high functioning issues

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Hi everybody. When your HFA kid has a high IQ and is hyperlexic, what all do you wind up doing for him around the house? Anything you have to, I guess is the answer, so this is sort of a dumb question, but I would just sort of like to compare, if anybody feels like writing about it.

My son age 13 has the Pathological Demand Avoidance (PDA) form of HFA. He's not really high functioning in the home. He uses social mimicry and social manipulation to look kind of normal in public, but since he came off his meds that he'd been on for 8 years, he's not doing quite such a bang up job of that and is having some problems in public more so than usual. But at home he's been pretty consistently difficult since toddlerhood. In fact he's still like a toddler in lots of ways at home. For example:

- Still wants to sleep with me, although can usually fall asleep in his own room if I sit with him and as long as he's taken melatonin, which he's been on since age 5 for sleep. If we forget it, happens once per 6 months or less lately, he's up til 4 or 5 AM.

- Has never picked up clothes he's thrown, and throws them everywhere, and has never picked up garbage or leftover food or dirty dishes or toys/household objects he's been doing stuff with that he throws when he's done. Even to the extent that you can't open his door or the door to the bathroom due to the stuff he's thrown down; he'll struggle and scream about the door but won't pick up the stuff. I can sometimes get him to go on a 90 second sweep of stuff that needs to be picked up/thrown away if I keep it exciting and like it's an adventure or a mission before we do something else exciting. But he's never noticed on his own. He'll run out of places for his computer keyboard and will just put it on his lap or occasionally brush everything off onto the floor, but never throw/put the stuff away.

- Same sort of issue I guess, he'll get out food and leave it out. If I don't check around where he's been every couple of hours or so I don't find the milk, cheese, etc that he got out and left out in time to get it back in the fridge. And of course he leaves bread and crackers and cereal boxes open and on the counter, always.

- Won't change clothes, won't pick out clothes, most of the time. Now that he's kind of into girls he sometimes will, but part of the PDA is avoiding the demands of everyday living, so he just doesn't want to change into clean clothes. He won't bring his jacket even if I tell him where it is, show it to him even, even though he knows and can tell you he knows that he'll be cold. Then he screams because he doesn't have his jacket. If I try to bring it anyway he'll often rip it out of my hands and throw it down and say "I said I don't want you to bring it." Any jacket, sweatshirt, whatever, he has many including some favorites.

So for this kind of stuff I guess I should be happy he can sometimes obtain food for himself and can usually get his clothes on if I'm able to convince him to change and can go on a mission for 90 seconds to pick up stuff laying around. But I feel like I always want more competence in these areas. Do your kids do these same things? For the jacket issue I keep three in my mini van so that we don't have to deal with him not wanting to bring one, but sometimes he'll see them close to his seat and he'll throw them because he didn't want them, and then 2 minutes later he's screaming because he's cold and he can't reach his jackets that he threw so we have to pull over.

The major issues that really wear me down are the arguing, lecturing, demanding that I say and do certain things, that I respond in a certain amount of time... If that all just bugged him then fine but when it bugs him he begins yelling at the top of his lungs. For the last 2 years my ears are throbbing at the end of every day - I am serious. He talks nonstop about his special interest and if after 45 minutes I seem a bit bored he starts screaming at me. He keeps up his end of the conversation incessantly and if I'm with my mom and I need to say something to her in the moment, like hey look at the oven, your biscuits are burning, my son will go crazy mad that I spoke while he was speaking. We've explained many times that if he talks nonstop and doesn't give us an opening to speak up about something urgent, we might have to speak while he's speaking, and he'll say OK and that he understands but then when it happens he gets super mad. And he'll even say we've never talked about it before. We've consulted with him on if he'd want us to try giving a hand signal, whispering, saying "excuse me I have to say something", and it all is just the same result when it happens. I'll even suggest he get on his tablet or computer but he often keeps right on talking - part of the PDA is that he won't do even his preferred activities if I'm suggesting it as a way to get him to stop doing something I don't want him doing.

