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0223
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05 Jul 2013, 7:04 pm

Hi. My son is almost 12. High IQ, pretty high functioning in his favorite areas (legos, video games, reading), very bad at self direction, chores, self care, academic output... Some pretty extreme anger and aggression issues are very well managed on haldol and clonadine (as well as hearing voices and suicidal statements.) He's had an ADHD and bi-polar diagnosis for 7 years but was recently diagnosed with autism. With the new diagnosis, I'm unsure about how to discipline him.

I had a good discussion in the other board about things like house rules. But now I want to talk about major angry disobedient blow ups. He used to have them many many times per week - screaming that he will not do as I say, that I cannot make him obey me, that he gets to decide if his behavior is OK, not me, that I'm the worst parent ever, etc. Sometimes shoving up into my space with his chest, sometimes slamming doors, throwing things. I always tell him that his feelings are OK, but that his behavior is not OK. I don't mind if he says he's mad at me, I don't mind if he says things like "well I really wish I didn't have to do such and such" or whatever. If he just raises his voice but is relatively respectful with what he's saying, I just ask him to turn down the volume. But for anything else above that, he loses a privilege, typically no computer the next day (or that day, if it hasn't been computer time yet.)

But now that he has a diagnosis of autism, I wonder if I should give him a consequence for these sorts of things. It honestly does not seem to slow down the problems. It can sometimes stop him in mid blow up - as in, hey, if you continue screaming at me that you will not listen to me and that I don't have the right to tell you what to do and if you keep kicking my chair, you will lose computer tonight, lets instead try to have a calm conversation about what's bothering you, and that can sometimes help him get it together. But if it gets beyond that and he does actually lose the privilege, that usually causes an even bigger blow up. I have NEVER given in to the blow ups over losing a privilege so it's not like he's confused about whether or not it'll do him any good to freak out - it won't. But he does anyway, most of the time. So it seems as if there is actually less strife overall if I never give him a consequence.

For example. Last night we were out, in town, in the car. He just drank a bottle of water and we were headed home but he was still thirsty and wanted to go to a drive thru. I said no, we spent enough money on food at restaurants today and we are 7 minutes from home, you can have a drink there. And he totally lost it. Screamed at the top of his lungs and I do mean screamed over and over and over "GET ME A DRINK NOW!! !! !! !! !! LISTEN TO ME! YOU NEED TO DO WHAT I SAY! YOU NEED TO TAKE ME TO A DRIVE THRU NOW!" My husband asked him to not scream because it hurts our ears and he lost it even more, "YOU BUTT OUT OF THIS CONVERSATION, THIS DOES NOT INCLUDE YOU, YOU DON'T HAVE ANY RIGHT TO TALK TO ME RIGHT NOW, I WILL NOT LISTEN TO ANYTHING YOU SAY!" This continued for about 4 minutes along with him slamming himself around in the backseat. I gave the warning, he didn't stop, so I announced the consequence, and he lost it even more, and cried and screamed until we made it home, then cried and screamed at home for a while, and then was fine.

So. What do you all do in those situations? Later we talked, as we have in the past from time to time, about what the purpose is of consequences. I explained that I hope that he'll remember how much he disliked the consequences last time and that will help him modify his behavior next time. I emphasize that I'm not trying to control how he feels about things - he's got the right to be annoyed that I won't go to the drive thru and buy him a drink - but that it's his behavior that is what needs to change, because it's rude, hurtful, loud, potentially dangerous when we are driving, etc. I explain that I'm hoping to sort of replicate what things will be like for him when he grows up. If he acts like that with other people, he will lose friendships - I can't show him fully what that would be like because I'm always going to be his mother no matter how he acts, but other people might choose to not have him in their lives anymore, and bosses might fire him, stuff like that.

But he just says that the consequences don't work. He says he cannot think about them when he's freaking out - he is too consumed by the freak-out to think rationally. He says if he was able to stop himself, he would, and if he doesn't stop, that means he can't stop at that moment and therefore a consequence isn't going to help. And I think he's probably right - research has shown that punishments don't really work to reduce the frequency of the unwanted behaviors. But I feel like I'm doing him a disservice if I don't dole out some punishment "for his own good."

So maybe just a short discussion would suffice, when he's calm? He does have opportunities to earn privileges throughout the day, so there is positive reinforcement going on too. And there is just something about giving consequences to a kid with ADHD and bi-polar that feels different to me than giving consequences to a kid with autism. Maybe there shouldn't be any difference, I don't know. What do you guys do?



