Case history

[Guest guest]

Hi all:

This is from a parent who feels the experience their family had with

their child might be helpful to others...

Ellen

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To the moderator. Please post anonymously.

I'd like to start a thread, possibly leading to a reference file, of

cases of injuries or other harmful consequences

of surreptitious perserverations of autistic children. Because of

our experience, I think these can be especially frustrating and

disheartening because of the guilt and regret that comes with

the " how could I have missed that " moment. In our case, if I had

only heard or read about the particular danger, I may have realized

what was happening before it became so serious and surgical repair

was necessary. Of course, after discovery, a internet medical search

found relevant case reports; but no one can know what's in the entire

medical database, and you don't know what to look for, if you've

never heard of it. If my description in an IPADD file is someday

read by one person who acts sooner and thereby avoids the

difficulties of hospitalization and surgery on their autistic child,

I could see some good come of this.

I see this as anologous to the " what to look for " references relating

to child or elder abuse, but relating to the stim's and

perserverations of autism. Now, necessarily this may involve some

unpleasant or uncomfortable subjects as the reason for hiding the

behaviors may well be that they relate to toileting, sexual behavior,

etc. Therefore, I propose a case study format, such as the

following, sent to the moderators for anonymous posting. The

language should be factual and non-judgmental, and as explicit as

necessary to ensure clarity without being vulgar should it involve a

delicate subject. We love our children enough to deal with whatever

may be causing them injury.

Defining statement (so the collected file can be easily searched):

Perserverative or a compulsive schedule of bowel movements can cause

rectal prolapse.

Case history:

My son had been independently toileting for years, much to our relief

after a late, drawn-out toilet training. So if there was a little

messiness from time to time and insistence on BMing on every bathroom

visit, we put up with it for the greater good of not stressing him,

causing regression, or any other negative consequences. But over

time it became a problem that the underside of the toilet seat was

always soiled and he just wasn't getting clean. If for any reason he

had an urgent BM, e.g. diarrhea or a long car trip, his pants would

be extensively soiled, yet no quantity of BM deposited. Questioning

and lecturing only lead to more stress (my son is not verbal enough

to answer a " why " query). He resisted any observation, but after

years of independence, that seemed perfectly normal.. Finally in

frustration, I intentionally walked in to catch him in mid-BM. He

tried to stop and appeared to be trying to push the BM back inside

with the toilet paper in his hand. Since I thought he was making the

usual mess on the toilet seat, I quickly pushed him forward,

intending to stop the mess and re-teach wiping. But I immediately

saw a significant rectal prolapse (anyone who grew up on a farm has

seen these in hogs and cattle after birthing; it's the rectum everted

through the anus by abdomenal contraction pressure and looks like a

thick pink or purple tube). These are not immediately dangerous,

but if it's your child, it's more than a little frightening.

Ultimately, and perhaps partly because of the delay in discovering

this, surgical repair was necessary. If my description in an IPADD

file is someday read by one person who acts sooner and thereby avoids

the difficulties of hospitalization and surgery on their autistic

child, I will be in some small way be relieved of some of the guilt.