Newsgroups: bit.listserv.autism
Date:         Thu, 31 Dec 1992 12:33:56 CST
              <AUTISM@SJUVM.BITNET>
From:         Jim Sinclair <GOLEM@UKANVM.BITNET>
Subject:      Re: Information about abuse

On Tue, 29 Dec 1992 11:57:52 EST <RJKOPP@SUVM> said:
>   Often therapy has been very difficult for my daughter (of course this is
>going back to age 1 to 2 when she was incorrectly diagnosed and had many
>physical limitations, at 9 months old she could not sit unsupported, could
>not roll over back to front or vice versa, could not crawl and certainly
>could not talk).  We went to a therapy center where my daughter began to
>receive physical therapy, these were excrutiatingly painful for my daughter
>and us, we all left in tears almost every time.  However she did learn to
>do most of these things even though they were extremely hard for her.
>Some therapies never have seemed to produce much such as occupational,
>although I'm not sure how much they are getting down to fine motor, often
>it seems more like re-inforcement of gross motor.  Once my daughter was
>able to sit and walk etc, the  therapies actually became something she liked
>and were fun to her and still are.

This kind of thing is always a judgment call.  You have to weigh the
degree of suffering caused by the therapy against the likelihood of
success, and the degree of suffering that will be avoided if the therapy
is successful.  In this case, it sounds like you went to well-qualified
therapists who prescribed a course of action that did lead to your
daughter's gaining skills that significantly improved her capacity for
self-direction and independence.

>   As for hold therapy tell me if what I am talking about is the same thing
>or not.
>   When my daughter was an infant, she cried most of the time.  If we picked
>her up it often seemed to get worse.  Sometimes holding her was no problem,
>but quite often if she was upset about something picking her up and holding
>her offered little comfort in fact it seemed like it irritated her more.
>We really didn't know what to do about it and felt that since our touch seemed
>to bother her we should let her be but try to stay nearby so she would know
>we were there.  Finally after discussing this with people for about 6 months
>or a year and not getting advise someone said that you just have to hold them
>until they get over it, even if it takes hours.  Little by little we did this
>and it did seem to help and eventually little by little it seemed that holding
>would comfort a little bit more each time, although this took an extremely long
>time building up.  Often times during these sessions her crying would seem to
>get strong to the point where we wondered if there was real damage done to
>cause her to scream to the point where she seemed to loose control of it.

Yes, that's exactly what I'm talking about.  As a formal "therapy" the
forced holding may be prescribed a certain amount of time each day.  There
may be times when parents need to force touch on a child against the child's
will in order to protect the child's health and safety.  A child needs to
have her diaper changed, for example, or to be bathed, or to be vaccinated
against dangerous diseases, and for purposes like these I think any
responsible parent would insist on acting on his/her adult understanding
of what the child needs, even if the child objects to being touched,
gotten wet, stuck with needles, etc.  But with those purposes, the touch
is only incidental to some other purpose the necessity of which is clearly
established, and the procedure can be completed as quickly as possible so
the child can be released from the aversive contact.  Touching just for
the sake of touching should NEVER be forced.  It does not fulfill any
need of the child's to hold her against her will.  It doesn't teach her
to be "comforted" by touch; at most, it teaches her to be passive and
unresisting if that's the only way to get the holding to stop.  It teaches
her that she has no power to control what happens to her body, who touches
her, how, or for how long.  One consequence of this is that it sets her up
to be a victim of sexual abuse.  Even aside from the issue of what it
places her at risk for later, I say the forced touching itself is a form of
rape to a child who doesn't want it and whose nervous system isn't equipped
to handle it.  It violates the most basic boundary the child has between
self and outside.  If, as her brain and nervous system mature, she does
develop the capacity to benefit from human touch, that capacity will
already be damaged even before she's had a chance to discover it on her
own: what should be a freely shared gift of love and trust perverted into
an expression of dominance and control.

>but how does someone decide that any difficult therapy
>is turning into abuse and needs to be stopped.  If the child is not driven
>to some extent, will they have the power to overcome what they need, to
>achieve the things they need, such as walking, and being comforted.  For
>us this was always a very difficult issue and kept us awake and caused a
>few arguments.

There are things parents have a right to decide for their children, and
things no one has the right to decide for any other person.  Within
reasonable limits, parents are responsible for facilitating things like
motor skills.  Where are the limits?  I can't give a precise map, but I'd
say that if the pain is temporary and the likelihood is high that
there will be significant benefit to the child, and the child, if capable
of understanding, receives an appropriate explanation of why this is being
done, then it's probably legitimate.  If the pain is severe and prolonged,
such that the child is spending a considerable portion of her life
experiencing avoidable suffering, and the likelihood of success is low or
the degree of improvement is likely to be minimal, then you have to ask
whether it's worth it.  I know people with spinal cord injuries, for
instance, who have quit taking these fancy high-tech electrical stimulation
therapies because even if they realize the greatest benefit currently
possible from the therapy, they'll still have significant mobility
impairment.  They feel they're getting more out of their lives going
about their business in wheelchairs than sinking large amounts of their
time, energy, and resources in something that MAY, at best, allow them to
spend their limited non-therapy hours shuffling around without wheelchairs
and falling down a lot.  This seems to me to be a reasonable decision of
adults who have intimate knowledge of the condition in question.  Therefore,
when I see parents of mobility impaired children filling up the children's
waking hours with nonstop excruciating therapy for only minimal gain, and
insisting that they'll never stop, they'll do whatever it takes, they won't
be satisfied with anything else but that the children WILL walk someday,
I think there's a good chance they've crossed over the line into both
physical and emotional abuse.  In addition to the unjustified physical
pain the children are experiencing, they're also being taught that their
value as people is diminished by their physical limitations, and that
nothing else they may want to spend their lives doing has any meaning as
long as they can't walk.

The boundaries for the things no one has the right to decide for anyone
else are much more clear.  ALL feelings are well within those boundaries.
Parents have no business trying to demand that children experience feelings
such as love, trust, comfort, etc.  The very idea is preposterous!  Those
concepts lose all meaning if they're forced instead of offered.  And non-
utilitarian touching is also within the boundaries of people's absolute
right to self-determination.

JS
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