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05 Jul 2013, 7:44 pm

As he told you, once he gets to that point, he isn't in control. If he isn't in control, consequences don't matter.

The thing is, I highly doubt he wants to be in that state, either. So that is where you start, with a conversation about being in that state and how he feels about it, and if he would rather prevent it as well.

And then you get down to the hard work of identifying all the things that lead to the state, all the build up and triggers, and figure out protocols for mitigating the situation before it is no longer in his control.

Not all ASD kids can learn to recognize the build up in themselves, but having them do so is the goal, if possible. Otherwise, it will be your job.

There is an excellent description of the process going into a meltdown in the pdf book written by one of our adult members, free for download at ASDStuff.com.


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Last edited by DW_a_mom on 05 Jul 2013, 8:10 pm, edited 1 time in total.

DW_a_mom
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05 Jul 2013, 8:05 pm

I wanted to get the above posted before I wrote more. Here I'll talk a little about the history with my own son.

When he was little, he was drawn to crazy, busy places and things. He seemed to love it, to totally soak in the sensory experience. But I started to notice that these experiences were followed by fragile behavior and an increase in meltdowns. I started to limit them, and to schedule in sensory breaks, etc. So lesson number 1: just because someone enjoys something does not mean they can handle it or that it is good for them. Consider carefully what the patterns are, even with things your son loves doing.

Number 2: the trigger isn't always the real problem. It can be items that have built up over hours or even days.

Pay close attention to the patterns.

Lesson number 3: for many of our kids, a tell sign of stress is an increase in controlling and/or demanding behavior. The more out of control they feel their world - and their brain - is, the more they will try to seize control. This isn't a time to threaten or punish, because that accelerates the downward spiral. It is a time to redirect into a self-calming activity, like sitting in a quiet room reading. Or jumping on a trampoline. Something that the child will be comfortable choosing. I noticed a huge change with my son when I simply changed my wording from "go to time out" to "why don't you calm yourself down in your room for a few minutes." The thing I realized he needed was to feel he had some control over what was happening, some say in the matter, even if the net result is the same.

I also noticed his eyes change. It is when he is the most excited that he can handle the least. I see the overload in his eyes. That means time to slow down, let him be for a while, away from whatever is going on.

Slowly I taught my son to recognize these changes in himself and take responsibility for diverting himself into self-calming activities before he had reached a point of no return. A key part of transferring that responsibility, however, is that you promise to listen and adapt when he says he needs to have a break. Doesn't matter where you are or what you are doing, you honor the stated need. As he gets better at it, you transfer more responsibility for predicting, timing, holding off to more appropriate location, etc.

Once you've got enough pieces of the process taught and transferred, THEN you can have consequences. But, really, you don't need to: the meltdown IS a consequence. My son KNOWS it does him no favors in life, and he has always been extremely embarrassed by his meltdowns. There are many, many things he would have liked to have done that he choose not to out of fear of hitting a meltdown that might have to be witnessed by peers.

He can't stop every meltdown, even though he diverts most. He now shuts down instead of going off, somehow he taught himself that change. But if someone were to try to push him out of shutdown mode .... well, hopefully no one ever will. He usually disappears from people to make sure that won't happen.

Anyway. It is a long, slow process with many components, and probably one of the most important things you will work through with your child. Be patient, consistent, calm. This is something we worked on for years.

Good luck. Hopefully your son will be one of those who can learn to see the patterns in himself and control the process.


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05 Jul 2013, 8:43 pm

DW_a_mom wrote:
As he told you, once he gets to that point, he isn't in control. If he isn't in control, consequences don't matter.


Ok, I skimmed through this post so I only have the gist of the story .. and have to agree with this quote. I have a 12 year old as well and I'm currently looking into getting a Service Dog who works primarily with children/teens with Autism. This dog is said to help with these type of behaviours. Just an idea I'm looking into at the moment.



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05 Jul 2013, 9:44 pm

I might be able to help with this.
StabilizingAutism/unsolicited-advice
The mind knows where 'it lost control' and knows what triggers these things.
What it doesn't know is that it just needs to update this control program which is undoubtedly many years old and out of date.
The main 'outline' for the 'original' program was likely created when he was even preverbal.


