son deteriorating

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Hi. It's been months since I've been here. Things are not going well. My son has always been extremely challenging - aggressive, moody, rude, sensory issues, disobedient. He's been in counseling for several years, has been with a psychiatrist and on meds since he was 5 (he's 13 now) and has had three big autism evaluations and was said to not be on the spectrum all three times (one at age 2, two at age 12.) Change of insurance, his new psychiatrist thinks he is on the spectrum, so I've requested another eval.

His school is not helping much. He's on an IEP but he's not a behavior problem with anybody but family. He doesn't get any work done in academic classes but does well in electives. He's in a great mood when we're doing stuff he wants to do, but when it's time to do chores or schoolwork or shower/brush teeth, he won't, and he gets mad. He's had the police called on him recently by his school when they heard how he threw a spoon at me. The last few days he's pushed me and my mom when we wanted to turn off the TV.

He's off his meds now so that we can hopefully get an accurate diagnosis and appropriate help, and of course his behavior is worse, but mainly in degree - he's been like this since he was a toddler. For all of his life he only does school work, chores or hygiene when it's tied to getting computer time at the end of a successful day. (We tried more frequent rewards, token systems, everything, and they all had issues. Working toward and end of the day goal was best.)

But several times lately he's gone weeks without doing any of the requirements because he loses his desire to get on his computer. Right now he's starting week two of not being allowed any video/electronics due to not doing his stuff. He just flat out says no. I've tried other activities - do your stuff and then we'll go to a movie, etc, but he still won't. He's in a fine mood in general, so I don't think it's like a depression, but when it comes up, he has a meltdown or just says no, he's not going to do it and doesn't care.

The stuff isn't extensive. Here's the list: Daily, feed chickens (his chosen farm animal to care for), feed his two cats, do a couple lessons with me, attend an elective (drama, fencing, parkour, woodshop), read (he loves to read thank goodness). Three times per week he has tutoring. Once per week I'll set aside the whole day and try to get him to take a shower. On a regular day, if I said he can't go to class if he didn't shower, he would say OK. And a couple times per week I try to force the teeth issue also. Both tasks are encouraged by giving computer time if he will do it.

So I think this is pretty much identical to my first post here from a year ago. His counselor and teachers work with me on reinforcement schedules, so it's not just me and a lack of expertise on my part. What do you do if you have a 13 year old who won't do anything? His autism type symptoms are showing more especially now that he's non medicated. He walks thru the house and just picks up whatever he sees and bangs it against the floor or the wall or a cabinet or throws it, he grabs a nerf gun and shoots at a glass lamp (nerf guns are now taken away), picks up a butter knife and jams it into a counter... His counselor says he should be in a residential placement. He's amazingly perfect, sweet, obedient, compassionate, insightful, helpful with other people. At the place he does fencing and parkour they love him and he leads classes there for them and they always remark on what a good person he is. It remains to be seen how much his behavior might change in these other environments once he's had more sessions off his meds.

But what do I do with him? Do I just decide to totally abandon my expectations? I could probably get him to do his small amount of work by only allowing him to eat veggies and not eat any other stuff unless he does something. Is that even halfway acceptable? (Of course I'd have to only have veggies in the house, as there is no stopping him from eating whatever he can get his hands on, even if we say no don't eat that, he'll eat it anyway.) It can't be good for him to just sit around and eat whatever he wants and do no chores and break stuff and make a mess and fart and burp and scream nonstop when he's mad and do no schoolwork and flat out tell us no when we ask for help with something around the house. He's got capabilities - he was identified as gifted, and he has done amazing stuff around here in the rare moments when he's motivated. He's installed landscaping materials, made walkways with rocks, set up targets for knife throwing and archery, put together all the furniture in his room, created his own board games with rules and goals and a board and pieces... But he won't do what we ask him to. Is there something I'm missing that would make it easier for me to just live with it? Is this something parents of kids on the spectrum deal with? Maybe my expectations are too high.

thanks!

I also think it's really weird that he's been on psychiatric meds for eight years without being diagnosed with anything.

I've been motoring along for the last year thinking it's not autism, but we changed insurance and got a new psychiatrist and she says it is. Plus, now that he's off the meds he's acting differently. The psychiatrist says the meds could have been confusing the diagnosis.

And he's had a diagnosis since age 2. At 2 it was global dyspraxia, apraxia of speech and sensory integration disorder. Then at 5 he got bi-polar and ADHD added. Then around 7 the new psychiatrist changed bi-polar to mood disorder.

