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Sylvius
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27 May 2009, 7:14 pm

Ellen,

My tone was perhaps too harsh. I may have been spending too much time arguing with people on the internet recently (about RPG design, mostly), and the writing style spilled over.

Ellen3057 wrote:
To Sylvius:

He has to do the dishes each day because of hygienic reasons and because we have given him this as his one chore. He can't read in the middle of the doing school because he gets lost in time and soon 4 hours have gone by. Then when he gets back to his work he is too tired and does not do the best school work. It is not my rule, it is his behavior that I am reflecting back to him.

Sure, but he can still honestly ask "Why?" when presented with those answers. You need to tie your responses to things he cares about.

When I moved away from home (I was 25), I lived in a one bedroom apartment that quickly filled with garbage - especially pizza boxes. I saw cooking and cleaning and taking out the garbage as unreasonable demands on my time - time that could be better spent playing computer games or reading. And I already spent 90 minutes every day just commuting to and from my job.

So, I moved closer to work (then just a 10 minute walk). I also took out the garbage regularly to prevent the infestation of fruit flies I'd had at the old place (which I left a complete mess - luckily no one thought to put cleaning costs in the rental agreement). And the new neighbourhood had far more convenient access to a grocery store, but far less convenient access to fast food. And thus my life moved slightly closer to normal.

But I made those changes because they mattered to me, not because someone told me to. Your son (I think) needs to have some reason to care about your instructions if he's going to have any interest in following them. And if he sees those incentives as mean-spiritedness from you (you holding his books hostage, for example), they'll look arbitrary and thus will not compell him to act.
Quote:
The problem with reading or playing on the computer all day long is that it does not promote a value to oneself or society in general.

He likely has little interest in society, and likely disputes that you're a better judge of what brings value to him than he is.
Quote:
Although certainly there are days when we do just that, if individually we all just read books or played on the computer, there would be no one to write books or fix ISPs when they went down. Society is a fusion of everyone doing the things that are gifts to them and offering it to the world as their contribution to society - to the people who write books, fix ISPs, write computer games, set up web sites, grow our food, etc.

He's clearly already figured out the free-rider problem. What you say is correct: if no one did any work, no work would get done. But look at it from his point of view. Work is getting done. ISPs do get fixed. New books and games do get written. And all without him doing any of it. Just because he's not doing the work doesn't mean that no one is. He's implicitly rejecting the Golden Rule that he should act as he would wish everyone else to act. And that's a rationally defensible position.

I'm not concerned that you're not explaining things well. I'm concerned you're not explaining the right things.
Quote:
He is hardly in a deprivation chamber. We live in the middle of the woods with all types of wildlife all around us.

In which he is clearly uninterested. You could just as well say you have lots of furniture around you. Or rice. They're equally relevant to his view of the world.

I can't speak for him, but I actually dislike living things. I would rather spend my time away from plants or animals because they're too messy and random. They cause stress and anxiety.

I do like that you're letting him study what he wants to study. I chose my own specialty at University (Astrophysics), and then because I didn't manage my time well or really try at all, I did very badly. But it was that failure that taught me to manage my time better. I saw the consequences of not doing it, and thus had reason to change.
Quote:
It seems as though you have jumped on my frustrations out of defending your own life. Frankly, I think it is wonderful that you have found Epistemology as a passion.

Well, it got me through school, and I found it matched how my brain worked normally, so it was easy. I only apply it very tangentially to my current job - it's mostly useful when teaching people how to use the database I manage (my users jump to conclusions a lot - it's annoying).
Quote:
My point is that I am sure you did not become interested in Epistemology by reading fantasy books all day or playing RPGs all day.

I think I got good at Epistemology doing exactly that. Since fantasy takes place in an entirely fictional setting, each story is like its own self-contained thought experiment.

As to why I actually studied Epistemology, that was mostly luck. After failing at Astrophysics, I had to declare a major or drop out, and I only qualified for one program (Philosophy, based on my having excelled at a single class in formal logic).
Quote:
You had too look outside yourself and begin to explore what might be interesting to you. I don't know how old you are. Since you said that you have been studying Epistemology for 10 years, you must be at least in your twenties . . . or perhaps you started when you were much younger - who knows. All I am sure of is that you had to push yourself out of your childhood passion and find a new, more mature, inquisitive passion.

I just noticed I wasn't displaying my age. I've fixed that (though I fudged the birthdate by a few weeks for the sake of privacy).

I still read fantasy novels and play computer RPGs as much as I can, and I do reread many of the same books and replay many of the same games. To be a self-supporting person, Joshua needs only to find something he's good at, not necessarily something he loves. He already has something he loves.

My tone was still a bit uneven in this post. The first half is also far more on-point than the second.



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27 May 2009, 8:35 pm

I do suggest that you go back to that link I posted and read ALL the posts, not just the first few pages which, as I already stated, give an unsympathetic view. I do not mean to self promote, but I was able to offer advice in that post which was indeed of use. Your son may not be staying home trying to avoid all contact like the guy in that post but if you keep up your current trend of taking away everything he loves then your about to be in the exact same position.


First off, you may want to reconsider your use of Risperadal. That medicine works by effectively reducing the functioning of a person's mind, and limiting their ability to put up a fight. Basically it just makes people more pliable by shutting off the part of their brain which makes them think for themselves. Now if somebody is extremely physically violent, and a threat to themselves and others, then you might be able to justify making them more pliable for their own good. That way they dont end up in a worse situation like prison. But giving somebody mind altering drugs in order to make them more pliable simply because you dont want to deal with puberty and hormones is ill advised at best.

As a male who has been through a similar circumstance, I can assure you that hormones can indeed be a very powerful influence. Also, autistic males have a much higher level of testosterone then the average male, which tends to make things a bit harder. But the way to fix this is to help him learn self control and give him an effective outlet for his aggression. Giving him mind altering medication which can have life destroying side affects isnt a good idea, especially if he has never become physically violent. Doctors should really be more careful about giving prescriptions to such dangerous drugs simply because a guy is having mild difficulty learning to deal with his hormones.

