Biting despair

Janey developed a new habit about a month ago.  She bites her upper arms when she is angry---mostly the right one, but now sometimes the left too.  It's a horrifying habit.  Her arms are constantly red or bruised, she hurts herself to the point where she is crying for a band-aid, and there seems to be no way on earth to stop her.  

She started it at school during a tough week.  Tony and I saw her badly bruised arm and just didn't know what was up.  I never thought anyone at school was hurting her, because I know they wouldn't, but I thought she might have smashed up against something at school.  I could tell the bruise wasn't from being grabbed or pulled by another kid, because it was only on one side of her arm.  Finally, after a few days over a weekend trying hard to figure it out, Janey got mad and did the biting at home.  It was a little bit of a relief to know what was causing the bruises, but that was quickly followed by a complete lack of ways to prevent it.

For a few weeks, Janey was biting less and we hoped the behavior was just ending.  However, this past week has been very rough.  We've had the sleeping problems, and Janey has seemed endlessly irritable.  And the biting is back---big time.  Now it seems to be the first thing she does when we say no about anything.  She asks to go get ice cream at 2 in the morning, we say no, it's the middle of the night, and she bites herself.  We've tried everything we can think of.  We've held her hands, which works only if we can get to her in time, we've tried putting on an ace bandage so she can't bite as well---she takes it right off.  I bought her hand core biting toys---actually dog toys, because I don't think the average Chewelry or whatever it's called works for SERIOUS biters like Janey.  She just bites them up.  The dog pretzel will hold up to her, and she does like biting it, but it doesn't replace the arm biting.  Somethings seems to compel her to hurt herself, and it's killing me.

Today, when talking to her teachers about strategies we could try, they told me she has also started to bite them now and then.  This is something she's done once in a while at home too.  It's usually done when she is hugging.  She puts her mouth against my chest and then suddenly seems to have an impulse to bite down.  It's hugely painful.  I come down very hard on this---screaming at her as loudly as I can, to startle her and let her know it's completely unacceptable, and this seems to have decreased her doing it at home to once in a long, long while.  But all bets are off right now, with this current trend.  

I worry about biting so much.  I know if she starts biting the kids in her class, that could be something that the school would get pressure to remove her for.  They wouldn't want to---the wonderful aide in Janey's room actually said if they would give Janey a one-on-one aide for the summer, she would be that aide, after having been bitten even, but in talking to the special ed team leader, who does Janey's IEPs, I found out it would be very hard to get that aide at this point.  The leader said that the summer school staff would be well trained to handle biting (in the summer, Janey is with all autistic kids).  I hope that is the case.  She is going to speak to the ABA supervisor for more ideas.  Mr. Ken, Janey's ABA therapist, has been very on top of this too, and called me yesterday to talk about strategies.  Everyone is working on this, but in the end, no-one can really keep Janey from biting.  We have to make her want to stop, and I just don't know how.

In my new resolve to assume Janey understands what is said to her, I've talked to her a lot about the biting.  I've told her I understand she gets angry or scared feelings, and she knows most of the time she shouldn't bite other people, but that she absolutely shouldn't bite herself either---that biting hurts her, that it makes things worse, that it scares me, that it will make her have a painful place on her arm for a long time, that she needs to stop, that we will do whatever we can to help her stop.  She doesn't act like she is listening, but I hope she is.

I've been thinking about the autism acceptance movement.  I believe in a lot of the parts of it.  I do accept Janey, but there is no way on earth I can accept her hurting herself.  I can't see autism as a positive when it leads to that kind of horror.  I wonder how that fits into that philosophy.  I'm struggling to see how in the world acceptance can stop behaviors like this.  I guess if I could explain to her that I accept her anger and frustration, but not the biting, that would be one way, and I hope I am explaining that to her.  But she has almost zero impulse control.  Even if somehow she is understanding that, when the urge to bite hits, I am pretty sure she isn't thinking about anything but her anger and how she wants to bite herself to deal with it.

I have to admit this has me in a bit of despair.  If anyone has dealt with this, and/or has ideas, I'd love to hear them.  If you don't, thanks for being there just to listen.