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Fuzzypup
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25 Jun 2017, 12:36 am

Well I just spent 2 hours writing a detailed story about myself and my family and when I hit send I accidentally hit the back button and it wiped everything I wrote. Lovely.

So sum up 1st post. My wife and son (10yo) are on the spectrum and have ADD. My wife didn't know she was until we had our son diagnosed. She also has depression and my son anxiety disorder. If you were to score my wife and son on the autism scale it would be incredibly low to the point you wouldn't almost notice.

Needless to say I had to quit my FT job to take care of both of them. My son has a much milder version of all the stories and videos I have seen in the past 4 years of aspies. Both of them have a near genius I.Q.. My son does well in school. He has no real friends. My son comes off as a normal kid who is highly defiant, and kind of a jerk. Although he is an incredibly kind person. I love him, but I don't like him much.

The problem is that between all their disabilities it is an enormous mental drain on me. My wife can't handle him for long period of times. His stim is making noises and screaming, which sets my wife off, which sets him off, and frankly drives me nuts because I believe I have misophonia (sensitive to noises). We have several major issues with him.

A) Our son doesn't give love back. He doesn't help and is disgruntle if asked most of the time, he makes fun things unfun through non-cooperation or frustration. Although he is getting better.

B) non-compliance with simplest of requests which takes major brain washing to get him to do. Like bedtime takes 2-3 hours with him.

C) non-communications so we can resolve what sets him off and what is going on inside his head. We don't know what set him off and he doesn't tell us.

This constant drain on us leads us to not like him, but we do love him and he has some incredibly good traits. We have to fake it everyday so when he is older he doesn't hate us. We do things that normal families would enjoy to do with their children but for us it is a chore. He goes to school/camp and plays on the computer. We do other things with him to get him off of so much screen time but it is rarely enjoyable.

I do know we have it easy. I read and watch stories of other parents with kids on the spectrum and I am thankful everyday I am not as stressed as they are. Kids putting holes in the walls, physically abusive temper tantrums, living with mom doing nothing in their 20s and not helping, becoming violent and verbally abusive with the parents.

I also understand things from my son's situation being on the spectrum. I studied it and my wife has it. While I sound like a fed up parent I do everything I possibly can to shield my son from my utter frustration with him and put up a happy calm face. I know he can't help who he is and he can't understand normal functions of society because he is not capable yet. It will take time. I know 1st hand from my wife's chemical imbalance how out of control a person with neurological disorder can feel like. I also know the frustration of not being socially accepted because I wasn't growing up. Only after I was in my 20s did my social life improve. Even my best friend is shocked I didn't turn out screwed up from my childhood.

My marriage is great despite my wife's disabilities and lack of organization. It makes it more difficult because she can't deal with him often and her ADD makes her dysfunctional with everyday common things I need to take care of. I have to be everyone's Alfred from Batman. She has a limited capacity of tolerance while my reserve is much larger. We don't fight, use foul language at each other, or low blows. We are both rational, intelligent, critically thinking, self aware human beings. We don't spank or diminish our son with hateful words. In fact he doesn't like to hear cussing and has never said "I hate you" to us which I find a good thing. My mother says I am an incredible dad but I don't feel like I am when I don't like doing things with my son. When I have to fake it all the time with him because he is so draining.

I am mentally exhausted and yet feel so guilty because others have it far worse than I do. I also feel bad for other children with far worse autism. Being unable to control your own brain chemistry and being constrained by your own neurology must be it's own torment. I only have a tiny inkling of how it feels when I am overloaded on not much sleep. We are very lucky yet still trapped walking in an eggshell garden while dragging a sack of rotting corpses behind us trying to keep ahead of the smell.

I read 80% of couples in which one has ADD gets divorced.
And 80% of couples who have an autistic child get divorced.
That means if you marry an ADD spouse and have an autistic child it should lead to divorce 96% of the time. I feel lucky.

What I want to know is how can I get my son to participate more, to give more, to communicate more, and comply more with things so it isn't a long struggle? None of the books have worked much that my wife or myself read. Reward systems don't work with him. Logic may or may not depending on his mood.

I have no where to vent my frustrations except here.



traven
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25 Jun 2017, 3:34 am

Fuzzypup wrote:
If you were to score my wife and son on the autism scale it would be incredibly low to the point you wouldn't almost notice.

Needless to say I had to quit my FT job to take care of both of them.

The problem is that between all their disabilities it is an enormous mental drain on me. My wife can't handle him for long period of times.


Being unpleasant here, but it all doesn't make sense, who's abusive in this relation, is there munchhausen by proxy going on? Does the wife have PTS or other mental disorder, its all very shady!
And why drop everything in order to do things for others they should do themselves, keeping people at your mercy of being 'helped'?
Who's victimised by victimising who?



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25 Jun 2017, 5:09 am

There is a lot here, so I am going to try to tackle this piece by piece.

Fuzzypup wrote:
So sum up 1st post. My wife and son (10yo) are on the spectrum and have ADD. My wife didn't know she was until we had our son diagnosed. She also has depression and my son anxiety disorder. If you were to score my wife and son on the autism scale it would be incredibly low to the point you wouldn't almost notice.


Fuzzypup wrote:
Needless to say I had to quit my FT job to take care of both of them. My son has a much milder version of all the stories and videos I have seen in the past 4 years of aspies.


These two things are not consistent. If they were so mildly autistic to the point of almost not noticing, they would mostly just be suffering inside in relative silence and you almost would not notice other than maybe a little weirdness and some disorganization or naivety or something.