Testosterone, and other hormones are generally low in a young boy. When they start puberty, their hormone levels begin to rise slowly until it maxes out around age 16. The hormones stay high till the early 20s, then drop down to adult levels. The early years of puberty when hormones are slowly rising allows the person to get used to the hormones over time as they increase. It allows the person to develop self control and learn how to handle these stronger emotions as they slowly come in over time. By giving your child Risperadal, you have limited the effect of his hormones. As such, he has never learned how to deal with them, and he has never learned how to control them. When he suddenly came off the meds at age 16 he effectively went from pre-pubescence to maximum hormones in the course of a few days. It isnt surprising that he has become more aggressive and obstinate, he just got the effects of a 3 year's hormone increase without the accompanying 3 years to learn how to control it! You may not be familiar with the effects since you are neither autistic nor male, but I can assure you that hormones are indeed very powerful. I'm pretty sure that if I injected you with the amount of testosterone in my system you would become aggressive yourself. You shouldn't think of your son's aggression as a character flaw when he just went through a massive increase in hormones in a short period of time.


Secondly, find some 'experts' that actually have first hand knowledge with this situation. As you said, you have consulted with:
1. The whole mental health community (six psychologists, two psychiatrists, and one neurological psychologist)
2. Your husband
3. A listserv (Mothers with Asperger Syndrome Kids)
Now think, how many people on that list actually have autism? I dont mean to be rude, but your advice is coming 100% entirely from non-autistic people. It should be clear from the previous posters (who are themselves autistic) that the advice you received is NOT A GOOD IDEA AT ALL! It may have been well intentioned, but it isnt a good idea. As you said, you dont speak aspie, and you dont understand aspies. What makes you think that other Non-autistic people are any better at it then you are?


Thirdly, you seem to be focused on all the wrong things. Just stop for a second and think about what it is that you want from your son. If you are a good parent then your goals should be something like:
1. I want my son to be able to take care of himself physically. I.E. make his own food, do his own laundry, etc.
2. I want my son to enjoy life.
3. I want my son to help society as best as he can, either by working, or volunteering.

Now as for him taking care of himself, let him do it his own way. I'm just looking at your list here:
*Wake up
*Shower, brush teeth, get dressed
*Eat Breakfast; take meds
*Do activities (whatever is in store for that day - usually not much)
*Eat Lunch
*Do activities (whatever is in store for that day - usually not much)
*Eat Dinner
*Do Dishes
*Take shower, brush teeth, take nighttime meds
*Go to sleep before midnight

I do wake up every day, but then again who doesnt, I'm pretty sure your son is capable of being conscious.
I do brush my teeth and get dressed, but unless I am going out for the day I usually dont shower. I mean its just me in the apartment alone, who cares if I dont shower, so thats a fail.
Eat breakfast? Well I certainly dont do that in the morning. So thats a fail.
Do activities? What activities are you referring too. What seems simple for you may be harder then you think.
Eat lunch? Again, I would have to say I fail at that too, usually my first meal of the day isnt until 3pm.
Do activities? Again, it really depends what you want.
Eat dinner? Maybe, sometimes if I am hungry. I only eat when I am hungry, I dont have a set meal time. So if your definition of dinner is to eat food with other family members then I would fail that too.
Do dishes? I could see that being a reasonable goal, but let him do it the way he wants to.
Take a shower at night? Again I dont do that so fail there.
Go to sleep before midnight? maybe, once a week on occasion I will do that, so fail again there.

So far I am 2/10. And yet surprisingly I am still capable of living by myself and taking care of myself. You seem to have an idea of things like when he should eat, and what time he should sleep, and also how he should spend his free time. That isnt your call to make. Let him decide when, and what he is going to eat. He is old enough to prepare his own food and eat when he is hungry, you dont need to have him sit up at the dinner table like he is 3. Making him miserable and forcing him to do things the way you want when it doesnt really matter wont make him more self sufficient, it will make him suicidal.

As for your son enjoying life, well I must say that your current actions are certainly NOT conducive to that happening. Allow me to assure you that being autistic is NOT easy. I spent the majority of my childhood in my room playing computer games, and reading books, and surfing the web. And you know what, it kept me from going insane. If i didnt have my own solitude and a place to escape to I probably would have committed suicide long before I reached your son's age. Your son isnt just staying in his room avoiding the world because he is selfish, he is staying in there because the world isnt a nice place to be for an autistic person. It is self defense. When you take away his retreat that is basically like taking a turtle's shell off and setting it out in the wild. You can say 'I just want him to enjoy life outside of himself', but thats like removing a turtle's shell and saying 'I dont want to see the poor turtle weighed down with that heavy shell'. The turtle needs that shell in order to survive, and likewise your son needs his solitude and his escape. His solitude is not a problem, it is self defense, and when you take that away from him you might as well be stabbing him in the leg and then telling him to get over it and go run a marathon.

As for your son contributing to society, well he is already taking college courses and he is years ahead of schedule, so I think your son will probably be able to get a good job some day without your needing to take away all his stuff.


Now I realize that I probably come across as a bit angry, but you have to realize that it is actions like these which made me suicidal when I was younger. If you had a really big problem like your son refusing to do anything at all like work, school, or interact with people in any productive way whatsoever (and you were 100% convinced that is wasn't stress related) then yes, I could see this being a correct course of action. But as you said yourself, your son is very intelligent, and is taking college classes, and is well on his way to becoming a functioning member of society. Your only problem seems to be that your son spends too much time in 'never never land'. Forgive me for saying this, but who are you to decide what is and is not an appropriate use of recreational time? Does he go to school? Does he learn what he needs to learn in order to have a career? Then thats all he needs to do. Stop deciding for him what is and is not an appropriate way for him to enjoy his life, and please realize that ripping of his shell isnt going to help him, its only going to cause massive psychological wounds.



