Parenting my adult Aspie - I can't take it anymore

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Don't forget that the OP wrote,

This is a really, really hard situation to pontificate about across a board like this. (I don't mean to select just your comment out in this, as Ticker and Triangular_trees have both said very definite things of similar nature. I'm just using your comment as a foil for comments of my own.) I don't think it helps the situation to select out only some of what this mother has said about her situation and emphasize just that part of it. There is a whole picture here and even taking everything she has said about it we only know the tiniest bit of the reality.

I have a profoundly autistic daughter living with us, 23 years old. She is quite a bit stronger than my wife. She has grand mal seizures and because of that I am the one that has to bathe her, for example. She isn't particularly violent, but there are times when she applies her strength to hurt my wife, intentionally. Well, as intentionally as someone with roughly a 5 year old's mental outlook can be... which isn't all that clear-minded about it. It's usually only for a minute or less. But it hurts. Sometimes, it bruises my wife. And partly because of the fact that she needs so much of our time (a person and half), my earning capacity is also reduced and I must work at home.

Our situation is, at times, perhaps almost as urgent as the OPs -- not quite, I'll admit, but frankly there are times when we just don't know (especially my wife) if we can cope with her, live anything even resembling our own life, and help our other two children, as well. (One is also autistic, but higher functioning and far less work.)

We have (quite recently, in fact) discussed the idea of declaring crisis and forcing the state to take her out of our hands. But I can definitely say that if we did so, my wife would no longer be the same person and probably, to a lesser degree perhaps, neither would I. We love her a lot, she has a weird and enjoyable sense of humor at times, draws really interesting pictures I have to say are as oddly recognizable as "where's waldo" pictures but like nothing anyone has seen before, and it would literally destroy us, emotionally, to lose her to a system that pays 50 cents per hour more than minimum wage for caregivers that rarely stay longer than a few months in their jobs, where abuse is common and well documented (just in the news, a few weeks ago, in fact, was a new report on this subject), where the mean lifespan is 25 years less than average not because of problems due to their disability but instead due to __acquired__ problems under state care (another report came out in our state just two weeks ago documenting this and yet another governor's report in 2007 for the state of Minnesota said exactly the same thing about that state, as well.) We would just be shells of ourselves. Nothing left. Just getting by until we died. And in no way could we dare see her again. It would kill us.

All this is a very, very individual thing. I've known parents of children just like my daughter, people whose families I've known over the years, perfectly capable of sending their children away for their own convenience into a system that is not, and cannot be, very loving. Without any remorse or 2nd thoughts. Yes, we've talked with them over the years and there is no doubt in my own mind about how little they seem to care one way or another. It's scary and kind of eerie to me to actually know parents like that. But they exist. Others I know are quite the opposite. Perhaps overboard. I can't tell you how many times I've had a parent of another profoundly autistic child just blithely say to me that when the time comes, they are just going to take their child out into the garage with them and turn on the car rather than place them in a system they perceive exists for their child if they died and their child was forced into the state's system. So many times, though, that I don't even flinch about it anymore. (Look up 'murder suicide autism' on google sometime.)

I really, really feel a lot of emotions over this OP's post. Nothing so clear as many here seem to feel. I'm conflicted where many seem to have well-defined and unalterable beliefs with so little to go on. It would surprise me, except that I've seen it before.

To the OP, I wish I had something clear to say. I feel your love, your pain, your conflicts, and the difficulties you have pointed out. This has been a tremendous and difficult three years, if nothing else. Leaving a marriage of more than a quarter century, dealing with personal medical problems like yours, coping with all this... I wish there were some simple answer. But probably, whatever it is, you need some help from people who can work directly with your family and know something about the possible avenues in your area that will help present you with options. You need more options to choose from, I think. Not hard, die-cast opinions. Perhaps someone may see an avenue you haven't considered.