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0223
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06 Jul 2013, 12:38 am

I like the mind knowing and needing to update... It's very very difficult with him to notice any triggers. Even our therapists have said this. He is extremely unpredictable. Sometimes he's quiet and calm and then wham. Other times there is a clear escalation. Last night for instance he was calm, loving the fireworks, seemingly having a great day, not too active, not too shut down. Totally took me by surprise. And him too.

We've been in months of therapy where he's been taught about coping skills - we have charts of his chosen coping skills hanging all around the house. But EVERY SINGLE TIME, whether early on when I first start to suspect all the way to in the moment of the melt down, he refuses to use a coping skill. Even mentioning it escalates the situation. I've tried simply pointing at the chart. I've tried "can I help you get going on one of these coping skills." I've tried "you need to do a coping skill now or you will lose a privilege. I have told him I'd give him extra points toward privileges for actually doing a coping skill (but have never actually done that as he's never actually used one.) When they are brought up, he gets super mad and just flat out refuses.

So I'm not arguing with the idea or saying it's impossible. It's just very hard. He is very oppositional. Some of the coping skills are really nice things, like watch a tv show, play with the dogs, sit with the chickens - things he totally loves. But when he is supposed to be doing one to help himself feel better and redirect impending situations, he flat out refuses. Even though in therapy he says it's a great idea.

So I like the idea of him needing a software update - more of a firmware update, maybe. ;-) And I think that by not giving him a consequence it will hopefully be more like I'm on his side, and maybe he will even wind up being calmer in the long run since he won't have to worry about what consequence he might be getting.

But it's so hard to envision. I teach horsemanship lessons at my ranch, and from time to time he'll run to the barn during a lesson super mad about something (grandma won't let him have a dish of ice cream or something like that) and he'll lose it in front of my clients, sometimes shove up into me with his chest, screaming, and I'll tell him he has to leave and we'll talk about it when I'm done working, but he refuses to leave and he stays out there yelling at me in front of my student. I'm not all that embarrassed - it is what it is - but I don't want to lose business over it, as it certainly rattles some of my students, who are already busy dealing with issues of feeling afraid and not yet competent with a giant creature that could kill them, and then this aggressive huge kid comes out making a huge ruckus...

In situations like that I just feel like the only way he calms down is if I say "you need to stop this now or no computer tonight." That can definitely calm him down in the moment, especially in front of strangers, where he's more inhibited to a certain extent than he is with just family, thank goodness. There is no other way I've discovered to get him out of the barn and no longer yelling at me. I've had my husband, my mom, my dad, my daughter come out and tell him he has to leave and come in with them and he'll still just flat out refuse. So if the threat of a consequence can control his behavior in circumstances like these, should I still use it? (And yes, he often does lose the privilege - I'm very clear with "this is your warning, this is what's going to happen if you continue" and "ok, you've now lost your computer privileges for tonight", so while he might not be able to understand fully or comply due to executive function issues or whatever, it's not like I'm unclear or inconsistent.)

So, if I really need him to comply with something and he won't, what do I do? For example, say we have to leave the house but he won't brush his teeth. Do I let him have a face to face intimate tutoring session with his special education teacher with horrid teeth and breath, or do I tell him "if you don't do it, no computer tonight." I can envision backing off on the consequences for meltdowns that aren't really important - for instance being mean, rude, screaming, hurting my ears, kicking me while I'm driving, for that I can pull over and try to help him or just wait or whatever. And I can sometimes get him to brush his hair and change his clothes if I mention it. But he hates to brush his teeth, even if we might see various girls around town that he has crushes on... So what about when I need him to change his behavior or do something right then, yet he refuses?



0223
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06 Jul 2013, 12:42 am

And by the way, he has had face to face intimate sessions with teachers and therapists for which he has not recently brushed his teeth, and they have told him it's gross and makes people have bad opinions of him and not want to be close to him and can affect his friendships and whatnot, and he flat out says he does not care. So the 'natural consequences' of icky teeth have not helped at all...



0223
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06 Jul 2013, 1:38 am

Another point. He almost always only has these big freakouts when he's been told no about something. So it's hard for me to see them as meltdowns. He is actually somewhat self aware and will ask for help some times when he's starting to feel weird. But the big blow ups with the screaming and the mean statements and the kicking, shoving etc are when he is told no. No he can't have ice cream right now. No he can't have an extra hour on the computer. No he can't skip feeding the cats today. No we are not having fast food again right now.