Ellen3057
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27 May 2009, 9:15 pm

Jemir:

Quote:
i have had OPERANT CONDITIONING done to me before. There are many types

there is a positive reinforcement=putting something in your son's environment that he does like so he can do the action you want

negative reinforcement=takibng something out of your son's environment that he wants out, and that way you can get him to do the action you want

punishment=putting something in that your son doesnt like or taking something out that he does like.



Was this stuff terrible? When I first heard of Cognitive Behavior Therapy I said WHAT - NO WAY YOU ARE DOING THIS TO MY SON!! !! I am not going to let him be a in Skinner's Box! Yet, getting no where with Joshua, that is exactly what my husband and I decided to do.

I have tried positive reinforcement - my basic belief of how to parent well - and nothing.
I have tried negative reinforcement - and nothing
Then we (my husband and I agreed) tried punishment - reaction. I felt so "dirty" - like I had just done the most disgusting thing to get our son's attention. I still feel yucky about what we did.

What have you learned about OPERANT CONDITIONING that you would like to share with me (the whole forum). The Psychiatrist said to add things back into Joshua's life after a short period of stable compliance. We set the bar at 80% of the basic things in life. He is just about to finish day 2. It has taken two weeks of him trying to work around our set of rules, he has finally decided that perhaps it is not so bad.

The big problem was that he would start to comply, and we would give an intermittent reward of Ben and Jerry's, or a movie, or candy... and then he would promptly return to total rejection of our "rules" saying that he worked hard for two days and now he was resting for three days. Now, I never expected a completely upward movement, but an upward slope, followed by a plateau, followed again by an upward slope. The lengths of the upward slopes was not important, and neither were the length of the plateaus. What I got was a sprint followed by a complete quick collapse and a l-o-n-g period of waiting, and then another sprint; and so on.

My husband and I felt manipulated since he was reading as much as he wanted, playing on the computer 1-2 hours a day, and basically only following the basic rules 3 days a week - and getting a reward. My husband and I were well trained.

Finally we stopped the computer. Then came the work arounds. Not compliance, not negotiation, but sneaky behavior - and fierce anger (to be fair he was off his meds). When we asked for compensation for the time he made us to use up fixing up what he had broken - this was to be done by walking (getting exercise). Joshua's brother pointed out to us that what we really needed to do was to make Joshua do work for us that we would have needed to do, but for him compensating us - oh well, live and learn. Still Joshua was like - "No f-ing way". Then we took away the books, and still more working around and sneaky behavior.

It was not until we told Joshua that we were considering putting him in a residential facility because I was so incredibly ineffective and he needed effective parenting, that he decided we were serious and he was going to get with the program.

We are now day 2 of three days to get back some computer time. We picked the computer because he can play for an hour, but needs to read the whole book (2-3 hours for 500 pages). This way he would get the reward quickly and we could plan the time on the computer so that he doesn't backslide. Although my husband and I haven't decided when he can start to read fantasy again, I am of the opinion that 7 days of playing on the computer and 80% compliance would earn him book time. The time would be shortened, the better he got at balancing his needs with our responsibilities.


Jemir:

I am really sorry that you got such bad reactions from people. I don't like most people myself because they are mean, unpredictable, and underhanded. I don't understand the rules of life and I am generally an outcast. Which is just fine with me. The only thing is that I still would like to have friends, where both you and Joshua don't seem to want or need that. Perhaps you guys are lucky. Also like you, Joshua is very kind and sweet. Joshua is also very naive.

My older son never felt like he fit in until he went to college. He is still 2 years younger than everyone else, but at least he finally is at an academic level where he can talk to people. Frankly, the older I get, the more I realize that most people are faking it and only looking good. Most people are not anywhere as nice as they like people to believe they are.


Finally, Jemir, please, please tell me why does he ask these questions? And how can I get him to understand answers or to be put more PC, how can I explain the answers so that he can understand?

Thanks for your help. I really appreciate it. I look forward to learning about your experiences with Operant Conditioning, and how I could communicate with Joshua.

Thank you again - so very much.



Ellen3057
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27 May 2009, 9:45 pm

Sylvius:

Thank you for your story. I will have Joshua read it, so that perhaps he can understand from an Aspie's POV.

Quote:
The problem with reading or playing on the computer all day long is that it does not promote a value to oneself or society in general.

Quote:
He likely has little interest in society, and likely disputes that you're a better judge of what brings value to him than he is.


I know that he has little interest in society and does indeed dispute that I am a better judge. I have worked hard in finding things that he would like - like the therapeutic horseback riding, last year working with Adaptive Sports Association, shelving books at the library, etc. Joshua likes to volunteer and looks forward to working - which he will be doing shortly.

Now I know that you have autism, so I understand that you come from a different point of view than I do, and that is why I am so interested in what the posters have been saying - because I really want to learn "that other perspective". As I have said before, I don't want Joshua to be me. Hell, sometimes I don't want to be me. I want Joshua to be Joshua. I just don't want to have him lock himself into himself. As I am sure you are aware, autism is all about going into yourself. The further you go, the happier you might be, but the less functional you become. There is a balance.


I really do get what you said that "I might as well have said that he is surrounded by 'rice'". I know. He doesn't like to go outside. When he was little, my husband and I said to Joshua as he was reading "Why don't you go outside and play. So 10 minutes later we looked out the window and there he was reading a book outside. It was cute, but not exactly what we meant, but it was what we said. We laughed.


Joshua really likes animals, especially cats and horses. He does not like dogs. In fact, at the horse-back riding place he goes to he was sitting on the wheel of a trailer and the horse and Joshua were in an embrace for about 5 minutes or more. It was endearing. However, Joshua cannot feed the cats as he gets the urge to vomit upon the smell of the cat food. I get it. So Joshua doesn't feed the cats. Big deal. Joshua also doesn't like having to deal with the compost or wet garbage. I understand. He will have to get over some of this if he lives alone, but I get it and I don't make him do these jobs as I know they are revolting to him.