I think you are confusing high functioning autism with mildness. High functioning autism, as used by most people, mostly means not intellectually impaired. It does not mean mild. Just because you have seen videos of autistic people banging their heads against a wall doesn't mean the absence of that behavior means "mild." This may seem pedantic, but if you say you can barely notice it, people on a board for autistic people are going to take that pretty literally, and not understand what you are actually trying to say.

It is not common to have to quit your job if a child has mild autism. So, it definitely needed to be said, because we would have never guessed this.

Fuzzypup wrote:
Both of them have a near genius I.Q.. My son does well in school. He has no real friends. My son comes off as a normal kid who is highly defiant, and kind of a jerk. Although he is an incredibly kind person. I love him, but I don't like him much.


Unfortunately, just because he has social deficits, it does not mean he won't pick up on this. Again, I am going to come off as pedantic, but do you actually not like him or do you mean he is frustrating you to the point where you feel that way?

Fuzzypup wrote:
The problem is that between all their disabilities it is an enormous mental drain on me. My wife can't handle him for long period of times. His stim is making noises and screaming, which sets my wife off, which sets him off, and frankly drives me nuts because I believe I have misophonia (sensitive to noises). We have several major issues with him.


I can't tell how severe your wife is but does not being able to handle him for long amounts of time have to do solely with noise sensitivities on her part or other things as well? If it mainly the noise, there are probably some workarounds you put in place, where she takes time outs if he is too noisy (assuming he does not need constant supervision for other reasons. I don't know all of what your son does, but again, this does not sound mild to me at all. If time outs for her to regenerate are not possible--maybe noise cancelling headphones.


Fuzzypup wrote:

A) Our son doesn't give love back. He doesn't help and is disgruntle if asked most of the time, he makes fun things unfun through non-cooperation or frustration. Although he is getting better.

B) non-compliance with simplest of requests which takes major brain washing to get him to do. Like bedtime takes 2-3 hours with him.

C) non-communications so we can resolve what sets him off and what is going on inside his head. We don't know what set him off and he doesn't tell us.


Autistic people tend to enjoy different things than neurotypical people. If you are trying to force him to enjoy neurotypical (NT) things for no other reason than you think he ought to enjoy them then stop. This is a common parental stage to go through so i am not sure if you mean this or something else, but if you are doing this--stop. Try to enjoy the things he likes. If the issue is you want to enjoy things you like, and you can't do it because you can't leave your wife alone with your son to take a break, then that is harder to deal with. I would try to focus on getting workarounds in place, so your wife can handle your son. If this is not feasible, then maybe consider trying to access respite care so you can have a break. Caregivers need breaks too.

Non-compliance is common for various reasons in some autistic children. Often it is because the cannot comply becasue of something you need to figure out. For bedtime, routine often helps. I would try to get him into a habit of doing a wind-down activity that he likes and will do, an hour before bed, so he is not all excited because that may make him too hyper (for lack of a better word) to settle down. Visual and other types of reminders may help also. Autistic people can have a lot of trouble with transitions and you need to make sure he is not in the middle of anything uncompleted right before bed. You will need to make sure he is at a stopping point, or give him a couple of minutes, if you have to to finish whatever he is doing.

Autistic people tend to show love in atypical ways, so maybe he is showing love in ways you have not figured out, yet. Some autistic people are snuggly (despite stereotypes) but many are not (the reason for the stereotype) and of course if he has trouble understanding and communicating emotions, it won't come in verbal affirmations, either.

If he cannot communicate well enough to explain what is troubling him, you kind of have to be a detective and try to figure it out based on patterns and context.

Fuzzypup wrote:
This constant drain on us leads us to not like him, but we do love him and he has some incredibly good traits. We have to fake it everyday so when he is older he doesn't hate us. We do things that normal families would enjoy to do with their children but for us it is a chore. He goes to school/camp and plays on the computer. We do other things with him to get him off of so much screen time but it is rarely enjoyable.


OK, so it is mainly frustration them, which is easier to deal with than if it was something else that made you not like him.

It is fine to plan family activities, but they are probably not going to look like typical family activities if you want him to enjoy them too.


Fuzzypup wrote:
I also understand things from my son's situation being on the spectrum. I studied it and my wife has it. While I sound like a fed up parent I do everything I possibly can to shield my son from my utter frustration with him and put up a happy calm face. I know he can't help who he is and he can't understand normal functions of society because he is not capable yet. It will take time. I know 1st hand from my wife's chemical imbalance how out of control a person with neurological disorder can feel like. I also know the frustration of not being socially accepted because I wasn't growing up. Only after I was in my 20s did my social life improve. Even my best friend is shocked I didn't turn out screwed up from my childhood.


You may be the one with mild, barely noticeable autism. Autism is a spectrum, and it extends into the NT part of the spectrum as well. Mild autism would be sub-clinical and therefore not diagnosed. That may not apply to you, but just to plant a seed for you, if you have not tried to look at your childhood in that light.

Fuzzypup wrote:

What I want to know is how can I get my son to participate more, to give more, to communicate more, and comply more with things so it isn't a long struggle? None of the books have worked much that my wife or myself read. Reward systems don't work with him. Logic may or may not depending on his mood.

I have no where to vent my frustrations except here.


There is no all-purpose fix for everything. We would have to look at each individual thing you want to improve, and suggest options for coping mechanisms etc. For reward resistant non-compliance, I would suggest Ross Green's collaborative problem-solving method. He has a website with free resources as well as books, that may be helpful to you.