And it's not always like it's a no... It can be phrased "you'll have a chance to earn extra computer time tomorrow but not today as it is already 10:30 (end of game time.)" Or "the cats must be fed every day." So it's not like the word no is triggering him. He is very oppositional and very controlling and easily meets the criteria for oppositional defiant disorder although of course they won't diagnose him with that when he has something more primary like autism or bi-polar. And it's basically always when he doesn't get his way. He will occasionally have a freak out over video game frustration or lego frustration but he's way more likely with those to accept help from me in calming down. But when he's mad that he's not getting his way, he won't take any suggestions or accept any help. Only the threat of punishment has stopped his screaming and kicking, or if it's not important that he stop right away then it just peters out over time.

So to me they seem more like tantrums - when he's trying to get something that he's been told he can't have.



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06 Jul 2013, 3:07 am

DW_a_mom's advice, is as always very good. It is always good to hear from someone with an older child.

We went through the counseling/therapy stint, too. The middle child (12) is ADHD/ODD, so it mostly focused on him. The thing with their strategies are that they don't take into account the over-stimulation. This would be a time when stimming, deep pressure, quiet place, etc. would be needed. Even when he was little, my oldest's (13, HFA) calming thing was to be removed from the situation and put in a dimly lit, very quiet room, preferably where he could hide under the covers and block everything out. My youngest (5, not diagnosed yet) has a giant (about 4 ft long by 20 in wide) tub filled with 3-4 inch sections of pool noodle for a "ball pit". It has an extremely soft blanket, and usually some kind of spiky light ball sitting in it. We put him in there, cover him up with blanket and hand him the ball. He has gotten so used to it that it starts to calm him down just knowing we're heading that way. He lays in there under the blanket with the ball pressed against his face and watches the lights. It would drive me crazy, but it's what he needs.

What I'm meaning is that several things you mentioned as coping strategies would work well for a person just needing to distract themselves, but are the kind of thing that has a high chance of sending an autistic person further into the meltdown spiral. TV and computer can be very overstimulating--even things that they love about it. (My youngest loves Angry Birds, but a concentrated dose of it leaves him very near the meltdown point for hours or days. He would definitely consider it a reward, and we have used it to get him through high stress social situations, but is very stimulating for him.) If your son plays with the dogs like my younger two do then that would be a very stimulating activity also. The goal is to interrupt the spiral, and you have to shift from thinking about average reactions to autistic reactions.

Hygiene: This is an incredibly common thing mentioned in the tween age group. Even my real world friends who have children the same age, one with mental health issues other than ASD and one NT suddenly started having trouble getting their children to bathe and brush their teeth and use deodorant at about 11, but it also seems to be something that pops up frequently with even much older people on the spectrum. I've tried social stories sort of (I'm pretty terrible at coming up with them). We've talked about how it is disgusting. I've showed him my teeth and told him his will end up looking the same (there is a thread of bad teeth running from my grandma to my mom to me to my oldest, thankfully the middle child seems to have avoided it, but given the genetics he needs to be doubly careful, so the refusal to brush is very frustrating).

Some things that come to mind: I know he is a big 12 year old boy, but are you absolutely sure that he is confident in what he needs to do hygiene wise? It turned out that my oldest really wasn't sure how to properly wash his hair, and my mom had to get him over the sink and teach him. He was 12 at the time, and the hair washing willingness has increased a lot. It had to be my mom, because he was too embarrassed to admit to me that he didn't know what he was doing. I know he has heard me say about many things over the years, "You are _____ years old! You should know how to do this!" Which is exactly the sort of thing that I suspect most kids that aren't diagnosed until they are older have heard a lot. We also wrote out a list of all the steps he needs to do regarding hygiene everyday and weekly. This has helped also. Letting him spend some time and pick out his own body wash helped. That control thing.

Getting him an electric toothbrush helped tremendously. I am not sure if it is the lessened fine motor requirements or the feeling or a combination, but it helped a lot. We also found this "Crest For Me" toothpaste which is somewhat between the child sugar flavor and the adult mint flavor. It lacks that bite that the mint ones have, which is something he hates with a passion. Is any part of the hygiene routine tied to something he hates? My youngest hates going to bed (like any preschooler), but he also has sensory issues with the brushing, so I was essentially saying to him, "Go perform this painful and arduous task, so that you get the privilege of doing something you despise." You can see why he had zero incentive to cooperate. We moved it to, if he allows someone to brush his teeth with no screaming and flailing or biting, then he can watch one more episode of TV or have one more storybook. He still hates the brushing, but he'll put himself through it for that immediate reward.

