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!

First, I want to say I'm sorry I don't have an easy answer for you! My daughter is 17 and we've gone through a similar situation which continues to be up and down. Medication (specifically for her, anti-depressants and trazodone) have helped. But I think hormones have something to do with this too. She too is very smart. School has been very difficult since high school started as she has never wanted to do homework (had decreased amount written into her IEP in middle school). This year we are doing a cyber school which has been working better (straight A's first marking period & enjoyed much of it -- found it interesting and not a waste of time...) in general, however this week she has gotten behind and depressed... Who recommended all meds be stopped for the eval? I understand you want it to be accurate but I can't imagine how hard this is and wonder if he was weaned off his meds (I'm sure you've done this under the doctor's recommendation but just in case, I thought I should bring it up as going "cold turkey" with some meds can even cause seizures). And how long until the eval? (Hopefully not off his meds very long if they have been helpful). In my daughter's case, she held herself together much of the time when she was in "public" (at school, etc.) and then isolated a lot or sometimes fell apart or became very controlling at home. But now that she is mostly at home, she is much calmer and happier in general (though today she is unable to see that...a bad day). She also went through a phase of being very controlling and refusing to do things for computer time any longer. Fortunately that eventually passed. Here's the other thing: I know it feels like having the correct diagnosis is the key to everything. But often it isn't. The key is finding techniques, therapists, psychiatrist, vitamins, herbs, medication, activities, people, pets, interests, games, websites, family activities that work with him specifically. He isn't his diagnosis. He is a person that some things will help him be more successful in his life and some things will not... Teen years are difficult in general and sometimes it is difficult to tease out what is due to being on the spectrum, or other mental health issues, or just being a teen with raging hormones, or being a teen and wanting to be a bit independent (i.e. not just listening to the parents and their rules but making his own choices about how he spends his time). All I can say is you are not in this alone! And it will get better... and sometimes it will get worse. I've have come to believe that living day by day and no longer having a "plan" for my daughter's life (college, career, etc.) but just going with the flow is the best way for me to manage my feelings about the situation. Every day is a new adventure -- sometimes good, sometimes bad -- but it is made up of moments. I try to focus on the good ones and hold those in my mind.

Thank you Jessiemom for the reply. I only care about the diagnosis because I can't afford any services and if he's actually diagnosed as on the spectrum then the regional center will provide some services. And I also care because his school thinks he's just a bad kid - if he had an autism diagnosis they might rethink that.

We did wean him off the meds gradually and under a doctor's supervision. He was on an atypical anti-psychotic (Abilify for the last year, Risperidal for 7 years prior) and Prozac for the whole 8 years. He can't be on the anti-psychotic anymore because he developed a movement disorder - severe akathisia. He is not all that different off meds - he screams a bit more, and argues a bit more, and refuses to do chores and schoolwork a bit more, but he had several periods while medicated that he would refuse to do anything at all for weeks at a time. So it's not a huge issue having him off all of them since it's only maybe 20% worse than when he was on them. He was always on a very low dose of the anti-psychotic because it was always making him borderline type II diabetic, so I kept the dose as low as possible.

His psychiatrist wants to try him on lamictal after the evals are done. The regional center told me they'd see him in around six weeks, and he's in the middle of a school chance from homeschooling to the regular public school so they will need a few weeks to get to know him. So it'll be a while.

As for him being a teen, he doesn't want to be independent at all. He is afraid to be alone and he still wants to cuddle with me or his grandma on the couch all day, wants to sleep with one of us, won't spend any time alone in his room even with his chosen pets, won't go outside to feed dogs or chickens without somebody coming with him, is afraid of the dark, and only recently decided we don't need to help him wipe after going number two... He's very delayed in those sorts of developmental issues.

Focusing on the good moments is a really good thing to do.