Very Low Functioning ASD Teen w/New Disturbing Behaviors

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Good God, I'm tired. First time poster here, so please bear with me folks. I hate to be the typical "I'm desperate and need help" newbie, but I think I'm mainly just looking for someone who's in the same boat as me....or even in the same ocean. Here's some background on my son: 19 years old, very low-functioning ASD. Completely non-verbal, extreme difficulty with communication (no sign language, no electronic communicative devices, no picture books, schedules..etc), cannot read or write. Wears diapers due to encopresis, but has been able, since the age of 2, to take himself to the toilet to urinate. He has been in the same class for the past couple of years and has a set of angels for teachers. He has another set of angels for after school caregivers, and none of this has changed.

Here are the recent issues. Over the last 6 weeks, he has suddenly started urinating himself, both during waking hours and while sleeping. He has also started chronically masturbating (not in public, thank God), injuring himself, pulling his diaper apart, and seems generally miserable. Obviously, I panicked and thought that someone was hurting him, bullying him, or doing something terrible to him at school, but my husband and I have such a tight and close line of communication with the teachers, and after much investigation, we concluded that is not the case. Prior to this behavior he has been on both Risperdal and Abilify to control aggression, and they both seemed to do the trick. I have never encountered behavior like this with my son and it's killing me that I cannot help him. His neuro prescribed another med (Imiprimaine) and we're in the beginning stages if titrating that, but the sudden onset of all of these behaviors is consuming me. I know that frequently there are secondary diagonses that accompany ASD, and many of them rear their ugly heads in the late teens, but I'm having such a difficult time helping him deal with these emotions. He can't communicate any of this to me and if it's hurting ME this much, I can only imagine how badly it's eating away at HIM. I'm at the end of my rope. I feel like I'm dead in the water.

Just one thought - what have you or other people said about what his life will be like as an adult? I heard of a nonverbal autistic person who learnt to type to communicate as an adult, who said she started acting out in her late teens because she was afraid of being institutionalized. I have no idea if that's the case with your son, but maybe you could try talking to him about your plans for how he'll be cared for in adulthood.

I don't think that's a likely possibility, but it's one I would never have thought of if I hadn't read that one person's account.

I wonder if someone on the general board might have some ideas. Always tricky interacting as a parent with the membership on the general board, but that is where you are more likely to hear from some of our members most likely to actually have experiences closer to your son's. Not all our members wander in here because on this board they are a little less free to be themselves; this is a place for parents, and many NT's post here, etc. On the general board they don't have that restriction. Which can be helpful or absolutely unhelpful but, in your situation, may be worth the risk?

I'm sorry I'm not swimming in your ocean. At least, not currently (never know with regression). Not because I want to swim in your ocean, but because I'd really like to be able to give you what you are looking for ... and I can't.

I have ASD and people with ASD's dont regress that far, that fast for no reason. I really dont think it is internal. You need to comb his enviroment since that started, with a fine toothed comb. I really really hate to say this but urinating one's self and sudden onset masterbation is a sign of sexual abuse in children. It doesnt have to be an adult...it can be another student just as easliy. I really regressed suddenly and badly after I was sexually abused by 2 boys a few years older than me. I started bedwetting every night and didn't want to be human anymore. I was constantly acting like some sort of animal. The psychiatrist thought I had been sexually abused, but they asked me if some adult touched me in my private areas. I said no. They never did ask if anouther kid did. and I didnt offer up the information until I was in my 30's.
A friend of mine as also has a moderate functioning autie son who was sexually abused and he started wetting the bed and masterbating as well as grabbing his younger brother's genitals. He also depersonalized and acted like a T-rex suddenly after the series of events.
I hate to even think something like that may have happened, but it really does sound that way.

Jojo

Just to rule out the most simple possible answer: has anyone checked for UTI or yeast infection, or other medical reason for genital and bladder discomfort? If he wears diapers, both are fairly likely, and could cause symptoms like you describe (assuming the masturbating is actually a reaction to itching.)

I'm not saying this is the case - just remembered someone posting this in response to a similar situation with a much younger child; wouldn't hurt to rule it out.

Thank you so much for each of the responses, all of them quite valid. I've been keeping a very close eye on him, and from what I can tell lately, I think I've put on finger part of the issue. It seems to me that he may be confusing urinating with orgasm when masturbating. And I'll be damned if I can find ANY information on this at all online. I've given a really good shot at explaining the difference to him, but at this point, I just don't know how much has sunk in. His mood has improved over the last few days, and if I can keep him busy and out of his room, the instances of daytime wetting and self-touching significantly decrease. The decline was frightening and I'm still seeing a depressive state, and I'm not trying to fool myself, but keeping him distracted may help.

On the other hand, I am continuing to be vigilant with the communication between all parties involved with him, talking to him, talking with doctors, and whatever else I can do. I just hate the feeling of helplessness as a parent...even though he's 19, he's always going to be my child and I will always feel to protect him.