'Debarking' the Autistic

Nathan recently went through a period of the hardest handclapping I have ever seen or heard.  My husband (who builds audio equipment such as speakers and has some experience in this area) estimated it at at least 120dB.  It was explosive.  He clapped so hard he got calluses.  That then cracked open.  The more frustrated or angry he would get the longer and louder he would get.  When we were at home I would ask him to go to another room because I find the noise to be quite painful.  Once in the car with just me he began doing it.  The sound was excruciating to me in that closed space.  I tried holding his hands down and he looked daggers at me and snarled "Get your hands off me."  I was actually thrilled, although I told him that I would help him control his body until he could do it for himself. 

Luckily with another med adjustment (we're in the middle of an extended phase of this right now) that has mostly gone away.

One of the recent big stories in the autistic community was the story of a boy with autism and Tourette's who had vocalizations at 90dB up to 200 times a day.  After many behavioral treatments failed, he underwent surgery to split his vocal cord and stop his ability to scream.  He could still vocalize but not at the intensity before surgery.  It was reported to be fully reversible.

Autistics through out the community were outraged. 

Our story is not comparable because we could not cut Nathan's hands off.  The thought is abhorrent.  I suppose if we cut one hand off, it would be effective.  He would still have use of his (dominant, I am not so cruel as to force him to learn to use his non-dominant) hand.  That is sarcasm.  If you didn't realize.

But also Nathan's clapping had not gone on for years.  The month or so it did was wearing.  But I can start to imagine how wearing being exposed to noise conditions that would meet the OSHA cutoffs for work place hazards.  I also know that some stims are the impetus to other stims - a self-perpetuating action that can interfere with other activities.  Nathan has a scream he does in the back of his throat that sounds upset but he has told us makes him happy.  I have tried it and it is very alerting.  I'm pretty sure it releases some endorphins.

I tried the hand clapping also.  It hurt.  A lot.

I also know that that kind of screaming can cause vocal polyps which can require surgery.

I cannot imagine how much these people went through to arrive at the decision to do it.  How many behavior therapies.  How many meds.  How much agonizing over a decision like that.  I would have the luxury of being able to type the question to Nathan if that's what he would choose.  Because his voice is not always reliable, even in keyboarding, I would ask it many ways at many different times. 

I know that autistic bloggers see it as black and white.  An infringement on self-autonomy.  I also know that a drop of water is not painful.  But Chinese water torture could drive you crazy.

Like so many things, I don't think this is black and white.  I am pretty sure it falls way into the range of "you better have a god damn good reason and tried EVERYthing else."

What concerns me is that some parents or some doctor will not be willing to run down every avenue.  And will think that surgery is a great treatment for noise abatement.

I am glad that we don't have options like that.  I don't want an option like that.


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