Wow 0223, this journey sounds like it has been very confusing, frustrating, and challenging for you and your son. I hope you get some answers and the right diagnosis very soon.

Thank you Fitzi. I guess what I'm aiming for here is to ask what you all do when your kids just won't do anything. I try to think of it like when he was a toddler - I would encourage, and praise, and model, and some stuff he could do and wanted to do and some stuff he couldn't. I might say "yay, you cleaned up your toys, now we can read a book" but it wasn't like he had a few things that if he didn't do them, he was grounded, so to speak, until he did. As he got older he started getting more expectations, but if you read my list above, you can see he doesn't have much, simply because it often takes a week to even get one of each done.

So I can only assume that for those of you who have kids who you've known to be on the spectrum for a while, and who often don't do things that even kids say 5 years younger could easily be doing, I guess you just get used to that? That's just what life is like? Stupid question, I guess, because what choice do you have. How much on a day to day basis do you do to try to encourage some output? What if they just won't brush teeth, not for any reward you can offer or for any privilege they might earn back? For weeks? Does that happen to any of you? Do any of your kids just flat out refuse to do things like take out garbage, clean their cat's litter box, remove their garbage from the car, help you feed the pets? How do you get them to do it if they won't? Do you just give up?

And let's say it's been a week of them not doing anything you've asked, do you try to, I guess, make their lives boring in the hopes it'll cause them to change? Like, well, we were going to go to the beach this weekend but you've refused to do each chore I've asked you to do and you did no schoolwork, so we're not going? How long would you continue with that boring life? Because we don't do that to toddlers - we still do enrichment and fun things with them even though they are basically incapable of doing much of anything around the house...

So I guess I mean how do you decide how much of a "punishment phase" he should be in versus you just deciding well, I'm raising a huge toddler. I was tentatively planning a winter Disneyland trip, but with him pushing us and telling us he wants us to die a slow painful death and telling us "no, I don't have to, and you can't make me" when we ask him to take out the garbage, well, I'm not feeling much like going to Disneyland with him, although he'd be in the best mood ever there since he loves novelty and fun things and going places and doing things and is much much much worse when he's bored. So if your 13 year old son is pushing you and throwing things at you, no matter if he's on the autism spectrum or not, do you just give up your plans for Disneyland?

I guess I feel like the choices are: he's on the spectrum, so yes, we'll go to Disneyland and I won't limit his food to vegetables only until he gets his act together, or no, he's not on the spectrum, so he gets nothing good until he shapes up. Maybe that's a false dichotomy.

I'm very familiar with the idea that kids who can behave, will behave, and the book No Fighting, No Biting, No Screaming, and the Dr. Ross Greene and collaborative problem solving method, but my son admits in therapy that he is lazy and doesn't want to do anything and that if I treat him the way those methods describe, with the idea that he would be behaving better if he wasn't in whatever emotional state he's in or lacking whatever developmental skills needed, he'd never do anything I ask. It seems his problem really is being lazy and oppositional, and that he really likes to be controlling and mean when he gets mad. And using those methods on kids like that seems like letting them get away with it. But then there's the fact that he'll go weeks without being allowed to use his computer, handheld game, phone, or watch his preferred tv shows, because he won't do some chores/schoolwork/shower. Aren't reinforcers supposed to work on kids who are simply lazy and oppositional? I try to think about if he was an adult, would he suck it up and go to work and earn money or would he just let himself be homeless? I don't know the answer to that.

From all my reading on this forum a year ago I feel like most of you have a pretty clear understanding that your kids' shortcomings are struggles your kid is working on as best he can. Do any of you think your kid is just a lazy meanie?

I can sum up my entire super long post with one phrase: military school or loving accommodations?
Ugh.

There are apparently people who work well with the baptism by fire method of being able to do things when they have to and will say that they were helped by military school type structure. I do not relate to this personally, because when I am overwhelmed I can't function. My child is similar to me in that regard. I cannot speak for your child, obviously, but from your description it does not sound like he is the kind of person who would respond well to that type of situation.

I wish I had a solution, but I don't. My son is 9, and I believe he is compliant when he can be. I just do not always understand all of the reasons for the "can'ts" although I have figured out some of them. We are still working on the Greene method, but tend to get stuck on getting good communication from him, so we are still in the "being geniuses phase." Punishments mostly do not work for us, b/c they are not the issue.