(These double quote things are too difficult to me so excuse my lack of techo-savvy)

I am really glad that you were able to transfer some of the knowledge from fantasy to life. Joshua's brother has told me that he now believes that Forgotten Realms is really not good literature, and there is much better fantasy than Forgotten Realms. - But I digress.

Joshua has showed me that he does transfer some of the knowledge of fantasy (D&D) to the world. A couple of months ago he said "You know what they call a character that has all intelligence, and no wisdom and no charisma... an absent minded professor". He was really telling me about himself. Then last week we talked about what kind of character I would be - he decided I would be a Bard - for which his brother said "Mom, that's because Bards are kinda useless." :lol:

FYI: Thanks for the date of birth (approximate) and for the kind words you interspersed in your letter. I appreciate your input - Really!! !



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27 May 2009, 10:43 pm

Tracker:

I did go back and read most of the posts from the 17 yo who wouldn't leave his room. I got through page 7 and then I took a break. I found all your posts to be very insightful and the posts in general to be helpful. Thank you for pointing them out to me.

Regarding Risperadal, Joshua was put on it in January and got off sometime in March. I just put him back on it 10 days ago. So total Risperadal days probably are less than 60 with a total number of mg less than 40 - as we adjusted his dose to get it right. Currently Joshua takes .5mg. Joshua and his brother both went through puberty so incredibly fast that I could literally watch their faces change, their bodies grow, and hair spring from the pores of their chest and face. His brother was fully developed by the time he was 13, and I think Joshua was finished growing around 14 - although his beard is almost full, there is a bald spot under his chin. So I promise you that I did not stop Joshua from experiencing his puberty, nor the ebb and flow of testosterone.

What happened was that Joshua finally began to talk around the same time as puberty and his "voice" scared him. So please don't jump to conclusions based on your own experience. Everyone is different.

One thing that might help you understand me a little - so that you give me a little slack -

I was born into a terrible family full of narcissists. No one ever answered any of my questions. And reality was never acknowledged by anyone. I grew up acting out sexually looking for love through sex. Then I married a verbally and sexually abusive man who eventually fell in love with his co-worker after I put him through his Master's Degree.

Then I married Joshua's father who was bipolar and became psychotic. When Joshua was six months old, his father shot me three times and finally turned the gun on himself. This was after more than a year of terrorizing me and Joshua's brother to the point that I was unable to figure out how to take a shower. I eventually had to live with my parents. It was in my parent's house that I was shot.

I have Post Traumatic Stress Syndrome and cannot tolerate yelling and fighting. I get so incredibly scared. Getting angry upsets Joshua as well as he has told me that he feels out of control. He also has some PTSD from all the chaos prior to his father's death. Joshua's brother has more symptoms of PTSD than Joshua and less than I do.

My current husband is the only father Joshua and his brother remembers or even wants to know about. My husband also has problems with too much anger in the house, so we all try to keep the temper of the household on an even keel.

I made a vow to myself to raise my kids to the best of my ability in order to make sure that they became good, kind men. Joshua was not diagnosed with Asperger's until he was 13 years old, even though I had asked every professional that I could find to help me understand him. He had Asperger's from birth.

At the beginning of high school, I knew that the local (only) high school was going to be too overwhelming to him, so I took him out of a regular brick and mortar school, and he went to school online. He excelled at this and graduated in three years.

I have respected Joshua and his needs throughout his life. It is only now that he has graduated from High School and is entering the next phase of his life, that Joshua has started to tell me to bud-out and at the same time he needs me to help him with life at school.

I worked for six months to get him a peer mentor to help him navigate the college environment, because it is really not appropriate for me to be there. And Joshua has told me that he doesn't want me there. In the meanwhile, he has little Executive Functioning Skills, and had trouble because he had to print out a worksheet and never told me that he needed money, or to remind him, or really anything. The disability office was very ready to help, but Joshua couldn't ask; hence the peer mentor.


Regarding only asking NTs. That is right. That is why I am here. I didn't feel good about what I did and I wanted a different viewpoint. This whole thing took place within the past 18 days. FYI, two people from the listserv did have Aspergers and they did not voice such harshness. One person even said that they were glad that their mother took away the fantasy books because that was the catalyst to beginning her life and that she had wasted so much of her time. So again, everyone is different, and I am here because I didn't feel good about what I did and I wanted different opinions - why else would I subject myself to such scrutiny!

Quote:
Thirdly, you seem to be focused on all the wrong things. Just stop for a second and think about what it is that you want from your son. If you are a good parent then your goals should be something like:
1. I want my son to be able to take care of himself physically. I.E. make his own food, do his own laundry, etc.
2. I want my son to enjoy life.
3. I want my son to help society as best as he can, either by working, or volunteering.


Right on!

----

I am sorry you failed my list. Perhaps you live well in the world. I don't know. And I am not going to judge. That is not my place. And I do get your drift - that perhaps my list is nonsense. Maybe? Maybe not?

----

Quote:
Now I realize that I probably come across as a bit angry, but you have to realize that it is actions like these which made me suicidal when I was younger. If you had a really big problem like your son refusing to do anything at all like work, school, or interact with people in any productive way whatsoever (and you were 100% convinced that is wasn't stress related) then yes, I could see this being a correct course of action. But as you said yourself, your son is very intelligent, and is taking college classes, and is well on his way to becoming a functioning member of society. Your only problem seems to be that your son spends too much time in 'never never land'. Forgive me for saying this, but who are you to decide what is and is not an appropriate use of recreational time? Does he go to school? Does he learn what he needs to learn in order to have a career? Then thats all he needs to do. Stop deciding for him what is and is not an appropriate way for him to enjoy his life, and please realize that ripping of his shell isnt going to help him, its only going to cause massive psychological wounds.


