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Hi everyone ! my son was dx pdd nos but the dx changes last week to Asperger's. i am looking for information and support.
he is almost 13, and has other dxs of adhd, oppositional defiant, and global dyshpasia. He is high functioning and up till finding a new school recently he was having melt downs characterized by going under his shirt/jacket and going into a fetal position on the floor and being non responsive for over an hour at a time. we are hoping that has ended but the school calls this phase a honeymoon period, and we will see if it occurs again in the next few weeks. When he doesn't want to do something he is asked to or supposed to, he throws fits of anger and it is impossible to calm him. cant go NEAR him when he is angry. he slams things and throws things......
does any of this sound familiar to anyone? is there anything i should be doing to find a way to change this behavior? He is functioning at about a 9 y/o level even tho he is almost 13. Luv

There are people who don't do things they are told to do because they don't like being told to do things. It is a control issue, and these are the people who have ODD.

They are also spiteful, and vindictive.

Children with AS, on the other hand, don't do things they are told for two reasons.
1. The reasons most children don't do things they are told.
2. Because they can't. For one reason or another, it's too much for them.

Children with AS often get mis-characterized as having ODD because people assume they are dis-obeying intentionally and harbor negative feelings towards the authority figure for being told what to do, but children with AS are really defensive rather than offensive and while they may become upset with people, their responses are usually immediate and they are rarely spiteful or vindictive.

While the DSM-IV does not prohibit having a diagnosis of AS and ODD simultaneously, I'm skeptical the two can exist together because to intentionally anger someone and assert dominance over them, as children with ODD do, requires understanding concepts that children with AS generally do not fully understand. For example, psychological warfare.

That your son essentially shuts down when he doesn't "want" to do something, implies to me that he can't do it for one reason or another, and that people are not respecting his boundaries and he feel harassed and pressured to the point that the only thing he knows to do is to lash in self defense our or shut down.

Often times the reasons someone on the spectrum have difficulty doing things are things NTs have a very difficult time understanding because they have never experienced such difficulties themselves, so even children with intact expressive language abilities have difficulty pleading their case...it often falls on deaf ears, and your son has global dysphasia so he likely struggles with explaining the more simple reasons he has difficulty doing things he has been told to do.

People on the spectrum may have difficulty doing things they are told to due due to...
1. Sensory issues.
2. Transition issues.
3. Processing deficits:
a. Slow processing speed.
b. Mental organization skills.
c. Auditory processing disorders.
4. Memory issues.
5. Anxiety.
6. Stress

People on the spectrum are square pegs that have been forced into round holes and are frequently constantly under stress because of it.

I find a lot of these things that others try to force people on the spectrum to do, that cause melt downs, aren't really things that are relevant to anything, and there really is no logical reason to force the person to do it.

Chronos said it beautifully. My daughter reacts to too much sensory input (classrooms are way too much) by crawling around, screaming, hiding. She often can't tell anyone what's wrong and if she does no one understands. If she's in a meltdown, yes, someone could get hit. She can't help that. It's not an intentional behavior. It's a reaction to sensory pain that she can't tolerate.
She's functioning much better in a smaller classroom with headphones to cut the noise. They have a place to hide when necessary. Kids are allowed to do that.

If you and the school can reduce the sensory overload and frustration that might reduce the meltdowns. Headphones can help. If he's sensitive to light he could wear a visor. Florescent lights that flicker or buzz are horrible. He may need breaks to get some quiet. If he has problems expressing himself he may need an alternative for important stuff. My daughter had a meltdown this week because one of the kids was whispering crybaby to her. She didn't have a way (in her mind) to tell anyone.

thank you both for such detailed explanations. Chronos you did explain very well. i had forgotten to mention that my son also has sensory integration and tactile sensitivity issues too. sounds become way too much for him. i already suggested to the school for tennis balls on the chairs in his classroom. he is in a class of 4 other students besides himself so that helps. before when he was melting down in the other schools had about 10 kids in the class. it was too much for him also, other kids Do tell him things that sets him off. as well as him also. but nothing is ever "his fault".we are working on trying to get him to understand that His actions also have reactions just as that when another person says something to him.. and they way it makes him react. the problem is that no matter how many times it is explained to him it doesn't seem to get through to him for an understanding. i also noticed that when he does shut down, afterwords he don't remember it. how can we get through to him when he doesn't remember anything but what the "other" kid did, and doesn't understand what went wrong.