No idea on immediate forcing of a behavior. It's never worked for me. We've been late a lot. The oldest has gone to the car carrying everything but his pants before (and usually the threat of me pulling his pajama bottoms off to dress him worked to get those on him). Maybe carrying mints and dropping the brushing on days that you have a tight schedule and just absolutely have to be somewhere on time, but still working on it on days where you have more time? I would, personally try to avoid huge head to head battles over smaller things. I agree not having awful breath at therapy is a big deal, but you have to pick and choose sometimes. Is it more important that he get there on time not at near meltdown or post meltdown, or is more important that his teeth get brushed right at that moment?

Last thing, and I'll quit rambling. It's usually said somewhere in the first thread. The general rule of thumb is think of a child 1/3 younger for any given area. Is there something he is doing that in an 8 year old would be considered no big deal? Also actual development with ASD tends to be very uneven. They might be 12 and functioning at 16 in one area (maybe a special interest), but at 4 in another area (maybe executive function), 8 in a third area (perhaps pragmatic speech) and right on age level in a fourth area (gross motor skills for example).



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06 Jul 2013, 3:28 am

0223 wrote:
Another point. He almost always only has these big freakouts when he's been told no about something. So it's hard for me to see them as meltdowns. He is actually somewhat self aware and will ask for help some times when he's starting to feel weird. But the big blow ups with the screaming and the mean statements and the kicking, shoving etc are when he is told no. No he can't have ice cream right now. No he can't have an extra hour on the computer. No he can't skip feeding the cats today. No we are not having fast food again right now.

And it's not always like it's a no... It can be phrased "you'll have a chance to earn extra computer time tomorrow but not today as it is already 10:30 (end of game time.)" Or "the cats must be fed every day." So it's not like the word no is triggering him. He is very oppositional and very controlling and easily meets the criteria for oppositional defiant disorder although of course they won't diagnose him with that when he has something more primary like autism or bi-polar. And it's basically always when he doesn't get his way. He will occasionally have a freak out over video game frustration or lego frustration but he's way more likely with those to accept help from me in calming down. But when he's mad that he's not getting his way, he won't take any suggestions or accept any help. Only the threat of punishment has stopped his screaming and kicking, or if it's not important that he stop right away then it just peters out over time.

So to me they seem more like tantrums - when he's trying to get something that he's been told he can't have.


One of the autistic members once replied to a thread and said, sometimes things aren't about the autism. Sometimes autistic people make bad choices, the same as any other person.

So, yes, I believe he could very well be throwing tantrums.

One question though, does it end as a tantrum? My youngest will often start a tantrum over something he's been told no about. Particularly that he has limited time with something he loves doing or that we have to leave the house (both of those are triggers for him due to rigidity). When it starts it is obviously a whiny tantrum. But then he works himself up and it tips over into meltdown. I can definitely tell the difference when it gets there, because all reason and verbal conversation abilities leave (and usually self-harm shows up). At that point, it has to be handled as any other meltdown. It has made discipline...interesting.

Do you have a written schedule and chore list? Does he have a watch or item that could set an alarm or timer for certain activities? Having a written list posted by his bedroom door helped my two older boys get their chores and hygiene done with less nagging from me, which greatly improved the relations with my ODD child. The more often I have to say his name, the more likely it is that I am going to get a fight out of him.

I have an ADHD/ODD kid, so I know it is incredibly frustrating, especially with their typical lack of insight into the causes and consequences and impulse control. I imagine that adding autism and bipolar to that mix makes dealing with the ODD that much harder.



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06 Jul 2013, 8:36 am

0223 wrote:
Another point. He almost always only has these big freakouts when he's been told no about something. So it's hard for me to see them as meltdowns. He is actually somewhat self aware and will ask for help some times when he's starting to feel weird. But the big blow ups with the screaming and the mean statements and the kicking, shoving etc are when he is told no. No he can't have ice cream right now. No he can't have an extra hour on the computer. No he can't skip feeding the cats today. No we are not having fast food again right now.


My son is the same way - I think of it this way: his brain has incredible momentum. Once it's on to something it requires an almost physical effort for him to change it. For this reason, telling him no often causes meltdowns. Transitions and resistance to change is actually one of the diagnostic criteria for autism.