He also does things like interrupts us if we're saying something he doesn't want to hear. Like I'll say we're having dinner in an hour and in the middle of that sentence he'll start yelling at the top of his lungs whatever, like NO NO NO WE ARE NOT WE ARE GOING OUT FOR DINNER. Or NO NO NO WE ARE EATING NOW, RIGHT NOW DO YOU HEAR ME, NOW. If he can't think of actual words to say and just doesn't want to hear us he'll just yell blah blah blah over us. If we walk in and see him dumping way too much cereal into a bowl or whatever and we start to say can I help you with that, that's too much, he'll immediately start with the really loud blah blah blah blah blah while he thinks of what he wants to say, and on the 5th or so blah he'll switch to YOU DON'T TELL ME HOW MUCH CEREAL TO HAVE, THIS IS HOW MUCH I WANT TO HAVE.

This doesn't happen with every single interaction but it happens many many times per day. If I say I don't like it when you are so loud and say blah blah blah over me he'll do it then too. Any attempts at redirecting cause anger which makes it worse.

He does this sort of thing for anything he wants, too. If he says can I have chocolate milk and I say no, you've reached your sugar limit, as I'm saying that he'll scream WHY WHY WHY I PROMISE I'LL HAVE LESS SUGAR TOMORROW. Or you know, anything, not just food related stuff, basically anything he asks for, if he starts to hear anything but yes, he'll do that. I'll warn him, son, I'm going to tell you no, but please don't scream, and before I get the word scream out of my mouth he's screaming.

OK this brings me to how he'll often do things we say he can't do. He'll ask to throw an apple for the dog to play with and we'll say please use the dog's ball, those apples are expensive, but he'll get it and do it anyway. Please don't turn on those expensive lights, he'll do it anyway. Please don't turn the chair upside down, he'll do it anyway. Millions of examples.

He also directs us all day long. Look at this, look at it for longer, sit here while you look, and he'll watch our eyes to see if they stray from whatever we're supposed to be looking at and he'll go crazy mad if they do. We do spend lots of time with him and we do have periods of the day each day where we indulge him with this sort of thing and I'll explain that look, I'm going to do it for a few minutes, but it's not fair of you to try to control me so much, and it makes me feel very upset and it's not a nice way to relate to other people, have I ever tried to control exactly where your eyes are looking, and I'll give him a warning when I am going to revert back to being more relaxed about where my eyes are looking, but he still very often gets very mad.

I can avoid some major stress if I keep him away from home as much as possible. He's less annoying in public places. But as soon as we get in the car and of course at home he's at it again. It seems like his form of autism involves obsessions with controlling us, and in fact PDA kids are known to develop obsessions with people and to be very controlling. Even when he stims he'll scream for us to look at him. Interact interact interact. It's exhausting.

We travel somewhat frequently and he's almost never like this in hotels. Once we stayed in the same hotel room for 4 days and he started to act more like he acts at home. It's like he needs a certain level of intense things to be happening, and home is boring so he has to create intensity.

Do any of you have similar issues?

I do have a few ideas I don't know if they will work.
My child mostly whines and cries with tantrum. I do have an adult relative who has some features of your sons behavior. His parents were good people and tried but did not have the devotion and skills that I see that you have. He does have a job though but still has many of the melt downs in a home environment.
Your a good mom and have done a lot for your son.


You might want to go over these ideas with your counselor first. Because I don't know if any of my ideas will be all that useful.

1. If making a game of cleaning up helps you than do it. Your not failing if you have to do it to increase the cleanings intensity.
My child works best if there is a reward but some people need there to be a built in reward because there issues are executive and sensory issues. You should not feel bad about this.
I know everything being fun might not seem releastic but it really is just an alternative reward system.
I know adults who aren't autistic who still make games out of cleaning or they won't do it.

2. Does your son like non video games. I am bought a conversation starter game for my children for Christmas. I don't know if it will be helpful with joint conversations but its worth a shot.
Maybe a family game once a day or even every other day.
Maybe a wheel of games. Your son spins the wheel and the wheel picks the games. It might be away for your son to give up some control and still have fun. You can make it your self with maybe an old life game.

