SIBs

[peglem]

So, it occurred to me the other day that I've never heard of a child who had serious SIBs and aggression who got over it. Has anybody heard of serious self abusers who no longer do it? I'm talking about the autistic kind- not like teens who cut themselves. Has anybody found a solution to this (IMHO) worst of all autistic traits?

[LIZARD]

Thank God, this has never been a serious problem for Drew. On occasion, he'll still smack his upper arm with his fist in frustration, but beyond that, we don't see much anymore. That said, his worst was at about 3-4 yo, and he'd generally hit or head-butt. Things like biting were never an issue for us. I know; we're very lucky! :)


LIZARD :)

[lisa6wks]

Peglem,
I think that depends on what the SIB's are used for. If they are for sensory issues and the child has gotten to the point where they are actually getting some pleasure out of it, than I think unless you are able to find the right medication it becomes very hard to stop the SIB's. I just had a student like that for two years and no matter how much other sensory stim we gave him he would still self stim this way.

If it is from a lack of communication and frustration, I really truly think that it can be manages with a combo of communication methods and transition strategies. I am not trying to imply that this is easy, but I have seen some progress in this area with some of my students. I just think it is incredibly hard for some of our kids to deal with the world when they don't know what is coming at them, they have few or no choices and they can't communicate with us. Of course there will always be frustration, but I think if their kettles weren't always at the boiling point from other issues, normal frustration wouldn't push them over the edge the way it does now.

Lisa

[peglem]

But, have you ever seen a headbanger, handbiter recover, or get over those behaviors? Have you ever even heard of that happening?

I'm very unsure of the "theories" of SIBs. Maybe for some kids, it IS self stim or endorphin inducing or frustration or whatever. But, the really bad stuff that Allie does- it just doesn't seem to fit any of those categories. There are times when she smacks her hand on her head out of frustration (I think-hate to assume) or does something mild to get my attention. But the serious stuff that puts all these holes in the walls and really injures herself...seems more like demonic possession-so out of control and fighting it the whole time. I use demonic possession as the best descriptor I can find. Its like there is some invisible internal trigger.

I'm not really asking how to deal with it so much as looking for how possible it is to extinguish it. Does it happen?

[lisa6wks]

Yes, I have seen it get much better although like anything else, it may never go completely away. There has to be something making your daughter do that, the problem is we just don't know what it is. Have you ever tried systematically tracking it? Writing down exactly what happened before she did it. Where she was, who was there, what time it was, had she just eaten, gone to the bathroom, had she been told something? Be as specific as possible. Then write down exactly what happened after she did it. How did you react, how do others react? What did she do next?

Of course there is always the possibility that this is internally based and she is in some sort of pain. If that is the case the above won't help. And then it would be time for the doctors, but I would try the above and if you could get a skilled behavior managment professional to come in and do that for you, it would be so much the better. I think sometimes when we know our kids too well we discount some factors because they are such an everyday part of our life.

Behavior is always a form of communication, especially for non verbal kids. I am sure this must just be breaking your heart.

Lisa

[lisa6wks]

The other thing I have had to do if the child is really hurting themselves is to use a mechanical restraint like a helmet or soft splints if the child is a hand biter. This is not something I like to do, but here have been times when it has been effective especially if the child does not like them and will stop the behavior so that you do not put them on him/her.

For example, I had a child who would pull out his trache tube to get attention. NOT a safe practice by any means! Once he had done it on the bus and his nurse was unable to get it back in right away and he stopped breathing for a length of time. He had learned this at home and at school was doing it every time he had a task to do as a means of task avoidance. Eventually I put the soft splints on his arm so that he could do his work but not pull out the tube. Soon he stopped doing it since he didn't like the splints.

If your child is seriously hurting him/herself with these SIB's and until you can ferret out why it is happening, you might want to look into some type of mechanical restraint such as a helmet to keep her from hurting herself.

Lisa

[peglem]

I guess I'm just feeling like we've tried just about everything. Helmets make it worse, because she'll find a corner to smash her face and splints- she gets them off very quickly and its so hard to get them on in the first place. She is very strong, especially with adrenaline. Lots of behavioral techniques, which sometimes help, but so many times they get better for no reason or worse for no reason (that we can see). For so long the emphasis has been on reducing anxiety. But, I've been thinking that the anxiety is not the trigger so much as a manifestation of something internal that terrifies her. We're seeing a slight improvement on Lamictal, but could be a coincidence.

[lisa6wks]

If the Lamictal is helping, could there be any chance that she is having migraines? I know mine have been partially helped by being on anti seizure medication.

Lisa

[peglem]

Could be. We got the referral to the neurologist way back last September because she was soooo miserable (and loving company) and seemed to me like she was in pain. Light bothered her so badly she couldn't even look at the screen on her aug. comm device. Horrible, horrible time. The first appointment we could get was FEBRUARY!!!! By February she was a lot better- just occaisional problems...but we did all the testing and the neuro said what I was describing (actually, lately she's been doing stuff that really looks more like seizures than headaches) sounded like either migraines (she's a headache expert) or seizures. At any rate...NO PROBLEMS ALL DAY TODAY!!! I'm gonna celebrate that...may completely turn around tomorrow, but I can treasure today:)

[lisa6wks]

Would it be worth treating them as if they were migraines, meaning, if the behaviors started, give her a pain killer and see if that helps at all? I have daily migraines and both my daughters started having them at 2 and still have them now that they are in their 20's. I was told that migraines are very common in children. Just an aside, my grandmother had migraines as well and I was told she used to beat her head against the wall when she had them.

Lisa

[peglem]

The problem with painkillers is they take awhile to work and my daughter's reaction to the pain is so drastic...We had been giving her different pain killers- we needed to get from september to february somehow. By the time it helped we were all pretty beat up- well mostly me and Allie.

This would have been years quicker I think, if there weren't all those theories about SIBs in autism, how horrible to be in such pain while people think you are having temper tantrums or self stimming to get an endorphin rush.

[lisa6wks]

I totally agree with you there. If the lamictal is helping but not enough then, will your doctor try another AED or change the dose and see if it helps at all? Also you said she has a communication device, have you had any luck with her telling you she is in pain? If you could consistently get her to do that whether she SIB's or not, and you had a high powered pain killer to give her, she might start to see the cause and effect of using the device instead of hurting herself. And I am sure you have already tried this, but there is also the process of trying to remove the triggers that cause the migraines, such as lack of sleep, dietary ( I can't eat too much sugar on an empty stomach) msg, etc. It's a lot of work, I don't envy you. Again I would probably keep some type of diary to see what helps and what doesn't.

Lisa