I wish there were communities around you where you could go with your son for a while, while you got some supports in the meantime and lived among people who could pull some of the load off while you figure things out, without necessarily being too invasive in your lives. Nothing permanent, but just a place to go for half a year or so, among people who would be like family. Not in North America, though, so far as I'm aware. Elsewhere, perhaps. Some places in Europe, I've been told. Not around here.

I can tell you are both frustrated and yet care a lot about your son. Hopefully, you may find some good connections in your area. Or, perhaps, find a way to communicate to your son who you say, "emotionally .. is at the level of a junior high or high schooler right now." That can be a tough emotional age to cope with, though. From here, I can only wish you the best, though.

Best wishes,
Jon

Our kids didn't ask to be born. We made the choice and it is our job to stick by our kids and be their most powerful advocates. Kids live what they learn.

I took care of a child who was born addicted to every drug immaginable. His Aunt and Uncle tried to get custody of him since birth but alas the state kept giving him back to his parents. So early intervention was lost. The straw that broke the camels back was that they showed up one day, house open and little boy age 3 in dirty diapers drooling and whole face in a rash, he was just sitting there. They took him straight to the hospital...oh..."Kidnapped him".....yeah right. Eventually they got total complete custody of him, they loved him and cared for him. But a child like him sometimes has no concept of right and wrong, he became very dangerous to his younger cousins, I got him and you see these very damamged children, and you get at your wits end with what to do with them. But he was loved and doted on by the staff. His family that did adopt him had to place him in residentail care, but they were at the house constantly, they bought him clothes,and toys they took him to Dr. and therapy appointments, they talked to staff, they saw his room, they took him on pass. But reality....this was a very dangerous little boy. He couldn't be kept home, and even at the grop home he had his own room close to the office and the area where overnight was, and he was cloesly watched. Now my mother in law, an invalid, she now has 24/7 in home care.....cost my father in law 7000.00 a month. FINALLY the state has intervened, she now has in home care paid for by the state. But we are there constantly. I do the laundary as my father in law dosn't want his washer and dryer used....(another story). the big thing is, families can be vigilant in making sure their loved ones are safe in these places. Show up, take them on passes, visit often, check their rooms,their bedding,their clothes,their hygiene stuff,their schools,their therapist. My Father in law, even with everyones help, almost died taking care of my mother in law, because we just weren't enough. Convelescent hospitals did not monitor my mother in law well enough to suit us, and my father in law wanted her home. But with in home care, we are all involved and we all have a say, and we are all ON THE SAME PAGE. I looked up asperger support group in Escondido Calif, and found one, I also found and organization through the San Diego Autism Society that is available to help out a friend of mine, with....life skills, housing,money management,therapy. I was suprised to find them. Check out your local Autism Society and see what they have. Maybe they can help.

Before I jump into what's happened the last 3 days, I'd like to point out that you jumped to this conclusion on your own, and it makes me angry - that he refused to take his ADHD meds. Psychostimulants in someone who has autism can cause violent outbursts. I had the holes in the walls and door and the fist through the window to prove it. He was also put on clonidine a long time ago, and spent four days in ICU being taken off his meds because he went into shock from the clonidine. He's been on approximately 30 different meds to get his ADHD under control. As I said, it's unmedicated, but not for lack of trying. How do you read into that that he refused his meds??

Also, he has not hit me in years. He is yelling a lot at me, but he hasn't touched me.

Last edited by trixiesirisheyes on 05 Feb 2008, 1:30 am, edited 1 time in total.

Oh F.Y.I on the child I mentioned, he was 12 when I met him, so his Aunt and Uncle tried for years to keep him at home.

My daughter and her husband have a tiny little house they're renting, and they have a terrible marriage. Out of the frying pan, into the fire.

I'll explain soon what's happened since Saturday evening.

Of course he's rebelling. Emotionally, he's in high school! But he's smart enough to know he's 21 and legally an adult.

He has not hit me for many years.

I apologize for angering you, Trixie. However, in your very first post, you said he had been refusing to take a number of medications, and you have referred to "severe unmedicated ADHD" at least twice (the second time saying it was "not for lack of trying"); therefore, it is not unreasonable to conclude that ADHD medications are among those not being taken.