3. I get car sick when I read in the car sometimes, if your son doesn't get sick how about placing some books, or games, puzzles in the car.
Also emergency snacks might be helpful. While my children are okay in a car I find that with plane trips they need special non perishable snacks on hand.

4. This probably won't work for you but has been helpful to me sometimes for a punishment if my child is acting out I will say if you keep misbehaving I get to chose the TV show. It sounds silly but my child can be very rigid with TV shows.

5. Now that you can get services if any are in home that might change the intestacy of the home a little.

7. If he is scared of the dark a little crank flash light might be helpful. Being scared of the dark is common with a lot of people and nothing for your son to be ashamed of.
8. With hygiene you can try to let him feel he's in control. Take him to the store let him pick out his deodorant bodywash, toothpaste and his own. Getting him to use it might be an issue.
You can also tell him he can brush his teeth in the shower if he wants to save time or find away to make it a game. He's a spy and has to take a shower in 5 minutes.

We are just a few months short of 13 here, and we have some issues as well, but I don't think as severe as yours. Some of them are easier to work around than others. We use a lot of preparation and contingencies and it works well with our son (for the most part- some things are almost insurmountable). Most of his issues revolve around routines he feels MUST be done the correct way.

*Insists on a bedtime ritual that includes kissing in a certain order/place, kissing the stuffed animal as well, and HAS to take place at a certain time as well. He melts down when it doesn't occur the way it is supposed to, and will not sleep (trust me, we've tried to wait it out for hours and hours) until it occurs. The other kids generally kiss us goodnight and go to bed. We have warned my son that when he turns 13 in a few months, tuck-ins need to change because it is not a 13-yo thing to get tucked in in that fashion.

*Shower routine has to take place a certain way, with clothes gathered (by him) a certain way, and if anything is missing, he cannot shower and has a meltdown.

*Things have to be fair between him and siblings- there must be rules in place for who does what job, who showers first, how chores are divided up, etc etc. That is fine and easy to do, but when something necessitates an alteration in the schedule, he cannot be flexible about it. Sometimes he can be cajoled, or trades can be made with siblings which will make this feel ok to him.

There are more, but I'm too tired to list them Luckily, he will clean up after himself (sometimes needing reminders) because that is the "rule" and he abides by that rule. We use a lot of contingencies to make things happen. For example, his completing X is required in order for him to engage in Y. We also give lots of warnings with plenty of time for changes coming up or for demands about to be made. That is somewhat effective for things he doesn't find deplorable, and not at all effective for things he finds deplorable (writing reflection papers or opinion pieces for homework).

I got a special laundry basket for my child's room. My child does use it but forgets to empty it in the big laundry basket but that's okay for me.


I just thought a good occupational therapist might be able to help your son with the meltdowns.
Check to see if its covered now you have a diagnoses.
I only had access to A OT every few months but I got a lot of good ideas that were just for my child.
So I was able to implement a lot of them on my own.
Some autistic children don't do good with a stability ball but stability ball was a wonderful choice for my child.
A lot of the ideas were cheap. I could adapt things from a regular store or make my own.
The OT explained why my child had some behavior that was specific to my kid.
An OT might want to give your child an assessment of SPD but sensory issues are often part of autism.
While most OT therapies are safe weighted blankets can be dangerous if its used for punishment instead of overload or if the blanket is too heavy for body weight.

What jumps out at me from your description is that there are so many, many problems that you can't hope to address them all at once. I get the impression that you have tried very hard to explain or correct some of these things, but that very few things are actually getting solved in a durable way.

One thing that I got from listening to all the Ross Greene podcasts, is that it's really important to "organize the effort". That is, you come up with a long list of very specific, concrete problems, and you work on no more than 3 of them at a time. You work on those 3, and no other problem, until you find solutions that work reliably and durably. Every thing else is either accommodated or diffused as best you can.