In terms of changing it, we try to think about it being like a "weak muscle" that needs to be exercised slowly over time to build up its strength. So, we try to make the rules and routines very, very clear - which at first, made the meltdowns worse as he got used to it. At first, we made it so there was ALWAYS dessert on Sunday and NEVER dessert any other time, for instance.

Once he was used to the routine, which took quite some time (and, keep in mind that it's impossible to keep a routine perfectly, so sometimes just ordinary life set us back a bit) then we started adding in changes - but we'd warn him. So, this week, dessert would be on Saturday, and there will be no dessert on Sunday. Little changes. As he was able to handle those, bigger changes.

Here's another article I thought was pretty helpful: http://www.goodtherapy.org/blog/transit ... sm-0508135

BTW - I want to commend you on your thoughtful approach to your son. When we were in the place you are, we were pretty much freaking out.

Other resources: there is an "index" stickied to the top of this board with some threads collected by topic. Some of your questions might be answered there.

Also, I'd make sure to have your son's speech tested. My son was hyperverbal, spoke full sentences quite early, and had excellent articulation and a vocabulary beyond his years - we were shocked when the therapists told us he had a speech impairment. Pragmatic (social) speech is a common deficit in kids on the spectrum who have no other speech issues, and the therapy was a lifesaver for us. It turned out DS only was understanding about 70% of each interaction because he missed all the nonverbal cues.



0223
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06 Jul 2013, 2:32 pm

Thanks everybody. Yes, the counseling... It seems great when strategies are being planned out in the session but it never seems to translate to the real world. "But you decided in counseling you'd try punching a pillow." "SCREW THAT! I'M NOT GOING TO TRY THAT! THAT IS STUPID! NOW GET OVER HERE AND GIVE ME THAT REMOTE CONTROL!" Ugh.

He has two regular toothbrushes and three types of battery operated ones. We have three flavors of toothpaste. He's had instruction his whole life from me and the dental people on how to brush and floss. When he actually starts, he gets into it and does a pretty good job. He does have some oral dyspraxia still and forgets about certain regions of his mouth but he's got a routine we've worked out that helps him cover all the areas. It's the same for showering and washing his hair and brushing his hair - anything really. It's the starting that's the problem. Once he's doing it, he's competent. He'll scream for hours that he's not going to shower but as soon as he makes the decision to shower, he's happy, singing in the shower, playing with different shampoos, trying different ways to brush his hair, checking out and announcing all the new places that are starting to grow hair.... ;-) In fact it can get to the point that I have to tell him it's time to get out of the shower, but that is always a million times easier than telling him it's time to get in the shower.

We usually just have it be that no privileges can start each day until the teeth are brushed, the cats and chickens fed and watered, and some school work is done (he's homeschooled.) But sometimes if we have an appointment we'll leave without doing those things. Sometimes at that point if it's the least favored activities (teeth and showering) I just forget it for that day because I don't want to deal with the screaming. I can usually get compliance on the school work and the animal feeding even if they were delayed and not done at the usual time. But it's the days where I have to say "OK look, we've had a goofy schedule and you haven't showered in 11 days or brushed your teeth in 5 days, and it has to be done, now, before you're allowed to do anything else" when his is going to get super mad and I just have to wait it out and deal with it. The counselor says I need to orchestrate our life so that he has to do those things EVERY day, before doing anything else, period, so that it's easier for him to understand, but frankly I find that a bit impossible. Some days I just don't have the three or more hours needed to get him to get it done.

We actually spent 2 weeks recently doing a shower every day and teeth twice per day, no matter what, and it did not get better, it got worse, and it got to be that that's all I did all day long, was wait for him to do those things, and then it was bedtime again and all he'd done all day was scream and roll around on the couch angry. That is no way to live.

He's got printed lists. He's got a chart to keep track. He gets warnings so he has time to transition.
Getting super firm right up front and saying "do it right now or no computer tonight" actually seems to work best - like the stress turns his brain on and it momentarily stops being made of molasses (and in fact in general he "performs" better for anything when there is some stress involved, like if I get hurt, he's like Flash Gordon, on it, doing what needs to be done, same for an animal or some other sort of kind of emergency.) I don't like controlling him like that though, with the threat of punishment. And when I say it works, it works in the moment to change behavior, some times, but if he actually doesn't comply and actually does receive the consequence, he tantrums over that and doesn't care the next day when he might have a chance to avoid it again.