I think you should reserve your anger for those who deserve it (for instance, your local social-services organizations - have they attempted to at least connect you with respite-care services, so you can have a few hours a week out from under?), rather than becoming angry with those of us who are trying, in our own limited and unskilled ways, to help.

If your ex husband will take him for a while, I would tell your son to go live with his dad. It doesn't matter if he's opposed to living with dad. It wouldn't be his choice. If your son is not making any kind of progress, then you might not be the best care taker for him.

My son can't stand his father. But, if it turns out one day that my HFA son is half a foot taller than me and 100 lbs heavier and he's giving me more grief than I can stand, I'm calling his dad and telling him to come pick up our son.

If you're in the United States, you could also direct your son to Jobs Corp.

trixiesirisheyes,
am not sure about the rest,but if it's a sensory reason for not liking washing,get him a packet of baby wipes and see if he will tolerate them.
Am have a major problem with water on skin,and use boots baby wipes for washing,they are better than nothing.

Set a deadline several months from now for him to move out, and tell him about it. He'll probably be very anxious in response, so tell him that you're going to do everything you can to make sure he's ready. Try your best to teach him useful life skills (how to drive, how to do laundry, the social expectation of good hygeine, how to manage money, etc.)

If he listens, great! If he doesn't... well, that's unfortunate, but that's his choice.

Either way, follow through. Come the deadline, kick him out. From that point on, his affairs are his problem, not yours.

Some people just have to learn things the hard way. It has nothing to do with Aspergers, and everything to do with being too pigheaded and too coddled to even see the need to learn. Why even bother putting out the effort, when you've always got someone there to do everything for you?

Well, it might soon become a moot point because his mother will probably die at an early age if she doesn't get a break. Nobody, especially someone so ill, should have to put up with being treated like a human punching bag.

There is a lot of things wrong with this picture. I'm a 19 year old Aspie, and I am not having nearly as many issues as your son. I keep my hygenine up (got to get girls somehow, right?), try to normally socialize, (not perfect but getting better), I can drive, (don't have a car yet, but that's my moms decesion and I am in college, and I will get one next summer), and I have held down normal jobs. I have a 3.0 GPA after my first semester in college. Now I'm not trying to show off, but I'm trying to say that you are enabling your son. My mom helps me out with money, although a lot of my spending money comes from two websites I sold back in my senior year of highschool. I'm also planning to get federal work study due to our situation, as well as a job at Chick-fil-a in the summer at my college's town. Does your son get Social Security or vocational rehab funds? If so that could help him, and if worst comes to worse kick him out. I know it's hard, but if your son is endangering your health then he has to go. He is 21, you are under no legal obligation to help him in anyway- and he can prob find some help in a group home type situation. Is he going to college or anything?

If only more parents understood this. I think I tried making the same point about kids not asking to be born, and someone said "How can kids ask if they want to be born?" Of course, that's typical of some of the flak I get here, when I offer advice someone doesn't want to hear. Then they just say "You're not a parent!" as if my insights aren't beneficial cause I haven't had a child. I know more than parents here about their childrens' lives, because I'm at the same age as most of their kids. If not, I do know a lot about stuff for younger kids, cause I still enjoy those things myself. It seems in the USA that means someone is horribly childish and regressed, in Japan it's not considered horribly maladaptive for a grown women to like the same cute things she did from when she was a child.

So I like to feel I do have insights to thinks parents may not have thought of. Between getting hassled for not being a parent here at times, as well as being told "Your not a parent!" when I try to explain my Hyperacusis to parents in real life, and that I am letting them know to help them because I cannot tolerate sudden loud noises, or extremely high pitched noises. It sometimes gets to the point concerning that, where I feel like why should I bother. Perhaps maybe cause unlike some parents, I care more about their children, where as they seem to care about their convenience first.

Holy zombie thread, Batman! I don't think the OP posts here anymore, so it's probably not going to help posting advice on this thread.