From your post above I gathered the following unsolved problems:
* difficulty falling asleep in own bed
* difficulty putting clothes in hamper after getting undressed
* difficulty throwing leftovers in trash after eating
* difficulty picking up toys after playing
* difficulty putting desk items away when finished
* difficulty putting milk and cheese back in fridge after fixing a snack
* difficulty choosing and wearing clean clothes each day
* difficulty bringing jacket along when it is not immediately needed
* difficulty staying calm when jacket is needed but not available
* difficulty when parent doesn't respond as expected (needs specific situations where this happens)
* difficulty when directions are not precise ("look by the couch" from the other thread)
* difficulty when interrupted
* difficulty when parent wants to change the topic
* difficulty limiting sugar intake
* difficulty when parent says no to a request (break into more specific items)
* difficulty spending time alone when parent is occupied or unavailable

I'm sure there are many more. Sometimes Greene advises just keeping a journal for a week, not trying to solve anything, but just writing down each problem that occurs as it comes up so that you can get as long and detailed a list as possible.

Then you decide on the 3 things you want to work on -- maybe one high priority very difficult one and two that you think might be easy to solve -- and for everything else you figure out how you might be able to prevent, accommodate, or diffuse the issue the next time it arises.

So if you're not working on "difficulty when directions are not precise", you just go get the shoes instead of telling him where they are. If you forget, and tell him "by the couch," and he has a meltdown, you don't engage in a discussion of what you meant, you just do whatever it takes to wrap up the interaction and move on.

For the 3 that you are working on, Greene has a very structured method for how you get the child to help solve the problem. Let's take the jacket as an example. You know he will meltdown if he gets cold and needs a jacket but does not have one, so you've come up with the solutions of bringing a jacket to the car and keeping extra jackets in the car. For some individual reason (which you need to understand), these solutions aren't acceptable to your son. Using Greene's method, you would warn him in advance that you want to talk about jackets, and then have several discussions preventively -- not when you are about to go somewhere in the car -- finding out all his concerns about being cold and bringing jackets. Then you ask for his ideas on what to do. Ideally (I suspect this bit is not always easy) he will come up with a solution that is acceptable to him and that you can live with. You try it out, have more conversations to fine tune whatever doesn't work with the solution, and eventually you get to the point where he's not having meltdowns over jackets.

As you knock out more and more problems, life gets less stressful, and over time your son slowly gets better at identifying his concerns and coming up with solutions.

I think particularly with the demand avoidance, you want to get out of the business of trying to solve the problems for him. He wants and needs control over his environment, so you need HIM to come up with solutions that work for him but are also ones you can live with.

Here's a link to Greene's contact page where you can ask for a therapist in your area who is trained in his method: http://cpsconnection.com/content/contact-dr-greene

And I realize I've just gone all Plan A and handed you my solution wrapped up with a bow. I really hope you find something that helps your son and your family.

So, globally, it sounds like you are dealing with a child who is incredibly disoriented and is trying to orient himself in inappropriate ways.

High-functioning is a loaded term. Keep in mind that all it really means in your son's case (from your description) is that he can use words in English in a gramatically correct way and chooses topics that are somewhat related to what is going on, that he is capable of some fine motor control (can feed himself, toilet and dress himself) and that he's academically in a certain place. We can't really assume any more: therefore, you work backwards from assuming he is highly impaired until you reach lack-of-impairment; in other words, assume that anything he won't do, he CAN'T, until you have good evidence otherwise. Then, working slowly on one thing at a time, figure out what is causing the can't. My son is significantly more impaired than he appears to be, and more impaired than people know...even though I am certain he is going to be OK as an adult, and he's doing very well right now.