In terms of specific things, we would need to address them, well, specifically. Obviously, you have to narrow them down first, because it is not going to be practical to try to tackle all of it at once. I am really not sure what you mean by "give more" but if it means express things in an NT way, that is not necessarily a 100% productive goal b/c he is not NT.

He is going to communicate (when he communicates) in a way native to his neurology, so if you are expecting something else here, I would adjust my expectations. Participating is best done at first, mostly on his terms, doing things he likes (not things you wished he likes) so knowing his special interests would be helpful for this.

It may mean trips to cell phone stores to look at cell phones or any number of atypical activities you would never think to make a family activity. Later when you have him willing to go on outings, you can try to introduce more reciprocity, slowly, where he starts to tolerate doing things other members of the family like, too.



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25 Jun 2017, 6:21 pm

I don't take offense on anything someone says BTW. Be as upfront as you like.

Abusive wife - Not at all. Her ADD causes her to be incredibly disorganized and absent minded. I am the house husband. It is the needs of both that overwork me.

Mildness - My son spoke early and walked late. But the autism signs are there. Took a while for them to figure it out. He is also an only child which makes it even more difficult.

Wife not handling child - yes there are work arounds and we have them in place. But often times he doesn't abide by them. If I am having stress with his antics imagine a female aspie with ADD. The stress is amplified.

Autistic people do/see things differently - I am aware of things that are different for autistic kids. I am aware I can't make him NT. But he needs to learn how adjust to NTs and the world so he is happy and productive in life. If you tell me I can't until he is 13 or 15 because he is not physiologically developed enough to understand ok I can accept that. He is simply unpleasant to play a game with from setup to put away. If I explain to him a better more social approach to playing so he gets along with others I get a shut down on that can turn into a meltdown because he doesn't want to talk about it.

Me autism - yes I have considered that and I am very well aware it is a broad band. When you fall out of the norm of society expectations they slap a label on you. I test close to borderline for ADD and I do have a sound sensitivity.

Resources - yea we have read a mountain of books, watched a ton of videos over the years. All of it doesn't work. The only thing that works is natural consequences, logical reasoning, and brainwashing over time. Pounding concepts in 50 different ways in his head till it sticks. Then suddenly one day he is conditioned to do it.

My son doesn't do one thing that you can record in a video that sets up frustration. He does many, MANY, little things that are anti-social, uncooperative, energy sucking, rude, and self centered. All these tiny things add up to make him unlikeable over time. If he explained me what is going on in his head I would happily help him. But he doesn't talk about his feelings or often consider solutions to his problems. So we have to fake liking him until things get better. They are getting better. But it is still a continuous mental strain on my wife and myself.



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25 Jun 2017, 7:42 pm

Fuzzypup wrote:
I don't take offense on anything someone says BTW. Be as upfront as you like.
Mildness - My son spoke early and walked late. But the autism signs are there. Took a while for them to figure it out. He is also an only child which makes it even more difficult.

Speaking early also does not mean mild. The emphasis on speech uber alles I think is one of the more harmful things that experts stress because of the false expectations people have surrounding speech and autism. It ends up doing a disservice to multiple parts of the spectrum, IMO. Communication of any type is important, and is not limited to speech.

The old, obsolete designation of Aspergers included the necessity of both no speech delay and a lack of intellectual impairment as part of the label's distinguishing characteristics. Asperger's never meant mild, though I lot of people used the label as though it means mild. There are any number of autistic issues that have little to do with speech or intellectual impairment that would never be characterized as mild.

Fuzzypup wrote:
Wife not handling child - yes there are work-arounds and we have them in place. But often times he doesn't abide by them. If I am having stress with his antics imagine a female aspie with ADD. The stress is amplified.


The work-arounds should not be for him, they should be for your wife. Based on what you describe, your wife seems better positioned to take advantage of coping mechanisms than your son. She needs to have things in place where she can better adapt to his behaviors, so that she does not struggle as much.


Fuzzypup wrote:
Autistic people do/see things differently - I am aware of things that are different for autistic kids. I am aware I can't make him NT. But he needs to learn how adjust to NTs and the world so he is happy and productive in life. If you tell me I can't until he is 13 or 15 because he is not physiologically developed enough to understand ok I can accept that. He is simply unpleasant to play a game with from setup to put away. If I explain to him a better more social approach to playing so he gets along with others I get a shut down on that can turn into a meltdown because he doesn't want to talk about it.


It sounds like his is just not ready for this right now. I can't tell you if he will be at 13-15. He will probably be better, but perhaps not up to your hopes and expectations. This sounds like you need more scaffolding-adaptations to game play that make it easier for him to stay calm and focused. If that means tanking games for him, or having house rules (or whatever he needs) then that is what you do until he is ready for a more challenging situation.

Fuzzypup wrote:
Resources - yea we have read a mountain of books, watched a ton of videos over the years. All of it doesn't work. The only thing that works is natural consequences, logical reasoning, and brainwashing over time. Pounding concepts in 50 different ways in his head till it sticks. Then suddenly one day he is conditioned to do it.


I am not a big fan of video taping autistic children other than for very limited, practical diagnostic purposes, so I really can't speak to videos since I do not believe in them. Natural consequences and reason are the big drivers for us also. Not sure what you mean by brainwashing. If you mean pro-social social stories and such, I have found that this tool tends to lose it's effectiveness after the child reaches a certain point where s/he begins to feel it is manipulative. YMMV

I like to think about bringing up issues on a recurring basis as planting seeds for the future vs. pounding things into his head, but that might be because I find for my son, a gentler approach tends to be most effective and my terminology reflects that requirement. I think most of the time, while the repetition is helpful, the limiting factor is the maturity level of the child with reference to whatever the thing is. he does it when he is ready and cannot do it sooner than that, no matter how often I bring something up.

