Newsgroups: bit.listserv.autism
Date:         Thu, 31 Dec 1992 18:40:52 CST
              <AUTISM@SJUVM.BITNET>
From:         Jim Sinclair <GOLEM@UKANVM.BITNET>
Subject:      Re: Information about abuse

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
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