I've found this article, which is about a much younger child, to be a good way to understand how people on the spectrum have a very individual way of looking at things that can cause all kinds of confusion and many of the behaviors you describe: http://www.oneplaceforspecialneeds.com/ ... utism.html

Also, something that happens to my son: things only exist to him while he is using them. Once he's done with the use, whatever it is simply vanishes into the background: he often literally can't SEE the clothes on the floor or the milk on the table. He needs a routine in order to deal with things like that - he will never, never be able to put his clothes in the hamper when they come off his body (or I will be shocked if he does.) Instead, we set aside time to pick up clothes - and when we do, I don't direct him to "pick up clothes," I direct him to "clear the floor until I can see all of it. Sometimes it helps to give him categories and specific direction "Clear the floor of clothes and put them in the hamper," and then "Clear the floor of papers and put them in the recycling" and "Clear the floor of books and put them on the bookshelf" Sometimes it works better spatially "Clear everything off the floor, starting in that corner and moving clockwise until the whole floor is clear."

After lunch, we have to make "clean up time" where EVERYTHING gets cleared off the table in similar categories: plates, silverware, servingware, food, drinks.

Keep in mind that for my son, "clearing the floor" looks like an impossible task, because to him, six pieces of clothing on the floor cover the ENTIRE floor - he can't process that you can just roll all six pieces in a ball and dump them into the hamper in one movement. He often has to be talked down, because he assumes it will take all day - I have to help him by standing there and talking him through each step ("Just gather up the things in your reach. Now walk over to the hamper and put those in. OK, halfway there: that took less than a minute, so we only have another minute to go! Now go to the other side of the room and gather up all the clothes you can reach. You've got them all? Good, now come over here to the hamper and toss them in. See? All done, in two minutes.)

There is no "reasonable task" marker for them - kids like my son view everything globally. It is always a "gigantic mess," never a minute or two of maintenance. You have to repeatedly show them that it is literally a minute or two until they have gathered enough evidence to believe you.

Thanks everybody. Yes, the cleaning, that's exactly how we have to do it, and I'm glad to hear I'm not alone. The problem since he came off the atypical anti-psychotic meds that he was on for 8 years is that now he won't. He won't do anything at all, even to earn computer time or anything. He can't think of anything he'd like to earn, and even if he says "well maybe I'd like to get on the computer, so ok, I'll [work with your continual and specific guidance to] pick up my garbage on the floor" then when we start to do it, he refuses.

Thinking of the Pathological Demand Avoidance, I've been somewhat successful in the last few weeks with getting him to do something - for instance, I'll say "I'll just get these dishes because there are too many for you" and he'll feel competitive and get them himself. Those are ways the book suggests to get them to do something. Trick them, manipulate them, make them feel competitive, make them feel you don't think they can do it. Two problems: it's only worked maybe once per week for something tiny, like getting dishes off the table, and I think it's an overall pretty crappy way to relate to a kid. Even if afterwards I can say praise him and say wow, that was great, it's got to suck to feel like your mom thinks you can't do things. Maybe that doesn't matter, maybe all that matters is the outcome. I don't know. But it's exhausting to try to come up with ways to act and things to say to manipulate him into doing something.

What do you all think about him just refusing to do anything? I'll spend a few hours per day with him banned from everything, maybe two days per week when I have time and don't need to go to work, and he still won't do even the smallest of things. If I keep it up all day, he almost needs to be hospitalized, as he gets very agitated from boredom and demanding to be allowed to get on his computer. He goes ballistic over things like I've mentioned, not understanding what I said, whatever.

Today I almost called the paramedics on him because he heated up some green beans and put garlic in them then decided that my elderly mom who's physically disabled should walk from her house to our house (houses are next door) to eat some. She didn't want to because she was resting. She said she'd love to taste it if he'd bring some up for her. But he went totally nuts saying she ruined his life, the green beans are rotten now since it had been ten minutes, that she won't get off her "fat ass" to walk out to show some appreciation for his hard work, that we hate him, that he's trying to be grown up like he owns a restaurant and we're not helping him. We stayed calm and asked him what we could do but he started kicking her furniture and trying to rip up a blanket. We said he needed to come home but he refused - this happens all the time, often he's locked out of her house until/unless he's acting calm. He said a bunch of irrational things like he owns the house so he doesn't have to leave, that he's in charge of us, that he'd call the police on us for wasting food. When I got him back to my house he said he was kicking me out because if that house was grandma's house then that means this house is his house and he's allowed to kick me out. I tried all the "I'm sorry you're so upset, can we talk about it, what can I do, if you want to kick me out maybe that means I'm not helpful to you right now, do you want to spend time alone, do you want to go to your room and pet your cats" etc etc etc but he always always screams NO when we give suggestions. If we sit quietly he screams ANSWER ME. If we leave the room he breaks things and follows us.