So, to summarize, it's currently set up such that he can "earn" computer/game time, but he often chooses not to and then is mad when it's later in the day and he's not allowed on. I can sometimes use the threat of him losing the computer to stop him from a current escalation. If he doesn't stop and I do wind up giving the consequence, he has a way worse blow up and it doesn't seem to affect the frequency of the problems. (Or maybe it does - I mean really, maybe he'd be screaming a lot more but he manages to keep it under control some of the time to avoid losing privileges... How would I ever know?)



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06 Jul 2013, 3:25 pm

I think you are dealing with a lot of complex, interwoven issues and before I get into anything else, I want to share one observation:

Your son's day sounds exhausting.

I, myself, can't function with a long list of "must do's" before settling into work or an activity. Its like the "must do's" kill all my momentum for everything else. My understanding from reading these boards all these years is that that can be a lot worse for people with ASD's. Just facing the world can be draining for them, so they need a lot more down time than most of us.

For me, doing the "must do's" in sprinkles when there are natural ebbs in my other activities works best.

I think it is worth (a) having a conversation with your son about what sort of daily schedule he thinks he might work best with and (b) finding ways to simplify the family life so that there is simply less that must get done.

On some of the other items:

It is entirely possible that sometimes your son throws tantrums, and sometimes he has meltdowns. He is still a child, and being a smart one, he'll learn the patterns that get him what he wants. That is one reason really, really really knowing your child and his patterns and needs is essential. No easy task, of course, but you need to fully understand the issues the ASD causes him, AND know what his reactions look like. It sounds like he has developed many layers of self-defense, so it is going to be complicated. And, as another person pointed out, tantrums can lead to meltdowns.

As difficult as it is, keeping things predictable for him, and heading off expectations will make life easier. If cries for sweets before dinner are a common problem, get in the habit of setting out fruit about an hour before he is likely to make that cry. Or crunchy carrots. Etc. If thirst is a common issue, have him carry a water bottle and keep it filled (a lot of ASD kids seem to get very thirsty). Make sure everyone around him applies the same rules. When a day is going to look different than the normal routine, remind him the day before.

Lists and charts can be great, but they can also become part of the problem. When there are too many, they are clutter instead of an aid. So, think about it all, what is needed most.

We have lots of threads on teeth brushing and washing, but it sounds like you've already dealt with the sensory aspects, and the problem now is that these things are "must do's." Interruptions to his momentum. Dealing with that will take a different tactic, and my instinct is to say that in part this is all about control for him: a need to feel in control. That is very common for those on the spectrum because, as noted before, the world is confusing and out of control for them.

Fireworks are a funny thing. Beautiful, yes, but also a sensory nightmare. Your son may have difficulty sorting through the fact that he is both attracted to and agitated by activities like that. An issue along those lines could account for the sudden flip in moods.

It is my (mostly) NT daughter who can flip like a light switch from happy to angry. Really hard to solve. In many ways, she is really fragile inside. And she is a perfectionist. So she has this veneer she applies, an image she has devised that she steps into and perfects. But it isn't all that real and if something sticks a pin in it, if anything runs off course, she is like a balloon popping. She doesn't know where to go from there and she'll completely break down. What she needs in those times is to cocoon, just escape, not have any obligations, anything to do, anywhere to go.

When you have kids with mood issues, I think you have to let go of a lot. You simplify, simplify and simplify. That is what works for us, anyway. My kids do need activities and schedule, but they also need a lot of time they can control and use as they wish.

Anyway. Random thoughts. Hope something in there helps.


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Mom to an amazing AS son, who recently graduated from the university (plus an also amazing non-AS daughter). Most likely part of the "Broader Autism Phenotype" (some traits).


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06 Jul 2013, 3:51 pm

0223 wrote:
We actually spent 2 weeks recently doing a shower every day and teeth twice per day, no matter what, and it did not get better, it got worse, and it got to be that that's all I did all day long, was wait for him to do those things, and then it was bedtime again and all he'd done all day was scream and roll around on the couch angry. That is no way to live.


Do keep in mind that things getting worse is a typical reaction at the beginning - although, again, it sounds like you're doing a lot at once and the complete freakout you describe seems more like overload than just resistance to change. I might try tackling each one of these things one at a time, and get the other one in where I could, so teeth in the morning no matter what, teeth in the evening and shower when it was possible. Maybe do that for a month or two months, and make sure there was an immediate reward for brushing teeth every day. For us, brushed teeth = one short YouTube clip immediately afterwards.