Your son may say he is lazy, but I am wondering if that is what he really means or if he cannot articulate why he can't do things. Hyperfocusing on a fun thing, and being unable to transition is not lazy in a strict sense though it may appear so. My son also has issues with tedious things, so I am wondering if you created games out of some of the chores, if that might help. Also, he may just be saying he is lazy figuring he has to say something, anything, to just make the conversation stop. He may just hope if he says he lazy that that will end the inquisition. I am not saying it is an inquisition, but he may perceive it that way. I think all kids hate that kind of thing, and aspies tend to hate it even more. It is hard to explain it is necessary to find out what the issues are to solve them.

I wish I had more advice for you. My son has a fear of germs, so brushing his teeth/ washing hands is not an issue here. Although I still brush his teeth for him. He has a much harder time when I ask him to clean his room and I think it's because he just can't organize the steps that would require together without getting overwhelmed. So, I try and give him very specific tasks like "put these Legos into this box" and don't give him the next task until that is done.

I know that my son also can become controlling when he is feeling overwhelmed. And, he feels overwhelmed a lot. Given your description, it sounds like your son is really suffering and trying to find an outlet or a feeling of having power, and I'm guessing he feels powerless most of the time. It sounds like you and he have been failed by the healthcare and educational systems in your area for quite awhile and have been trying to function without the right tools or knowledge. Plus, whether or not his behavior began as a desperate grab for power for a boy who feels out of control, it is probably also now a pattern that is hard to break.

Where I live, psychiatrists also do not generally give an ASD diagnosis. You have to go to specialists, like a neuro psych, in order to get the right testing or a diagnosis that the DOE will accept. There are some places that offer free testing here. You may need to travel in order to sort out what is going on with your son, and he may have more than one diagnosis. Then, from there, he needs the right kind of therapy. But, I wish you and he could get some relief sooner.

Thanks everybody.

[/quote]
The question is, if you do back off of all demands, and let him do what he wants (even if that is nothing), does your home life get better, or does the violence escalate to the point you are not safe in your own home? Does he step up and start taking care of himself when there's no longer anyone telling him what he has to do? If not, maybe he does need to be in an in-patient setting.[/quote]

No, he does not. Even when he has no demands, he doesn't do what he needs to do. For instance I told him I'm no longer worrying about his teeth, in conjunction with his counselor telling him also that I'm going to stop being involved in that decision, so it's been a week and a half, and he has a big hole in a molar that scares him (dentist appointment coming up) but he still won't brush them. He's in a good mood some of the time but he still screams and throws stuff over things that come up even with no demands placed, such as wanting a different type of food (available are cheese, veggies, apples, grapes, salami, pickles, leftover thanksgiving stuff, broccoli, salad, milk, nuts, all stuff he's happily eaten at other times) or over getting mad that we kept our gaze on him for too long during a conversation or that we took our gaze away too soon, that I didn't let go of something quickly enough when handing it to him... (YOU LET GO OF YOUR END THE SECOND MY END GOES INTO MY HAND, YOU DO NOT KEEP A HOLD OF YOUR END FOR ONE SECOND TOO LONG, DO YOU HEAR ME!)

In between meltdowns he's super sweet, kind to animals, he's learning about energy healing on his own time (back when he was allowed on the computer) so he likes to give us massages and use essential oils and his energy work to make us feel better... But then he loses it over something and screams at us for long periods of time and throws things. I could keep him more engaged and happy by doing things like "let's go to the store and buy more essential oils" and then that would use up a couple hours of him reading about them, shopping for them, trying them out. But I'm unsure about that - I sort of feel like that's spoiling him. If he was a "normal" kid who was being bratty you wouldn't take him on a special shopping trip. But I think for an autistic kid, you might do something like that as an enrichment activity sort of thing regardless of how he's been behaving.

That's where I get confused about my role. Should I stick to providing a pretty boring life for another couple weeks or however long it might take for him to actually shower, do a couple chores and do some schoolwork? That's the only way he's ever finally done those things in the past, is to say he finally wants to be allowed to play a video game again, or if I had said something like well I really hoped we could go see a movie this weekend, but you haven't done x y and z for two weeks despite me asking you to, so we're not going. Several times, definitely not every time, he's been motivated by that.

Have you heard of Pathological demand avoidance?

It sounds like that might be more the issue at hand. Perhaps you could read these pages and see if it seems familiar?

http://en.wikipedia.org/wiki/Pathologic ... _avoidance

http://www.autism.org.uk/about-autism/r ... drome.aspx

If that is the issue, then perhaps reading books or other information about the condition (available on second page of the second link) might be more useful?