So, is there any way to say if this is autism? He's got an autism diagnosis now but this seems above and beyond. But maybe not - that's why I called it high functioning issues. If he was lower functioning and rolling around on the floor screaming or even smearing poop on the wall or something like that, I think I'd have an easier time understanding it as those are obvious autism things. So are these just typical ways that higher functioning autistics freak out? But this is so much like he's either super oppositional or maybe even a bit psychotic. I guess it doesn't matter, I'm just trying to understand.

Next question: the thing I described happens daily, sometimes several times per day. Is it just normal that I can't get him to do anything when he's having this much trouble? I am trying a lot less - I used to push it and wait out his tantrum and then after a couple hours of freaking out maybe he'd do what I was asking (pick up clothes, pick up garbage, all with as much help and specific directions from me as he needs.) But over the last few weeks since reading about Pathological Demand Avoidance I've been just suggesting things and if he doesn't do them, he doesn't do them.

He also has developed an interest in rubbing his crotch area. I think that on the meds he wasn't thinking along those lines because they decrease sex drive. But he does it constantly now, right beside us or in public. He seems appropriately embarrassed when we ask him to stop but then he starts up again. I always read things like "send him to his room" or "remove him to his room" but he won't go when sent and I can't remove him or move him anywhere he doesn't agree to go. It's made worse I'm sure by the fact that he won't shower. He says he itches there, and of course he does. He also still won't brush teeth and a few are obviously rotting. I've explained all this to his doctors and counselors and I don't know why something more isn't happening for him. It's a big deal because I'm in the class of working poor people, which means we don't get free health care, we have to pay a percentage, and I can't afford to pay the dentist. I'm in danger of losing my home. I haven't been able to work nearly as much as usual because my son can't be left alone. I've actually called the regional center and explained all this and they say it's still going to be 6 weeks for them to start the assessment process. I asked for emergency help and they gave me two phone numbers - the warm line and the family resource center - and one doesn't answer and has a full mailbox and one I've left 4 messages with and haven't received a call back. And not just at holiday time - I started these calls a few weeks before Christmas.

I'm just so confused about what to do.

Really, a lot of the issues you are describing are pretty typical - I highly recommend that you look at the stickied posts on the top of this board. Right now, your job is to try to understand and to do the detective work to find out the whys of everything before you get to work on anything. Get some of the books - I think someone has already mentioned The Explosive Child, that and the Complete Guide to Asperger's Syndrome are another good place to start.

I'm sure you are overwhelmed, but remember that what you are seeing is the result of your son being overwhelmed and being totally unable to express it or do anything about it: he can't find a forum and can't even ask questions because he doesn't know how. He's irritable and explosive and frustrated with everything because he has no way of framing or expressing what he wants, even though he knows that what he says has something to do with it.

There was a recent article about a family with a low-functioning autistic teen. The boy had been slapping himself in the face to the point of injury, and his doctors had told the mother his behavior was due to autism and his general aggression. The mother didn't feel right about it and went to other doctors who understood autism better. Turns out, the boy had a severe ear infection and no way to express that he was in intense pain - so slapping himself in the face was the best he could do. Thank goodness he found a doctor willing to look behind the behavior to see what it meant.

It's no different for a high-functioning child, except that we often grossly overestimate the capabilities of a person on the spectrum when they are able to use language. Your son may have language, but he doesn't know how to use it to explain what is wrong (or probably even that his sense of something "wrong" can be framed in a specific way with language,) and also doesn't know that if he explains you may be able to help him.