Fuzzypup wrote:
My son doesn't do one thing that you can record in a video that sets up frustration. He does many, MANY, little things that are anti-social, uncooperative, energy sucking, rude, and self centered. All these tiny things add up to make him unlikeable over time. If he explained me what is going on in his head I would happily help him. But he doesn't talk about his feelings or often consider solutions to his problems. So we have to fake liking him until things get better. They are getting better. But it is still a continuous mental strain on my wife and myself.


Talking about his feelings is probably one of the hardest asks you can make of him. That is long term goal, not a short term one and requires baby steps. We found the movie, (and related resources for) Inside Out, very helpful, and we saw a nice jump in this skill after he saw this movie. That said, it is certainly not a done deal, and a work in progress, always.

As far as the little things that add up, I again, think you probably need to revise your expectations. You would not dislike a child who slowed you down due to a physical disability. This is much the same, and sometimes it helps to remember that.

Edited for literacy.



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25 Jun 2017, 7:47 pm

Fuzzypup wrote:
If he explained me what is going on in his head I would happily help him. But he doesn't talk about his feelings or often consider solutions to his problems..


Talking about our feelings can be incredibly difficult, nearly impossible sometimes. We learn very early on that our logic and reasoning makes no sense to most of the people around us, and trying to explain just leads to unending arguments because they can't see the world the way we do, and they tend to judge us very negatively for our differences, so one learns very early on to simply keep oneself to oneself.

By the time you reach adolescence, you've already developed a hard shell and it's just a knee-jerk reaction to snap it shut and keep it that way whenever somebody starts asking you how you really feel, because the truth is THEY DON'T REALLY WANT TO KNOW. What they actually want, is for you to tell them something they can identify with, to make things easy to solve.


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26 Jun 2017, 10:43 am

Good points on the last two replies.

What I call brain washing is what you call planting a seed. For example for years I make sure my son sees me doing nice things for other people. Holding doors, helping old ladies, stopping on the side of the road if someone needs help. Then I explain that doing nice things brings me personal fulfillment and happiness. I ask him if he noticed how I brightened up that person's day. So over the years slowly but surely he is catching on. He is a very kind kid to others. He also has a witty sarcastic mouth. Not to us, but to other kids. If some kid starts with barbs he retaliates with barbs back. But not cruel barbs. I am trying to steer him away from that road of sarcasm with others. I try to teach him that he doesn't want friends that constantly insult him. Ignoring negative remarks or using kindness when there aren't any negative remarks is a far better approach in gaining friends and identifying assholes (mean kids). His incredibly memory and wit allow him to outmaneuver other children when they start this crap.... well unless the push him over the edge of tolerance...

2nd example. He is incredibly confident. He is top in his class. He doesn't want to do homework because things come too easily for him. He is one of these kids, at least from my observation, that will go through school probably not doing homework and getting A's. So I approach this two fold and it took a lot of planning and manipulation. One about how the world is outside the USA. I show him how poor and lacking in opportunity others are. I show him pictures on the internet of how a poor the common Indian citizen lives. That most of the world is like this. I let him know that he is incredibly fortunate to have what he has and for what reasons.

We are just middle class but I feel we are the top 1% of the world just because we have access to good food, water, schools, medicine, and a good home. If he wants to be smarter and keep living a good live he has to maximize his intelligence. To maximize it he has to go to school, he has to do homework. A person who is of average in intelligence can be smarter than he is through hard work. I praise him not on his genius but on his process and that he accomplished what he does through hard work. It is better to tell your child "wow you worked so hard on getting straight A's" than "wow you got straight A's. You are so smart".

I also use his love of being smart to get him to eat right. Explaining how food impacts his brain and how it operates. How food impacts his health. Sure he has ice cream and hamburgers but we get him to eat salads and other veggies where many parents of aspies with a particular taste have trouble. He loves water because we trained him not to have juice which is pure sugar with no nutritional value. And sugar is the chemical that causes the most health problems.

So I use the term brain washing. My parent's brain washed me when I was a teenager. "if you get a girl pregnant your life is OVER!" and they explained why. This was repeated to me over and over. I got the message and was never an idiot when it came to sex.

So no I am not tying him to a chair and forcing him to watch videos with clamps in his eyes like the movie Clockwork Orange.

@ Velociraptor: Your statement about when others ask about your feelings is partially true. Personally I do want to know what he is feeling. I do understand that a person wants comfort when they pour their heart out, and asks for advice when they are ready. Most of the time a person just want to vent and not told the solution. Most people don't get this concept but I do. And if I understand his feelings I can figure out a resolution on my own for his feelings and make him feel better.

For example for YEARS he has been a pain in the ass to go to sleep and get out of bed for school. It was always a battle. One day finally in the morning he said he was very tired and explained he couldn't get to sleep the night before for 2 hours because he was worried about something when he went to bed. I now can see how much sleep he got and let him go back to sleep. He is late for school that's fine. He has a valid reason. And that solved a lot of problems. So in this case telling me how he is feeling allows me now to realize the situation without asking for a solution. I did ask if he wanted to go back to sleep and he said yes so I let him. So if this happens again I can ask the right questions and things turn out ok then me thinking he is acting like a jerk in the morning for a different reason.