Tracker, I am sorry, but you do come off as very angry. Thank you for sharing that your childhood was very painful as people did not understand you and you felt suicidal. That is terribly sad that your parents (caretakers) did not care about "you" but more about how well "you fit in". I am touched that you feel so protective of a young man that you only know through his mother's eyes. I promise you that is not the situation here. Joshua has many hours (probably too many hours) to spend by himself. He probably spends 6 hours a day or more to himself. He does not have the skills to become employed - that is what we are working on. He is 16, not 20 or 25. He does have the skills to cook, shower and help with the laundry. He is a great driver, although he won't get his license until the end of August. He has an electric scooter for him to feel like he has more autonomy. I know that the bedroom is the preferred place, but getting around on your own is kinda neat too - huh? :)

If I did take his "shell off" (I am not sure I did, but accept the concept), I did not tell him to go out and feel safe. I said, please try this other "formless" shell that has a little more room to grow, and you only need to use it when you want to. We will reevaluate the shell in a little while. Meanwhile, please try to see if it feels less constricting.

Tracker, I am not an ogre. I care deeply for Joshua. That is why I am here. I want to hear what you all have to say and learn other options.

Mostly what I have heard is that many of you have been deeply hurt and feel naked without your books. I am so sorry. I am basically a nurturer and would love to have helped you all adjust to a world where you felt comfortable in a safe, gentle way. Yes, I admit that taking away his books abruptly was harsh, but give me some credit.

While I am not a person with Asperger's, I am not a social butterfly either and have always believed that people are allowed to have their own destiny. I was losing my son, and needed to get him back.

After 18 days without his books, he is beginning to like new genres. He is reading Tony Hillerman, enjoying books of political cartoons, and is now reading a very interesting history book. He started with fantasy in 1st grade and has never tried any different genres. Like I said, I am not ripping off his shell, I gave him a formless one that is a little bigger and asking him to see if he can be comfortable in it.

Psychological wounds are the very last thing that I want to give him. I am sorry Tracker, that is what happened to you.



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28 May 2009, 12:12 am

I'm sorry, I probably came on a bit to strong. I didnt mean to upset you. I admit that I was never shot before, but I do have plenty of experiences living with a narcissistic mother, and I guess it led me to assume the worse. Please do realize that I am not trying to blame you, I just tend to get a bit defensive when I hear stories like this.

The reason I post on this board is so I can prevent other children from having to go through what I did.

Also, perhaps I should clarify about the Risperadal. The medicine doesnt do anything to affect the amount of testosterone your body makes. As such you will have puberty normally. I just meant that the medicine reduces the aggression normally associated with the increase of hormones. As such, somebody who doesnt take the meds will be able to feel themselves becoming more and more aggressive over time. And as such they will be able to learn to control that aggression slowly as it builds. But when you suppress that natural aggression with drugs, the person never gets to feel it growing. And as such, once the drugs stop, there is a sudden increase of aggression without the normal amount of time to get used to it.

As such, your son is more likely to become aggressive when his meds wear off because he isnt used to the effect of the increased hormones and the resulting increased aggression. He has never had to control this much aggression before because the meds were doing it for him. Its not as though his hormones were suddenly going up once he got off the drug, he just started feeling the effects of those hormones suddenly and without the proper time to get used to them.

Please do realize that I am not trying to blame you or make you out to be a bad person. I obviously cant know all of the details in your son's life. This forum should be a safe place to come and ask for help and I apologize if I hurt you with my comments. Please do stick around and learn what you can. Those of us who have been down this road before may be able to help out in some manner.



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28 May 2009, 9:54 am

Call me crazy...but...it sounds like your son is actually doing pretty well for a 16 year old? He is finished high school and has several college credits already under his belt. He plans on continuing with his education. He is willing to work at a volunteer job. He has learned to drive and is about to get his driver's licence.

Is it possible that if he continues progressing with those "big picture" goals, you don't have to worry so much about all the small stuff? If he is attending college, learning to drive and volunteering maybe he just needs to retreat into his own world for his downtime? And it's OK for him to not shower, or stay on the computer for long periods of time if he doesn't have to be at school or his job? Would it be OK just to let a lot of those smaller things go?

Or perhaps I have completely misunderstood. I do that sometimes. :wink:

And you don't sound like a horrible mother at all...very concerned, very invested and very frustrated. You've obviously been through some really tough times in your life, as have your kids. I hope you can find a happier balance for you all.

(BTW if I don't have to leave the house I stay in my pajamas all day! And believe it or not, I am a fully functional adult. :lol: )



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28 May 2009, 9:59 am

Tracker:

Wow! Thank you for your acceptance. I know that you are a pivotal person on the web site - that many people feel you are one of the best voices for the site. So your acceptance is very important to me. I am glad that you felt that I am beginning to earn it.

I appreciate your explanation of Risperadal. There are many families that can handle the natural aggression that comes with male adolescence. I am just so scared. And Joshua is able to come up with words when he is on the med whereas when he is not on the med, he simply cannot bring the words he needs to his brain and ultimately to expression. It is with the Risperadal that Joshua really can communicate his dissatisfaction with us rather than stomping upstairs and feeling suicidal. I am only looking to help Joshua express himself and for me not to get scared.

And thanks for the invite to stick around. Truthfully, I was ready to pack it in. I want help, but I don't want to be dog-piled.

Again, I really appreciate your acceptance. It means a lot to me.



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28 May 2009, 8:03 pm

Annotated Alice:

Quote:
Call me crazy...but...it sounds like your son is actually doing pretty well for a 16 year old? He is finished high school and has several college credits already under his belt. He plans on continuing with his education. He is willing to work at a volunteer job. He has learned to drive and is about to get his driver's license.


Yes Joshua is doing very well. And I am very proud of him for all that he has accomplished - and that he is willing and able to do. He has matured a great deal from age 13 to now. I never thought that he would ever get this far!

