00:57 EST from <LISAS@PUCC>
- Lines: 112
-
- Lisa,
-
- Don't misunderstand me--I DO think your concern is valid, I share it, and
- I've expressed it to Donna myself. I can't speak for Donna, though. It
- may be that she actually does believe child abuse had beneficial effects
- for her. All I can say is that even if she believes this for herself, it
- certainly shouldn't be generalized to other autistic people. I guess I
- just don't see that those few remarks in that one book are going to make
- much difference, considering how widespread the problem is and how the
- dynamics usually work. The pattern Donna describes is that of a parent
- who probably didn't really want the child in the first place, saw the
- child's autistic characteristics as nothing more than a personal affront
- to her, and had little or no interest in understanding the condition and
- helping her child. I don't imagine many other parents like her are likely
- to read the book and decide to copy her example. ("Hey, why don't I start
- drinking heavily, become an alcoholic, and ruin my own life? Then I can
- abuse my kid more without even having to plan it, and maybe it will help
- my child as much as it helped Donna." Doesn't sound very realistic.) And
- I really don't imagine those particular dynamics being adopted by parents
- who are sincerely concerned with helping their children. There are some
- things that a person with an intact soul simply isn't capable of doing.
-
- >I'm not implying that everyone who reads Donna's book will decide that they
- >should be more abusive. Certainly, it didn't make me feel like we should start
- >beating up on Sam! But I still feel concerned that some parents out there,
- >who feel like they've tried everything to reach their children, will shrug
- >there shoulders and say, 'ok, being loving hasn't reached him, lets beat the
- >"$#%@" out of him the next time he .....'
-
- That happens all the time anyway, and will continue to happen, with or
- without Donna's book, unless there are profound changes in the way people
- view not only autism, but the power structure of parent-child relationships.
- If any of the published first-hand accounts of autism is going to make
- child abuse look like an acceptable option, I think it's the Barrons' book.
- Judy Barron comes across as a much more sympathetic figure than Donna's
- mother: She wanted her child very much, persevered in seeking the reason
- for his bizarre behavior even when she herself was coming under attack for
- it, and did everything she could to help him. And when nothing else had
- any effect on him, she beat the "$#%@" out of him. She doesn't leave it
- to the reader to make that interpretation; she readily acknowledges that
- she was abusive toward him, that she realized at the time she was being
- abusive, and that she desperately wanted help to bring herself as well as
- her son under control. And then as an adult, Sean says that there wasn't
- anything wrong with it, that she "had" to do it. Why would he justify
- his own abuse? I can't speak for Sean any more than I can speak for Donna--
- I've never had any contact with Sean at all--but I do know it's a very
- common thing for victims of abuse to minimize their experiences, often
- with the rationale, "I deserved it." This would certainly be consistent
- with Sean's terrible self-concept as a child (most likely a result of the
- abuse) and his adult perception of autism as something "bad" that he has
- to overcome or conceal.
-
- >What other kinds of therapies do you think are inherently abusive to autistic
- >children (or at least some)?
-
- See my reply earlier today to Ray's message: anything that oversteps the
- boundaries of the child's fundamental human rights. Anything that causes
- pain or degradation as an end in itself (as opposed to an unavoidable
- consequence of a procedure directed toward some other end), or anything
- that causes incidental pain or degradation out of proportion to the
- expected benefit. The most obvious examples where those issues come up are
- behavioral therapies that include aversive consequences. But I think in
- many instances, aversives are used cautiously and both parents and therapists
- are sensitive to the possibility of abuse. Abuse still occurs, but that's
- not the ONLY context where therapy abuse can occur. Some more pernicious
- examples are those like holding therapy, in which something that would be
- relatively benign if done to most children, and even if done to some
- autistic children, is damaging to a particular autistic child because that
- child is especially sensitive in some way. Temple Grandin uses the word
- "torture" to describe the use of painful sensory stimulation as a form of
- discipline. In her case a governess used to pop paper bags, making a loud
- noise, in order to control Temple's behavior. For most children this
- would probably be a harmless way of getting the child's attention, but for
- a child with auditory hypersensitivity it is indeed torture. Yet Temple
- speaks approvingly of the "chin-holding" technique as a way to maintain
- the child's attention during interaction. Maybe it helped Temple, maybe
- it helps a lot of autistic children who have relatively severe attention
- deficit problems but are able to tolerate the tactile contact, but this is
- one of the things that would be disastrous for children with tactile
- problems like mine and Donna's. An analogy I've used before is that a
- non-autistic child might be distractible and have trouble maintaining a
- focus on an interpersonal contact, and the parent or teacher might find
- that grasping the child by the testicles and holding firmly for the
- duration of the interaction will get the child's attention very effectively.
- That doesn't make it an acceptable treatment strategy. Using sensory
- stimulation to modify behavior can easily become abusive if the child's
- individual sensory problems and abnormal responses aren't taken into
- careful consideration. And I think any form of "psychotherapy" based on
- a psychogenic model of autism is inherently abusive, for the same reason
- that classical psychoanalytic psychotherapy is inherently abusive for
- incest victims.
-
- >I must claim ignorance again. I don't know who Matt Israel is or where/what
- >his facility was. Jim, could you enlighten us? (Or me, if this is well
- >known to everyone.)
-
- I'll try to find some published references with the gruesome details.
- In brief: "aversive therapy" taken to heinous extremes. One state shut
- down the facility for grossly unacceptable practices (and if you know
- anything about how hard it is to get a state government to take action
- against a substandard facility, that should give you an idea of how bad
- it was), so he moved it to another state. Throughout all the controversy,
- the staunchest defenders were parents of autistic people in the facility,
- who were convinced that this was their children's last hope of salvation.
- We keep hearing that of all the disabilities a child can have, autism is
- the most tragic, the most pervasively incapacitating, the most frightening
- to deal with. That fear non-autistic people have of people who are so
- pervasively different from them has justified treatment of autistic people
- that would never have been considered tolerable for any group of people
- recognized as fully human.
-
- JS
-