Another is if he transfers anger from whatever is upsetting him to us, his parents. If I don't know he is upset about something I start assuming it is defiance to do what I am asking. For example several times he just sits there like a blob in the morning before school. The more we motivate him to get up and get in the car the more upset he gets and we have no clue why he is getting upset. There is no reason and he just makes loud noises and screams. Well turned out one day he woke up very depressed. He told us. Ok now we can change the tune. I get it. We didn't try to resolve his depression we just comforted him until he felt better. We were late be he was better.

Don't get me wrong. My kid isn't some monster. I am incredibly thankful he publicly is seen as very NT 90% of the time. I knew another kid, whom we were friends of the family, which instantaneously you could tell he had something drastically off about him. But his combined behavior, lack of communication, genius, and appearance of normalness really make him come off as a jerk in many situations. Frankly there was only one vacation in which I genuinely enjoyed his company. For some reason he was nice, reasonable, loving, and pleasant.

And I know the difference between having a child with autism and having an NT child. I took care of one for a long while and man what a difference. Positive reinforcement works like a charm, the child gave me more love than my own child does, he was polite and pleasant. I have absolutely ZERO pity for a parent of an NT child or a child without a chemical imbalance (depression, bi-polar, anxiety issues, etc). If an NT parent b*****s I just want to smack them and tell them how good they have it and the problem is them. But on the outside I just listen and offer advice when asked.

We are incredibly well educated people and critical thinkers. We just don't know enough people in the same situation as us to gather information on commonalities you can't find described in books. So I finally turned here to get input from adult aspies and parents of aspies.

It does get better as years go on. I can't quantify how I have held up so well considering my wife and my kid. And my wife's aspiness rubs off on my son. Like she says "go away" to me instead of being polite because she is doing something my son picked it up too. But as much as it irritates me when either of them say it to me I realize it is the aspie way. I can talk to my wife 100x about how the way she says things is duplicated in our son but if she is irritated she can't help it.

One thing I noticed is that my wife and I don't fight like some couples. We don't have scream matches insulting each other and cussing at each other. 99% of the time we discuss things as adults. No verbal barbs. Not saying one of us hasn't snapped in the past but there is zero verbal abuse. My son doesn't like cussing and doesn't cuss. He never says cruel things like "I hate you". I don't know if there is a correlation or not. If other couples have the typical movie marital fights where mean words are slung back and forth and a child suffers. I remember my parents having such fights on rare occasions and the impact on me.

Luckily we have no financial stress. Our home is paid for and we have no debt. Took a lot of work to not have a mortgage and I can tell you that is a brick that felt really good falling off our shoulders.

The answers so far were quite helpful.



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26 Jun 2017, 3:02 pm

I hope this doesn't come out as glib because I don't mean it to do so. Get some ear plugs. If you have misophonia, having ear plugs at all time really reduces your overall stress level because you know you have an out. I get them in bulk at uline. They come in these handy little plastic bags that I stash everywhere.



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26 Jun 2017, 4:44 pm

Fuzzypup wrote:

Another is if he transfers anger from whatever is upsetting him to us, his parents. If I don't know he is upset about something I start assuming it is defiance to do what I am asking. For example several times he just sits there like a blob in the morning before school. The more we motivate him to get up and get in the car the more upset he gets and we have no clue why he is getting upset. There is no reason and he just makes loud noises and screams. Well turned out one day he woke up very depressed. He told us. Ok now we can change the tune. I get it. We didn't try to resolve his depression we just comforted him until he felt better. We were late be he was better.


Maybe you should start by not assuming the worst possible motives for what he does.

Fuzzypup wrote:
Don't get me wrong. My kid isn't some monster. I am incredibly thankful he publicly is seen as very NT 90% of the time. I knew another kid, whom we were friends of the family, which instantaneously you could tell he had something drastically off about him. But his combined behavior, lack of communication, genius, and appearance of normalness really make him come off as a jerk in many situations. Frankly there was only one vacation in which I genuinely enjoyed his company. For some reason he was nice, reasonable, loving, and pleasant.


I don't think you understand your audience here. This is a site specifically designed to be of primary use to people on the spectrum. There are people of all functional levels on this site as well as parents of all types of children. This site is very pro-neurodiversity. Regarding your son, it is nice that you are "thankful he publicly is seen as very NT 90% of the time" if that makes it harder to dislike your child, I guess, </sarcasm>

This is not a certain well-known autism website that considers NT neurology the Holy Grail. I concede the point that publicly appearing as NT is an advantage, (and yes, I demonstrate to my son ways to fake it when necessary for pragmatic purposes) but part of the purpose of this site is to increase public acceptance of non-NT presentations. Your subsequent description of the other child whom you know (as well as your constant references to how much you dislike your own child's intrinsic nature) is very offensive.

I tried to give benefit of the doubt but you don't appear to be taking my social cues, so instead of being subtle, I am going to be more direct. You really need more empathy for your son. You say you recognize his difficulties, but your empathy is not showing, and it does not look like you recognize at all how emotionally draining it is to pretend you are something you are not. Autism != being a jerk, despite your constant use of this word. The prefix in autism is from auto, meaning self. Of course, your son appears self-centered from an NT societal perspective. Your son, frankly sounds delightful from your descriptions and you should appreciate him more. I doubt the other child is a jerk, either.



Fuzzypup
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26 Jun 2017, 8:13 pm

Earplugs - yes I finally realized it about 1 month ago. Years of it in my face and I never thought about it.

Audience - well them I am at the right site if I thought this was different. I need input from people like him. I thought it was a mix.