After the freaking dies down over the once-a-day teeth brushing, then you can add in either shower or the second brushing, whichever sounds more important to you. Then that routine until it is second nature. (For bathing, you might also want to think about offering baths or just a complete washdown at the sink with a washcloth. If you can find a work-around that is acceptable, it's better than dealing with it head-on.)



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06 Jul 2013, 4:16 pm

I fully understand what you're going through. Sometimes it feels like we put in far more effort than our kids do over the simplest task. Sensory issue, check. Anxiety, check. Change, check.. etc. We try and work around all possible issues that might trigger a negative response.. plan after plan after plan.. and with little rewards sometimes. We spend countless hours at night, thinking and obsessing over new ways that MIGHT help with a problem.. while the rest of the world sleeps. We spend time and money and resources, only for the system to work for a week or two or a month.. then, it's back to the drawing board once again. For me it's also the anxiety provoking behaviours that leave me ashamed, embarrassed, humiliated, when my son is screaming blue-murder over having to shower, work on 4 math questions, clip toe nails.. even WITH supports in place. I could go on and on..

So ya, I understand. It's exhausting and I feel for you and everyone in your family.



0223
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06 Jul 2013, 11:54 pm

Thanks so much everybody AGAIN! :-) I don't think the daily list is that bad - and he's the one who decided on them. It's as follows:

- feed and water cats and chickens (they are within 50 feet of each other and about 100 feet from the house so it's not like it's really a hassle to get to them). I almost always go with him for this because he's afraid of wasps. Sometimes he'll want to hurry and get it done so he can move on to whatever fun thing is happening that day and he'll do it without me. But if he feels like he really needs me that day, I'll go with him.

- school work. A half hour of reading (his current novel or a text of his choosing) and 6 to 8 math problems and one other thing (sometimes a writing assignment, sometimes a worksheet in a science workbook, etc.) Sometimes if he's having a good day I'll offer more work in exchange for more time on the computer later and he usually likes that idea. Sometimes he asks for more school work to earn more time. If we have a special event that day and are super busy we talk about skipping schoolwork if necessary but he'll often at least do some reading in the car.

And that's the extent of the daily work. A couple days per week we do extra stuff like take out the garbage, vacuum, straighten up, do some chores in the barn... I'll warn him the day before and the morning of, "this is the extra chore day." Sometimes he asks for chores he can do to earn more time. The excitement of it being extra chore day actually seems like it's good for him - he engages and works harder on those days when there are novel things going on. I haven't pushed teeth brushing or showering lately but two to three times per week I'll say he needs to do it at some point that day and if I pair that with "and when you're done you'll be able to get on the computer" then it usually gets done. It's mainly if something has to be done now or soon that there is a problem. Or when he wants something and the answer is no.

And as for the daily work it's not like he can't do anything else until he completes it. He just can't do his computer or video game time. He can play with his toys, watch tv (not forever), go hang out with grandma, hang out with the friends that come to the barn to see their horses, have friends over if friends are available (that usually is a great time to get him to brush his teeth - hey, so and so has asked to come over to hang out with you, hurry and brush your teeth and I'll call them back and tell them yes...) If I'm heading out to the store he can come with me. He just can't do the major privileges until he's completed the tasks. Some days he chooses not to bother completing them even if it means he doesn't get to do computer/video games, but that's a problem with the animals who obviously need daily care, but so far I just do it for him and he just doesn't get to do computer/video games.

And it wasn't always computer/video games. It used to be making stuff out of duct tape. For months that was his preferred activity, so that's what I used as the incentive. Before that it was building with legos. Before that it was playing his DS. It'll be one thing for months on end that's his favorite thing to do, the only thing he'll work for.

So with respect to the suggestion about giving an immediate reward, like one youtube video after teeth brushing, that's a great idea but I would have a big problem getting him back OFF the computer after the one. It would turn in to "if you don't get off now that you watched your one, you'll lose time for the next time." It really seems to work better for him to get everything done and then he's free for the rest of the day. We've done the check mark on the points chart as an immediate reward but that's not very motivating for him. I've done tickets but he loses them or steals them from their source and tries to pretend they are ones he's earned.

Anyway thanks so much, it's great to read everybody's perspectives. I've read most of the indexed posts too.