I just get very scared when I see him go deeply into himself. Not that it is a bad thing - heck I need lots of downtime when I have been out and about talking to lots of people - it is just I get scared that he will never come back out. It seems like he is so incredibly comfortable there and I know that there is possibility that left to his own devices, without a routine, he will disappear and I will never see my son again.

It took so long to get him to talk to me. It took so long for him to want to interact with anyone. He would have dropped out of school had I not pulled him out of the local school district and put him into a public online high school. He was so bored, and would bring 5 books to school just to keep himself busy. When I asked the teachers to give him work at his level, they refused saying that he was fine and not bothering anyone.

I love my son Joshua. He is sweet and kind and gentle and all the things that I wanted, but I just don't get to see to much of it because when he is home, he feels comfortable enough to completely retreat. I know that I should trust myself, but I get scared.

Please all of you, do you every go into yourself and just not come back out? I mean is my fear based on what could happen - or just one of my many fears that simply do not exist?

I would really love to know.

Thanks for your contribution "Annotated Alice"

--Ellen

Oops, PS. I worry about him showering because he smells so bad due to the hormones, and he has really bad acne. I don't make him shave (he does have a full beard), but I don't want young women getting revolted by his odor either from his arm pits or his mouth, and I want to make sure that his skin does not get acne scars. Otherwise, I am really not a hard-ass.



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28 May 2009, 11:44 pm

Ellen3057 wrote:
I really appreciate your acceptance. It means a lot to me.


You are the parent of an autistic child, and thus the person that this board was made for. If anything I should be asking for your acceptance prior to posting here. After all, I am the person giving the best advice I have, and you are the person receiving. And in the typical setting, the receiver must accept the item being given as adequate, not the other way around.

Please do not take my words as something special. I'm not sure that I am a pivotal person here, but even if some people think that, it doesnt mean that my opinion is more valuable or more correct then others'. While I do try to help out as best I can, I am still human. As such do not give perfect advice. I do hope people read what I post as it is designed to be useful, but you shouldn't take it to heart without first thinking it over and seeing if it works for you. Remember that you know the situation better then I do, and my advice may often not take into consideration all the details that are going on.

I'm sorry that I made you feel like packing up. It was short sited of me to be so critical of you when your intentions where not malevolent. Please do accept my apology.



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29 May 2009, 12:57 pm

gina-ghettoprincess wrote:
Taking away his interests is a horrid thing to do. I realise that it doesn't seem like that to you, an NT, but to him, AS, it is torture.

My mother tried similar tactics with me a few months ago, because I was scared to go to school. She only let me on the computer for an hour each day (nowhere near enough), took away my TV and DVDs and books, and justified it with a bunch of stupid illogical vague arguments. All she acheived is making me hate her with every fibre of my being. All she left for me to DO was to sit there hating her. With everything relating to my interests locked in the loft (except a few books and my diaries, which I had hidden under the bed), I spent my days basically just thinking about suicide.

Anyway, back to your situation...

His questions are not stupid. What IS wrong with spending his time doing things that interest him? Answer his questions, and answer them good. Never say things like "because I say so" and "that's life". Those are some of the worst phrases ever.

Respect is a two-way street, remember. Parents shouldn't just demand respect while giving none in return.

/from AS teenager's perspective.


My parents used similar tactics on me as well when I had problems. I can remember one summer in particular when they took everything away from me, which included TV, radio, and anything else I enjoyed and only allowed me one thing, to go swimming when my sister did, and that wasn't a choice. I wasn't even allowed to have an opinion on it, they said it would build me up into a proper human being, which never made sense. They would constantly tell me and other how much I loved swimming, and even threaten me if I said I didn't. To them, swimming was loved by all and it was not possible to have any feelings for it less than reverence.

My sister loved to remind me that I wasn't allowed anything because I was bad and how she was going to own me for the rest of my life. My parents also liked to remind me of how perfect my sister was and how I should aspire to be more like her, yet they never treated me the same was as her. They had no trouble barking out orders to me and expecting me to do as I was told, while they wouldn't even think of telling her to do anything, she was asked what she wanted to do. If she didn't get her way, she'd run to her room and slam the door, while if I got mad, I'd get screamed at for having a bad temper and how that was going to get me into alot of trouble one day, so I had better start being good and smiling more. If I pointed out the discrpencies in how they treated me and demanded the same consequences for my sister, I'd get told things like "she's a girl" or "that's just how she is," or would screamed at and called a smart mouth.

I never quite figured out what I supposedly did wrong, other than get picked on by other kids for no reason and wasn't able to cope with it, or simply having my own likes and dislikes(not liking swimming, preferring to stay in rather than go out, etc.), and maybe the fact I just wasn't my sister.

Did I learn anything from all of this? Not really, they never got rid of my preference of staying in over going out, the never got me to love swimming over all else, or to worship my sister, all they did was make me resent my parents and my sister and dream of the day when I would get away from all of them and be free to just live life on my own terms. I don't talk to my mother anymore, and seldom to my sister, which suits me fine. I'm now married to someone who understands and takes me as I am, rough edges and all.

However, the anger I feel towards them will not go away, and I suspect this will happen to the original poster. Her son may learn some things, but he will not respect his parents. He may be the child who leaves, never calls, never wants to see them, etc. if this keeps up. They are doing to him what they did to me, take everything away and cram other things down his throat.

This kind of stuff does not work, pure and simple.


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29 May 2009, 2:35 pm

Ellen3057 wrote:


Please all of you, do you every go into yourself and just not come back out? I mean is my fear based on what could happen - or just one of my many fears that simply do not exist?



I can only answer this from my own very limited POV (myself possible but not dxed Aspergers and 2 sons both dxed AS who are 9, I am sure things are much harder at 16!), but I absolutely need to withdraw into myself at times. My sons even moreso. I can choose/force myself to "come back out" for things that I deem important, such as meeting my children's needs as a mother, doing important household things etc. My sons are the same way, if they deem something important they can engage in the new activity (or at least try to). If they do not see the value inherent in the activity, then trying to force them to do it is very difficult (for them and us). Obviously as a parent, you have to require certain things (education, basic safety and hygiene, certain social norms), but when you look closely at the balance between your child's need to be alone and follow their own interests (and this is a need, like food and water!) and your need as a parent to see that they arrive at adulthood with education and skills for independence there is actually a lot of leeway.