I will tackle your dislike reply and put it in another perspective. Imagine a food you don't like. But that is the only food you don't have to eat. What can you do about it.... Nothing. You have to eat it to survive. Yes I fake it with him. Don't Aspies fake it to fit in with NTs? What is the difference if he is clueless I am faking it and he grows up to be well adjusted? I don't scream at him, I don't spank him, I don't think he is evil or malicious. I have spent an enormous amount of time making sure he develops with a good self confidence and in a healthy family even if I have to suffer. I said he acts like a jerk, not that he is one BTW. Just because I don't like cabbage doesn't mean the cabbage is malicious or manipulative. He is draining and my wife isn't perfect. So here is an example of the frustration.

Last night I didn't feel well from some food. I went to sleep early. I told my wife to please get him off at 8pm. I knew it was bath night. 9:15 the dog barks, wakes me up. I go to the living room and he is still on the computer watching videos. I ask her nicely why she didn't get him off at 8pm that's when he goes to bed. She said he is just watching videos not playing computer games. *sigh*. So now the kid goes to bed late. Now he lacks sleep. He is grumpy today. He goes to camp late. Didn't get his bath because it was too late. He has to go to camp because I have appointments that will cost me money if I cancel them at the last minute.

Tonight it is bath time. He likes it when mom sets it up for him. Mom goes on the computer to help a friend with work right when it's time for him to stop playing and take a bath. He throws a semi-meltdown goes to his room when she says she is working and closes the door. I stay calm and I am still waiting for him to stop having a fit. I try to calm him down, talk to him, no deal.

So imagine this scenario repeating constantly in my house, sometimes worse. Recently he created a hole in his door and the wall. I don't get mad at my wife, I don't get mad at my kid. It is pointless. That is how they are. So now tomorrow if this continues I will have trouble getting him out of bed again because it accumulates. I have plans tomorrow for work. If he throws a fit in the morning I have to cancel my plans.

All this is incredibly frustrating. But I push it aside. I have a lot of patience. I have a lot of empathy for both their situations. I have seen my wife off the anti-depressants. It isn't pretty. He is a clone of her as a child.

And I never said he was a jerk, he comes off as one. And I never said the other child was a jerk, you misread.

I will also show this from the NT, maybe not NT, end. People can give only so much before they get worn. NTs have to adapt to autistic child, autistic children grow to adapt in the other direction over time sometimes to adulthood depending on the severity. But that is a difficult road for the care taker. I will use a real example to support my point. When a person has Alzheimer's and the spouse is the caregiver the disease equally destroys both people. It is not uncommon that the caregiver dies before the patient from the stress. I am well read in the chemistry that goes on inside our bodies, how stress builds cortisol and how constant stress is destructive to the body partially due to this chemical.

I am 90% sure my son will be fine as an adult. But as a parent I am sacrificing a lot for him and it is incredibly stressful. I have incredible empathy for families that have children with autism that have worse conditions for both the parents and the child. There are some very good videos on Amazon and Netflix about autism.

So I turn this around. How would you handle this catastrophe in the making above.
Not mad by the ways. I like direct. I hate all this p**** footing around with words. Don't like small talk. So be as direct as you like. I am learning things.



ASDMommyASDKid
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26 Jun 2017, 9:17 pm

Fuzzypup wrote:

I will tackle your dislike reply and put it in another perspective. Imagine a food you don't like. But that is the only food you don't have to eat. What can you do about it.... Nothing. You have to eat it to survive. Yes I fake it with him. Don't Aspies fake it to fit in with NTs? What is the difference if he is clueless I am faking it and he grows up to be well adjusted? I don't scream at him, I don't spank him, I don't think he is evil or malicious. I have spent an enormous amount of time making sure he develops with a good self confidence and in a healthy family even if I have to suffer. I said he acts like a jerk, not that he is one BTW. Just because I don't like cabbage doesn't mean the cabbage is malicious or manipulative. He is draining and my wife isn't perfect.
...

Ok, I am not a pollyanna-ish person. I have been described as being quite the opposite. I say this only to give you context, so you don't think I am a boppy--shiny-happy person giving this advice. If you can't get yourself to actually like your son and accept who he is, you are not going to be convincing. My son was tested in the .01 percentile (No, this is not a typo--I mean, literally 1/100th of one percentile) for social skills and he knows if I am being fake about certain things.

So, it is doubtful that you are being as convincing as you think you are. This means your top priority should be to actually like your son, because any substantive progress you make will depend on having an authentic relationship with him. This is entirely different from whatever faking he has to do at school or camp for however many hours a day. Home should be his safe-haven where he can stop faking, and relax from this draining activity of fitting in with NTs. How can he do this if you don't truly accept him and like him, sincerely, for who he is?

Fuzzypup wrote:
He throws a semi-meltdown goes to his room when she says she is working and closes the door. I stay calm and I am still waiting for him to stop having a fit. I try to calm him down, talk to him, no deal.
...
So imagine this scenario repeating constantly in my house, sometimes worse. Recently he created a hole in his door and the wall. I don't get mad at my wife, I don't get mad at my kid. It is pointless. That is how they are. So now tomorrow if this continues I will have trouble getting him out of bed again because it accumulates. I have plans tomorrow for work. If he throws a fit in the morning I have to cancel my plans.

All this is incredibly frustrating. But I push it aside. I have a lot of patience. I have a lot of empathy for both their situations. I have seen my wife off the anti-depressants. It isn't pretty. He is a clone of her as a child.