I am an adult with AS, diagnosed a few years ago. I've noticed something about myself that may be going on with your son. I'll explain.

I seem to have a good bit of what's called "demand resistance". I'll need to do something, or be asked or in some instances required by law or rules to do something and I just can't. Because I have to do it. Or need to do it, or someone expects me to do it. It's not exactly like ODD, because I'd love to be able to do the thing in question, but it becomes too much. Everything gets connected together and tied into one another in my mind and a simple thing becomes too much because I feel too much pressure.

I can give you a made up example, but even though it's made up, this is exactly how it works in my head and why I have trouble with things. I am going to incorporate several types of percieved pressure into it, because that is the problem for me. Percieved pressure. To please, to do something that I have to do and do it right to survive, to function, etc.

Lets say I go to the store for milk and on my way home I am pulled over. I get a ticket for an expired tag. It's been expired over 10 days, I'm aware of it and plan to get a new tag on Friday when my husband gets paid and off work early enough to take me to the courthouse. It's a ticket. It's simple to handle, just mail in a payment or go to court and show proof of renewed tag and it's thrown out. Simple. Maybe for someone else.

In my head on the way home all I can think of is "Great, now I got a ticket. Something else to pay. At Christmastime too". So I come in the house and while thinking of having to 1. Pay the ticket or go to court and show I have the tag, 2. Go get the tag like is on my to do list for Friday, I have all this additional pressure that I just now notice. Things that had been going along smoothly become enormous pressurized things that I am supposed to finish and I just now notice them all.

I had gotten the milk for a dessert recipe for that night. It's a cake. I already have the eggs and butter on the counter coming to room temperature and in my head when I see them, they are almost yelling at me or mocking me telling me I have commited to making that cake. A cake is dessert and I also know I have to make the dinner too. Thats more I have to do. Great. How will I enjoy any of this food when I know that now I have gotten us another obligation to pay? I won't enjoy it, but I have to do it. While putting the milk in the fridge I hear the dryer stop. I have clothes to fold and put away. I put the milk in the fridge, eye the eggs and butter, grab some hamburger out of the freezer and put it on the counter to thaw for dinner, and get the clothes out of the dryer. I set the basket on the diningroom table and start folding them to put away. As I'm folding I run across a pair of jeans of my son's with a torn belt loop. I had said I would mend that. I fold them and put them in a seperate pile to go into my mending basket. Which I remember is full of things I haven't mended yet, because I haven't had a day to sit down and do them. I move them back and forth between the two piles, his room and mending stuff. I remember the ticket. I pick it up off the kitchen table and take it to the basket of things to be taken care of like bills, insurance, etc on the mantle in the den. I'm still thinking about the ticket, the cake, the tag itself, the hamburger, my son's pants, my other mending. When I put the ticket in there, I notice the bills and see the water has sent us a final notice due in two weeks. I've known this and planned how to pay it. But now the ticket. And the cake. And the mending. And the supper. And the clothes to put away. OK, I can do this. So I'm going to do it one thing at a time. I start putting the clothes in the bedrooms for my kids to put theirs away when they get home. One daughter left her senior graduation invitations order form on her coffee table. We have two months to get those. But oh yeah, we need to do that. I move it to the basket too. With the bills, and the ticket. I'm thinking about all of it now. I need to put that hamburger meat in the sink to thaw quicker. I do then take my other daughters clothes into her room. I notice the tummy pill on the bedside table with the water I brought her when she woke up. She forgot to take her tummy pill this morning. I should drive the half mile to the school and take it to her. In the car with the bad tag. Oh yeah, the ticket. Well it won't kill her to take it this afternoon. Because I can't take it to her. I'm musing on this while I put my son's clothes in his room. I see his tv and DVD's in there, and the DVD's are scattered so I pick them up and neaten them and that reminds me that his Xbox is on layaway. He knows it and I'm glad to get it for him but I have to make a payment on that Friday too. Can't forget. Xbox, tummy pill, fix the pants, other mending, supper, cake, water bill, ticket, tag. The phone rings. They want to reschedule a dental cleaning and checkup for my kids. I go to put it on the calander. it's tomorrow, but before I get the tag. Tag, ticket, xbox, cake, supper, pants, mending, invitations, water bill. I write it on the calander. Everything else is done now except the cooking. I look at the eggs and butter on the counter and I see them and think of everything that I have to do. It's too much. I can't bake a cake when I have to cook dinner, then let my kids wear torn things because I can't seem to get around to mending, and then why would they need to wear mended things without bathing when the water gets turned off because I'm sure I'll forget that, but what if I go to jail over the tag and forget the ticket too, and my daughter developes some horrible stomach problem because she didn't take her pill thanks to me not remembering it this morning and not driving up there now to give it to her, thank you tag and thank you ticket, plus I gotta pay the xbox this weekend and oh yeah I almost forgot I have to get the stuff to make the pasta salad he can take to his mothers this weekend after I pay the xbox and ticket and get the tag and OMG there's a cake I have to make.....