Also, if it makes you feel any better, I wouldn't worry too much about the cavities. I have had 20(ish) in my life. Mostly due to a combination of being forced to wear braces and predominately British genetics. They don't take that long to fix, and with modern dentistry you don't even notice them.

I am just a tad boggled that they would be diagnosing a child of 5 years old with bipolar.
That seems a bit ridiculous.

The first thing I want to suggest is that you change your home environment to suit your son's need to touch and move and fiddle. Why do you even HAVE a glass lamp? Make you home a safe place for his sensory needs like touching and fiddling and pacing and moving. Pack up all the nice stuff so you don't have to even think about it anymore. Like childproofing but going even further. These actions of his are self-calming and serve a purpose. Once he has developed other tools you can consider bringing some things back into the environment but, for now, I would simplify both your lives by simply having home be a place he really can move as he is drawn to. I can't even begin to tell you how much difference it made for us when we took that one simple step (and you'll be happy to know I am actually thinking we could now own a free standing lamp again).

The second thing I want to suggest, if you have not already done this, is to allow him to pick his chores each week for the upcoming week. He may function better if he has that sense of control. After all, you've mentioned a lot of pretty complicated things he has helped with, so it isn't like he is totally adverse to helping home be a positive place. He just has trouble following a list and time requirements.

Third, have you pulled up our threads on the sensory issues related to tooth brushing? This needs to be a non-negotiable, for his health, but there ARE ways to make it a less unpleasant experience. There can be huge sensory issues involved with the task and issues are not uncommon; we have talked about them often. Figuring out what works best for your son will be a process or trail and error, but worth investing in.

Thirteen is a rough age to first be taking some of these steps and tackling some of these issues, but since you can't go backwards, you don't have much choice. Get his world molded to his needs and see what happens.

Thanks all. I will read that pathological avoidance stuff. Sounds very interesting.

The glass lamps are on the ceiling. Need an electrician type person to remove them. He's had the sensory integration diagnosis since he was age 2 so we're very familiar with that. He's had a ton of occupational therapy and is not required to sit still. He has had a few weeks-long episodes over the years of being all over the place banging stuff into stuff and picking stuff up and throwing it. These episodes coincide with particularly oppositional times. This is the first one since in a year and a half ish. He also does it in stores and in other people's houses but not as much. He got mad at me when we were in line at a restaurant yesterday and swung around angrily and knocked into some stuff and into a person. So when I bring it up here I don't bring it up to indicate I'm worried about my lamps. I bring it up because it's info about him and his struggle. I do know that if he doesn't snap out of it soon I'll have to re-child-proof my house. I've already made some easy changes.

As for chores - long complicated list, really? He chose them, and they are:

Daily: feed and water chickens and cats. 20 minutes.

A few times per week: clean cat box, pick up the dishes and garbage he's left around the house (not sure that even counts as a chore, but it won't be done until I take him around and guide him) 20 minutes maybe 4 times per week.

Once per week each: empty dishwasher, take out garbage, and some weeks we can get him to do one other thing, like rake leaves or help us with some farm project. So like 20 more minutes three times, maybe two.

That's it for chores. He's homeschooled and is only needing to do an hour or so of academics most days, none on the days he has two extracurricular activities, up to 2 hours on the days the hired tutor comes. He does read most days for 20 minutes to an hour. So it's not like his list of chores are supposed to be done after being away at school for 7 hours, but even if they were, seriously, that's a tiny list of chores. And they are what he chose. We've brought it up in counseling and at home from time to time over the years if he'd want different ones and he said no, he wants those, he just doesn't want to do them.

I'm definitely not diagnosis shopping. I have only changed psychiatrists when we had to when our insurance changed and we couldn't stay with the existing one. I've never changed due to not liking a diagnosis or any other reason other than the current one not taking our new insurance. I don't care one way or the other except that if he is on the spectrum, there are free services, and more services, available to him. And I realize psychiatrists don't diagnose autism. He has two psychiatrists at the moment and both want another evaluation by Alta since this will be the first evaluation that's been done with him not medicated.

As for the 5 year old bi polar diagnosis, the next psychiatrist we had, which was I think when he was around 7, said he felt that's what he had but that he was leery of calling it that, so he changed it to a general mood disorder. And that's how it's been ever since, mood disorder and ADHD. Severely emotionally disturbed according to the therapist but I know she also does not necessarily diagnose and I think SED is more of a legal term. My dad has bi polar as well.