Ok, so again, his behaviors do not sound mild. The thing here is to scaffold; and you and your wife are going to need to get on the same page on what this scaffolding looks like. The ultimate objective is for your son to be able to recognize signs of impending anger and stave the meltdown off himself. While that is worked on, simultaneously, you and your wife have to be able to help him help himself. If you have appointments and work-at-home assignments and the like, your wife is going to need to learn these skills as well. It may mean that you have to adjust some of your expectations of him to things she can manage while she works on being able to do this.


Fuzzypup wrote:
And I never said he was a jerk, he comes off as one. And I never said the other child was a jerk, you misread.


Ok, this is heartening, but the tone you use seems to suggest your son (an other autistic children) come off that way to you and not just to the NT world at large. This is not good for your relationship with your son, that you are regularly thinking of him as acting like a jerk. Your attitude may improve if you try to mentally substitute another word for jerk that is not so negative.

Fuzzypup wrote:
I will also show this from the NT, maybe not NT, end. People can give only so much before they get worn. NTs have to adapt to autistic child, autistic children grow to adapt in the other direction over time sometimes to adulthood depending on the severity. But that is a difficult road for the care taker. I will use a real example to support my point. When a person has Alzheimer's and the spouse is the caregiver the disease equally destroys both people. It is not uncommon that the caregiver dies before the patient from the stress. I am well read in the chemistry that goes on inside our bodies, how stress builds cortisol and how constant stress is destructive to the body partially due to this chemical.


Ha ha. You think only NTs get frustrated? Your wife should be example #1 that this is not the case. We may not be a site that oozes virtual hugs and whatever else passes for empathy on generic NT sites, but that does not mean we do not have similar challenges. I am also home with my son -- and I have had to take on homeschooling because of our local school district's inability to appropriately educate my son and deal with his autism. I also have a mother with Alzheimer's, so yes, I am well aware of that circumstance as well. Sometimes you just have to deal with what things are and not what you planned for. But do I think my son acts like a jerk? No, I do not. Does my mother have some unpleasant new personality aspects due to her disease. Heck, yeah. Do I think she is being a jerk? No. Do I want/expect a medal or a cookie? No.

Fuzzypup wrote:
I am 90% sure my son will be fine as an adult. But as a parent I am sacrificing a lot for him and it is incredibly stressful. I have incredible empathy for families that have children with autism that have worse conditions for both the parents and the child. There are some very good videos on Amazon and Netflix about autism.


So I turn this around. How would you handle this catastrophe in the making above.


i think the answer to the section above answers this as well. The only things I think I need to add is that I really don't think the Autism P**n videos are at all helpful, or educational as they are mainly pity parties for self-aggrandizing parents and a gross violation of the privacy of the children in them. In addition, I am really not sure what you mean by catastrophe in the making. This seems like hyperbole. Your son has autism, not a fatal disease.

Fuzzypup wrote:
Not mad by the ways. I like direct. I hate all this p**** footing around with words. Don't like small talk. So be as direct as you like. I am learning things.


No one thought you were mad. :)



Fuzzypup
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26 Jun 2017, 10:34 pm

My son has a hard time sleeping. Tonight he finally came out of his room ok. Took a bath then made loud noises/screamed for 45m straight in his room. Then finally fell asleep. The less sleep he gets the worse it is. It does shift to the next day. The melatonin seems to be not working anymore either. Maybe it's summer.

It is sad your school doesn't have resources for your child. Is he severe, mild, or somewhere between? I hope you have a resource to give you some time to yourself. We have none really.

The videos I watched were all from the autistic person's perspective like Temple whats-her-name who speaks to cows or other people who are trapped in their own body being tormented by oversensitivity and have an amazing brain. Others are simple stories of Aspies and how they deal with the world. I don't watch them for a parent pity party. I watch other Aspies relate what they feel, how they think, what they experience so I know how to protect my son from these things and guide him through evil middle school. I have a theory that self confidence starts in the 1st year of school. The more you fall behind the exponentially worse it gets as time passes as more kids notice the differences. Not fitting in, not having friends, being picked on. But this isn't the age of my school years. Much different now.

I always promote kindness and non-violence with my son. But if one day he gets in trouble for clocking some antagonizing, name calling, loud mouth punk I'd just ask him "did he deserve it?" If he says "yes" I will just pat him on the back. This is Neanderthal to say but if a kid is getting picked on all he has to do is beat the crap out of one of the bullies and no one picks on him again. But I highly doubt something like that will happen. I had shitty schools and it never happened to me.

We lived in another state before and I was pretty irritated at the school. The principle kept punishing my son because there was this other kid that just set him off. That kid's family had issues and it affected the son. Dad wasn't nice to mom. Of course he was able to push my son's buttons over and over and over. Finally one day my son got smart and out verbalized him on insults with his extended vocabulary. Well that didn't sit well and my son got in trouble. Punished again.

Much of the staff had Masters and better. And some of his teachers were good. But I came to a point that I realized the principle just didn't get it. So I played a different game of manipulation instead of intelligent confrontation and they treated him better. But still I was disappointed.

At his current school they are like "how can we help". He is in the gifted program in a magnet school. What a difference. He is much healthier mentally. My wife and I both remember in 4th grade is when kids start becoming cruel.

Anyways my point is that I couldn't imagine how different schools were from area to area. An 9 rating in one state is not the same a 9 rating in another state is my point.

As for faking it? I can't fake out of hate or lack of respect. I can fake out of frustration or irritation. I can say this venting all this has made me feel better.