Forget it, I can't do it. I go in my room, shut the door, put on a nightgown, crawl in bed and stay there for a day. Over a simple ticket for an expired tag.

The reason I typed all that out is to let you see how one small insignifigant thing can spiral into thoughts of pressure, which makes me feel unable to function and then shut down. It may be that way with your son. One easily handled thing, on top of other easily handled things, as in my example, can do this.

I'd suggest asking him if he feels pressure and also talking to him about list making. A way of planning things out can help. Sometimes, even if you have the best planning methods ever though, it can't.

This is just how it works with me though, and it may be an entirely different thought process with your child. I hope you help him get things worked out.

Frances

OMG ! olive oil mom. i don't know about my son but you just described a typical day for ME ! !! ! I had one of those days with a ticket for illegally turning left on a green light. ( turned out no left turns were allowed. i didn't see the sign right up in front of me on the light sign).
i planned on paying it right away (and many other bills too) but it got away from me....... i ended up with a bench warrant out for my arrest for 1- not paying the ticket and 2- for not showing up in court. and my license was suspended all because i forgot to pay the small ticket. Alos all the house bills got very behind. each time i begged my husband to be the one to make sure the bills were paid, he'd tell me to get off my a-- and stop being lazy. at the same time yelling at me for them not getting paid and not getting the housework done.
It is QUITE normal to me to even have things planned ahead of time and then totally forget to do what i need to and then it gets TOO much to handle and i find myself in bed. The worst time this happened, my husb called the police and they had a screener come out to assess me. i wasn't eating or drinking or taking any of my medications that i was supposed to take. ( i was also suicidal) This went on for months before the other ppl were called. They took my choices away from me and committed me to a hospital for Sever major depressive disorder. i was in and out of hospitals for the next 5 months. I was only days away from them forcing an ect on me and from being committed to a state hospital when the medications finally began working. Now i take my meds regularly (so i never have to go back to the hospital again). However, i AM back to having to remember to shower, and take the meds. I am finally doing what i am supposed to. Plus all the responsibilities of raising children and the things that go along with that. To top it off, I took my two youngest (minors) and left. Now i am raising them (with my family's help) for the past month. There are SOOO many changes. Too many.and i HATE change.
So i do understand my son. problem is i have similar problems as him (not dx'd aspergers or anything like that) plus anxiety, depression, and dissociative identity disorder NOS. It is very difficult to stop my problems and reactions from appearing while he is having problems at the same time.
There are MANY books out there for different things for parents to learn how and why of their children's problems but nothing out there to help a parent with disabilities to help their child with disabilities.
i am very sorry this post is So long. but You hit my Life right on the head with your example.

Sweetie, you could very well be AS too. Not that it matters for getting a dx, except to explain your own behavior to you. Which knowing why I do things, shut down, or melt downs over things where I throw and break things, although rare, are exhausting, can help you to understand and try to notice before you get to that point.

What I do is go to another forum just for housekeeping, and type in my to do list for the day. There is a section for that. I type in what I do, after I do it. It's a better way than paper for me, because other ladies comment and we all support each others efforts, even if it's just picking up one coke can and throwing it away or taking a shower.

It's simply overload. One more thing is just too much. It literally is the straw that broke the camels back. We can deal with many things at once at times and be doing great, but one more little thing is all it takes to make it all seem like too much to deal with to us.

It takes me days or weeks to get over an overload shutdown. I get no help because my husband is passive agressive and he deals with things by pretending it doesn't exist and yelling at football.