From reading posts on WP I see that many people with AS had parents that tried to force them to comply with arbitrary social standards "for their own good", but that the constant stress and frustration of trying to meet these standards caused huge anxiety and anger. Sometimes destroying the person's self esteem and the relationship with their parents along the way. Are they better off as adults now? More functional? Happier? Less "autistic"? I suspect not. My own parents pushed me so hard that I had a total breakdown at the age of 14. I do have excellent social skills now, but have never completed University or had a good job, because my anxiety is huge. I am a very good mom, but usually because I choose to do the opposite of what my parents did. :wink: And FYI my mom was not a bad person, but came from an abusive background and had her own anxiety and huge perfectionism that caused her to push, push, push, nag, nag, nag, punish, punish, punish (my dad as well). In the long run, all it did was make me angry. I could not meet their standards (or the school's or the church's). I felt absolutely wretched about myself. I grew to hate them and myself. This led to all sorts of ugly stuff from drugs to suicide attempts.

I just think that most kids with AS need more love and understanding and room to be themselves. I am not saying to abandon every expectation and standard. But you have to narrow in on what is really, really important, and let the rest go. For example at 16, if you have explained to him your concerns about his acne, scarring etc. can't he then make his own choices about daily showering? It is ultimately his body and his choice.

As far as "never coming back out", I don't have to worry about my sons retreating too far into themselves and not coming back during the school year (or myself for that matter). The schedule of getting up and going to school everyday, keeps them challenged and learning, and so during their downtime they need me to just back off...let them draw quietly for hours, play video games or refuse to talk for a long period after school. During the summer, after a few weeks of downtime they can get to the point where they are retreating too much. If we stay at home all the time, all of our anxiety skyrockets when it is time to go out and they get harder and harder to pull away from their activities. When this starts to happen (or ideally just before), I know that I have to incorporate more structure...more social, more exercise etc. I think this really depends on where kids are at on the spectrum though. I know another mom whose son has classic autism and it is a daily struggle to get him to engage at all, they must keep pulling him out of himself daily in order to help him learn anything. My sons are highly functioning Aspies, they will engage in more social (talking to each other, or us, a weekly phone call with a favourite aunt, the occasional playdate) on their own, and take on a variety of activities related to their special interest. In other words, they are pushing themselves every day, in ways that I may not even notice. When we do have to push, we try to do it very gently and respectfully, and as many others have mentioned, whenever possible, use logic to help them see the value. The funny thing is that sometimes when they can't see the reason to do something, and I look closer at it...there really isn't a good reason at all. It's just my own social conditioning telling me it must be a certain way, when really, does it have to?

Anyway, I suck at advice and forums generally. My hat is off to people like Tracker who can be so lucid and organized with their communication. I am not sure if I have quite said what I was trying to, or if it is helpful or not. I just hope you can enjoy who your son is as much as possible, without feeling like you have to worry about/push him all the time.



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29 May 2009, 3:37 pm

Whatever problems you are experiencing with your son, you have done some things very well or else Joshua would not have graduated high school with 12 college credits at the age of 16, even if he is brilliant. You also deserve full credit for coming on this board and opening up to aspies themselves. You are clearly a very dedicated mom.

I just registered here in order to contribute to this thread because my son is also an extremely bright aspie, who is now completing his doctoral thesis at a young age. I am also an aspie, who was academically gifted and, of course, a problem child (to say the least!). Also, I never really bonded with my mother, although she was a wonderful mother and would do anything for me. I hope my comments will be useful, but every aspie is different, so read with that in mind.

"Structure" is great, and often sorely lacking for younger children, especially during their preteen years. However, when children (aspie or NT) reach 16, parents need to temper their demands with a lot of respect, especially with aspies. Tracker is on the right track (pun intended) in this regard - ignore so-called professionals or others who suggest otherwise. Positive reinforcement, respect and encouragement is often the only method that works, and then it works best if it is sincere. Gentle pushing and direction is OK and often necessary, and you should be pleased that you have got him to do two volunteer jobs, but avoid as much as possible antagonistic coercive methods when he digs in his heels.

I should add that by positive reinforcement, I mean words of praise and kindness, or perhaps once in a while some non-prenegotiated treat along with the words of praise. I know the idea came from professionals, but in my opinion rewarding a 16 year old with ice cream or a movie for taking a shower is virtual insanity. No wonder the young man is angry and uncooperative. Personally, I would never even reward a four year old in this manner. Might use the technique to train seals for the circus though.

I expect that you already praise your son for his academic accomplishments. Do it even more and push him hard to even greater accomplishments. Tell him every day how proud you are of him, and engage him in discussions about his academic interests and plans. Try to get him to establish direction in his academic pursuits. If he is truly brilliant, this can be his ticket to a happy and successful life. Try to make your son feel responsible for his own academic success. If he feels sufficiently proud of his marks and school work, he will not want to read until his homework is done satisfactorily, or will read for only a short while and then complete his work.

You suspect that some of your son's questions are manipulative. I am sure that most of them are, or that he his just trying to get you going. Don't worry too much about his questions. Discuss and ask his opinion, and laugh in a pleasant, kind way and tell him that he is smarter than you are so he can perhaps figure it out better than you can, or can do research and find a better answer than you can provide. Do everything you can to bolster the kid's self-esteem and sense of personal responsibility and accomplishment.

You say that you are not meeting your son's needs. I am sure that my mother thought the same about me. However, it wasn't true. She faithfully cooked my meals, washed my clothes, even made my bed, and would have been there for any emergency. I will be forever grateful, although I didn't listen to a word she said (my poor mother!). I am sure that your son appreciates you more than you realize, but don't spoil it with now with oppressive strong-arm methods.