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26 Jun 2017, 11:57 pm

i don't see any change for now, keep talking and selfjustifying,
(it's the same situation as another parent lately,
there's no working together, no bonding or building towards another future)

firstly you haven't put a good structure in place, or led by example
imagine, every approach you made didn't work because it didnt got followed through (which is a major problem for most parents)
the family is structured around his bad behaviour, but in this way you make him be that behaviour, that's very limiting
what do you do for fun? is your son allowed to chose an activity?
i'd strongly suggest you broaden his world outside the house, there's all kind of problems to be had not far away, encourage interest in hobbies, activities and (special) interest(s)

don't define people by what they can't,
https://www.youtube.com/watch?v=JA5iEKvHNxk



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27 Jun 2017, 1:46 am

Re: sleep: There are a number of things that can affect sleep. Sometimes it can be a hyperfocused type of rumination on the day's events. He might be replaying what he did wrong and agonizing over it. Perfectionism is a common autistic trait, and there is no telling how small the failure might be that can trigger this. Even an appearance of self-confidence does not mean this is not happening. This is an example of why trust is so important,and why good communication is really important. I used to do this as a child, and I had just enough social awareness to know to keep this to myself, growing up.

My son also has trouble with sleep, too, and I am on the lookout for it being the above, but so far, to the best of my knowledge, it appears to be he is just naturally on a different sleep schedule than regular humans. Even as a tiny thing he had his own preferred sleep schedule. When we peek in on him, he seems to be having a lot of fun, which is why I don't think it is rumination. When he was in public school, we had to be more strict about trying to get him to abide by a more typical sleep schedule, which was very difficult.

Now, I because I home school, I don't stress out over it too much, and just let natural consequences take over. I typically do not wake him up if he oversleeps. because I have that luxury and I am not worried about training him for a 9-5 job or anything right now. What happens, natural consequence-wise, is the extra school time comes out of his personal fun time, which he hates. Sometimes it works and sometimes it doesn't. We give him a wind-down activity (reading) for the half hour-hour before he sleeps, and that helps a little also.

As far as my son's severity rating, I really do not know where to put him. He was diagnosed before they instituted the new DSM. They gave him a high functioning rating vs AS b/c even though he had no speech delay, was an early reader, and was smart enough to correct the evaluators when they got their space facts wrong, his social impairment was such that they felt HFA was the more appropriate label. He has crazy splinter skills, and I guess if forced to label him, I would say he is mid-level --but even that is misleading since it implies he is mid-level across the board and he is not.

Much to their chagrin, I am sure, they had to put him in what passes for the gifted program, but it was administered in a way that was not especially helpful because the children were not put together. It was done in each classroom, in small groups as party of a larger class with kids of varying academic levels.

In any event, he needed one-on-one aide for focus assistance and social navigation which they refused to give him. In his final grade before I pulled him, the inclusion aide was untrained and worse than useless. His classroom teacher who he got on well with had to take medical leave, and then it all hit the fan. They switched his speech teacher without warning me first. She was terrible.

He all of a sudden became social and no one helped him. One kid (who they were aware of) kept intentionally pushing his buttons and honestly I still don't know and may never know all the BS that went on. Once the school district realized he might actually cost them the special ed money they were getting from the state, as opposed to using it on things for all the kids instead of mostly on him, they got additionally unfriendly real fast. Plus the benefit of having him around NT children was quickly developing into a negative, as they seem to get crueler earlier than I remember (I remember it as 4th grade too)

So I pulled him at the end of 2nd grade. I guess I could have sued them, it would not have helped. I would have had to keep him there to be tortured while the process unfolded, and the only thing I would have gotten would be, at best, tuition to an inadequate AS private school. None of the ones in our metro area are academic. They are designed for life skills only.

That said, I am grateful it happened when it happened, because it was close to the end of the year, so we could finish it out and not have him feel like a failure for pulling him out in the middle. In addition, based on what I saw, it is evident that there was no way we would have made it past third grade in that district, even without the upheaval, because they had no intention of providing him meaningful support.

In addition, I can tailor his academics for his aptitudes. He is quite a bit ahead on math and science, and I can soft pedal the social studies (You can guess why he is uninterested in that) and adapt language arts for someone who has trouble with standard children's fiction because he has to be explicitly taught things like what sibling rivalry is. (He is also an only and his social experiences are limited so he does not have the general social knowledge children's fiction assumes to be common knowledge.)

Luckily, most of the time, when we have issues, it is not hard for me to pinpoint the reason. I am an unofficially/undiagnosed aspie, and my husband is undiagnosed aspie light with undiagnosed ADD. So, most of the time, I either have insight myself or I see aspects of my husband's ADD in him, and can figure things out based on that. In addition, we have developed a relationship where if something is wrong, and he can recognize it himself, he will tell me what is troubling him. So that is one of the main reasons that i emphasize the importance of developing an authentically positive sincere relationship. I really think it is the key to most everything we have accomplished.



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27 Jun 2017, 3:05 pm

sigh. once again my 30m reply has gone down the tubes. Short version.

@traven - tough when he doesn't communicate. Last night he finally told us some kid stole things from him online that's why he flipped out. Trying World of Warcraft with him to see if we can play together. Hard to follow a system when he goes out of control.

@mommy - public schools can suck, lots of politics due to funding, find what he loves to do, I can't home school I don't have the patience and I need time to myself. Look at this genius kid with autism. He found his passion.
https://www.youtube.com/watch?v=Uq-FOOQ1TpE

I need some damn wine now.