Yeah though, that's a typical thing that can happen to me. And the way that once it does, all those other things that are just part of daily life and easily dealt with become way too much. I can deal with an enormous amount of pressure if I expect it. But one unexpected thing thats small can throw me out of my little orbit and I can't do anything then. Your son could very well be feeling overwhelmed. Meltdowns to me are ways to get the pressure off me. Also, oddly enough they are ways where I am trying to convey to others how horribly pressured and overwhelmed I feel, but rather than see that, they simply see me acting an ass by breaking things. Or being lazy by staying in bed and not doing anything. Even if I try and explain it, they don't get it. Or don't want to. It doesn't translate to them, I suppose.

If I were you, I'd ask the son about his reasons for it. Because he has reasons. It's not like he thinks it out and plans it, it's a reaction, but he knows why it's happening. Ask him to tell you and talk about being overwhelmed by things. Whether it's words, or events or sensory or whatever, it's there. He may not have the words to express it at his age, but he will get the idea behind it if you bring it up.

I totally feel you about your situation too. I get horrible, horrible depression. I'll be in bed for weeks at times from it.Right now, I got a lot going on with me, and I'm fighting just going to bed now, but if I do, my husband's not competent enough to deal with things and so I won't. Although I might.

Frances

Sounds like me. It could explain some of KB's resistance to school work as well. She has a streak of perfectionism so that if she can't do it perfectly the first time--and who could? She won't try at all. And by "won't" I mean to the point of meltdown. She might try difficult things like reading 1:1 with an adult, but the more she's exposed to the scrutiny of peers the more she resists. "Demand resistance". Wow, that explains a lot. Thanks.

i keep seeing AQ. where do i go to take an AQ for adults. i can only find one for children.

Frances, you just described exactly what happens in my head! Very well stated.

The wierd thing is, I'll do fine with those other pressures on me until the one thing blindsides me. I do make a big deal out of small things, because it's the one last small thing that I can't handle. It's not that one thing per se, it's that the one thing is on top of every other small things, which I have laid out absolutely perfectly in my head so that I know they will get done, when they will get done, and how they will get done.

I only have so much room in that one part of my brain where I can put things off to deal with until later. When it gets full, that's when things go bad.

This is why I can do seemingly fine with huge problems when they hit, and I can handle them and stay calm about them. But only if they hit when everything is ok. When my mother gets very sick as she has in the past and we are worrying that she may die, I respond by cleaning my house and getting caught up on everything else. That seems shallow, because people would be coming here for the wake, and we lay out our dead in the house in my family, but it's not that. It's because I know it's going to be a huge deal when it happens and I will have to spend so much energy on dealing with that, that I won't be able to function if I have anything else at all to deal with at the time. This is going to sound flippant, but I don't mean it like this. But it's like this in my head. Three day backup of laundry plus the icemaker breaking, I can deal with. Mother dying, funeral arrangements and all the people in and out of the house, I can deal with. Both at once, I cannot deal with at all. So, I can deal with everyday things, and I can deal with horrible things. I just cannot do them both at once.

Frances

Frances I would have that same reaction when I know something big is maybe going to happen. I think we get it because we know inside that we won't be able to handle both so we have to get ready. Thank you for expressing all of that, I thought it was just me and just knowing there are others like me has been a source of comfort lately. When I get like that (the preparing thing) my family calls me paranoid!

You want paranoid? Want to look at my 2012 pantry? I don't believe in it, but I'm ready just in case.

Frances

We've been forgetting, I think because it's been said so often, but many of us highly recommend poster Tracker's book: http://www.asdstuff.com/works.html (click on the title in the left column)

Also, one key thing to think about is finding replacement behaviors: after you have determined what you can do to make a better environment for your son and create a world that makes sense, it's something to try.

One behavior at a time, when you can talk things through with your son, find an acceptable replacement for the unacceptable behaviors. For instance, my son now goes to his room instead of hitting us: it took over a year of work for him to be able to actually do this, but with all of us working at it diligently (he didn't want to hit us, but he also didn't really believe it was possible to stop) he eventually replaced the hitting with going to his room.

It meant we had to remind him every single time before he lost control. We had to remind him, and ask him to go to his room every single time after he lost control, even if he'd had a slip and hit us. We spent a lot of time talking this agreement through, we had him sign a contract, we discussed that it wasn't a punishment but a chance for him to calm down; it was a long process, but it was eventually successful - he hasn't hit anyone deliberately for over a year.

Good luck, I know how hard this is! It's a long road, but remember that it isn't your child's fault - but even if it isn't, he still has the power to change things with your help, even if change is slow.