I think you have already realized that it was not a good idea to take away his books. Encourage him to read good literature, including the classics. These will help enormously with his future studies and subtilely teach about the real world in a way that fantasy doesn't always do. Computer games are, of course, a waste of time, but I would try to limit the time spent on them without using excessive coercion. If you haven't yet done so, I would at least give him back his non-fantasy books now, or ensure that he has good books to read if wants to read.

You have done good work getting Joshua two volunteer positions and a friend. I know that it is frustrating for you and you desperately want him to learn to take the initiative in these matters, but he may not yet have it in him to do so. Seems irresponsible, but it is part of being an aspie. As Tracker said, try to reason with him and explain the importance of social norms and engaging socially, rather than forcing him. A little forcing is OK and probably necessary. It might seem like you are making no progress, but as others have said, when he is on his own he will likely then understand the importance of matters such as hygiene if you have explained their roles in society. If you are like many NT parents of bright aspies, you are constantly sending the message to your son, subconsciously or not, that you are fearful for his future and that you don't know where he will end up. Both you and he might be under-estimating what he can accomplish academically. Have confidence that he can and will succeed brilliantly, and try to make him believe this, too.

Finally, you asked about sending your son to a residential facility, and I didn't see any replies. Your son, and all youth, desperately need to succeed at something or some things. If your son can succeed at a first-rate college/university, I would send him there if you are able. He could live in a dorm and have a meal plan so he wouldn't need to cook. Could he cope socially, and would he take his studies seriously without getting sidetracked? Does he have an interest that he could study? The best you could do for him now might be to instill in him confidence and the belief that he can be among the best, and get him excited about attending and doing extremely well. A frequent problem with aspies is lack of confidence and self-esteem.

I expect that Joshua is unable to complete your simple list of tasks because he doesn't want to, not because he can't. He is rebelling against the list and your demands. Joshua's rebellion might be exaggerated, but is common among all teenagers, aspie or not. If the young man can cope, getting out of the parental home could be the best remedy. Also, you and Joshua are now engaged in continual struggle and even if you recognize this, it might not be easy to break the cycle without a change in routine.

As with the others, I don't know Joshua so am unsure how much help this is. I do know what seems to have worked for one very academically capable aspie.



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29 May 2009, 3:39 pm

Taking away his books and other stuff was the worst thing you could do. You have to think of those as destressers.
Don't sweat the basic stuff. In fact forget about it fot now. People within the spectrum have executive processing issues, if we forced to focus and stress to much on the small stuff, we sometimes are to stressed to do the important things.

My advice for meals, is keep stuff you prepared or stuff he can make around, and let him eat on his own schedule, not yours. Being self suffecient means learning how to do things on one owns schedule. Get stuff he likes to eat and show him how to make it, so he can do it on his own on his own time.
Don't worry about the hygene, just remind him and tell him why you are reminding him.

Stress school. Set up a time of the day he should study, but back off his personal study habits. The one thing I learned in college is I do need little breaks, don't be critical of those breaks. He needs to do this his own way, which means staying out of his way.
Schedule a free time/decompress time. Let him do what he wants to then.

What I see here is you are sweating to many of the small things which is causing tension and him stress and anxiety. Focus on the big things and let him do his own thing. The big thing here is college and learning how to work (volunteering is a good idea), executive functions are not as important as people think. We are forgetful and don't do well, let them slide, alot of the problems are probably coming from you over empasing them.
Secondly, he is going to be isolated at times but you have to remember, thats okay. Breaking him away from his interests and isolation at times is detrimental, and is not going to make him any more higher functioning.

So here is my advice. Focus on only the big things and only a few at a time, and let him drive them. From what I can tell there is three big things 1. College, 2. Work/volunteering and 3. eventually moving out (let me suggest college is good for this too!). It is best to encourage the big things, and not to sweat the small stuff. Don't bother arguing, because if you ever watched the big bang theory, its useless, if necessary let him argue with himself and walk away. He is not manipulating you, and that is part of your problem is thinking he is and coming down draconian which will only create more problems and be harmful to him and who he is.

My advice is to stop the ripisidal. Focus on the big picture, not little things. And honestly be permisive, it takes us longer to adjust and he is not even 18! If you are permissive, let him have his outlet, and not focus on the little executive functions, and let him do his own thing, he will probably come into his own if you are patient. Just remember, he is not being manipulative, he is just being himself. For some of us being functional and being social are two different things. The truth is alot of what you are doing is wrong and has no excuse, especially the drugs and the taking away his stuff. You revealed alot of your problems, part of which is you need to realize that AS desire for isolation is sometimes needed. The truth is you need to think things through differantly, because so far everything you are doing is wrong.

My advice is to watch big bang theory and the character sheldon. You are going to have to accept his habits instead of confronting him. The problem I see here is you are to confrintational over things that matter to NT, but don't mean much or are needed for indipendance for somebody on the spectrum.



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29 May 2009, 7:26 pm

Gah, I hit the enter button twice by accident and submitted early.

Give me a little while to finish writing my post and then Ill put it up here.

Edit: Bed is calling me and I am only half done, I will post it tomorrow.

Edit 2:Ok, I finished the post and posted it down below.



Last edited by Tracker on 30 May 2009, 7:32 pm, edited 1 time in total.

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30 May 2009, 2:09 pm

If you want your son to grow up to be a hippie or a punker, keep treating him like a child, and he will grow up to rebel. That's what happened to me. My dad took my freedom away from me and put me into job training for the special adults. Now I'm a punker who hates mainstream society, and I'm glad that I don't have a job that I have to dress up for, every day. If you treat your son with the same respect that you treat his siblings and your own friends with, than he will most likely want to grow up to be a productive member of mainstream society. The choice is yours. I can't tell you what to do. Do you want your son to be one with society, or do you want him to be a punkish or hippie-like outcast? I hope that you do the right thing, and I wish you the best with your son. :)


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