Question from Dad with ASD son

[FIVER]

I remember those years, with 3 kids ASD)
I don't want to dredge up those memories, but I definitely feel for you. Preteen, teen were awful years. I'll just say this...you have to pick your battles otherwise you are likely to crack.
Pick one thing that bothers you the most, you and your wife muster up the energy to stay a united front. He will get the picture after he sees there is no backing down.
My husband and I didn't team up like I am telling you to do. We just did tag team. With 3 kids we were just exhausted. With me as an ASD mom, it was like the blind leading the blind.
But, I'm telling you pick your battle. Agree upon it with your wife and attack it until it becomes rote memory. Then take a breather, then pick the next annoying behavior and team up with your wife.
United we stand divided we fall.
You can message me privately if anymore questions. I can tell you more.

 

[unperson]

Interesting about the not being able to eat breakfast, I also can't eat a lot in the early morning, it makes me feel queasy. A carton of skim milk and half a banana was about all I could force down to get me thru the commute. I tend to need something around 10 or 11.

Pasta or noodles are fine at room temperature, if he lets stuff get cold. BBQ chook in the fridge can be good for time poor people. If I'm stressed I tend to need instant meals.

 

[SDRSpark]

Interesting about the not being able to eat breakfast, I also can't eat a lot in the early morning, it makes me feel queasy. A carton of skim milk and half a banana was about all I could force down to get me thru the commute. I tend to need something around 10 or 11.

This is me exactly. I like a donut or similar in the morning if I have a big day ahead that starts early. Anything too heavy and I feel sick.

I've gotten into arguments with the "breakfast is the most important meal of the day" people. I remember having that argument with a math teacher one time. Not too long after that my mom started getting on my case about not eating breakfast (she never had before) and started trying to find something I would eat in the morning. We finally settled on smoothies that I would drink on the way to the bus. That lasted one school year and then I was back to no breakfast. I wonder if the school called her to complain that I had said I wasn't eating breakfast.

 

[The Lorax]

That we do. My wife and I are in full agreement and cooperate. Like in the morning if I open his door and he doesn't roll over, he isn't getting up no matter what I do so I let him sleep and he is late for school.

I have to ask.... How did you have 3 ASD kids? We had one and realized the difficulty and said no more. We wanted 2 but we didn't want to take a chance on another difficult child.

I have no idea how you manged 3. There must be an award somewhere for it.

Shoot I couldn't handle 3 normal kids.

 

[FIVER]

That we do. My wife and I are in full agreement and cooperate. Like in the morning if I open his door and he doesn't roll over, he isn't getting up no matter what I do so I let him sleep and he is late for school.

I have to ask.... How did you have 3 ASD kids? We had one and realized the difficulty and said no more. We wanted 2 but we didn't want to take a chance on another difficult child.

I have no idea how you manged 3. There must be an award somewhere for it.

Shoot I couldn't handle 3 normal kids.

Had one, a girl who passed for a while. Then had twins.

 

[Major Tom]

I struggle with all the things your son struggles with. I'm 42 now the only thing that makes things better is time which grows wisdom, patience, and some executive function. That being said, I also have a son on the spectrum ASD-3 (a very severe form of autism). I've found that if he's behaving poorly or undesirably, the worst thing you can do is coddle him or positively reinforce his negative behaviors. If you do, he will just keep on behaving poorly to get what he wants. To be honest, I'm guilty of the same thing. I'm a firm believer of not positively reinforcing negative behaviors. Through both my own experiences on the spectrum and also my son's.

Hope this helps.

 

[VAW]

I don't know what to do to improve this situation or when my son will be able to do it on his own. So I wanted to ask the community since I can't be in his head or understand what is going on in his head. I wanted to get an ASD perspective.

A little background...
My wife and son both have ASD+ADD. Very mild. My wife holds a high paying job. I take care of the rest of the family needs and have a business of my own. We both work from home. My son's condition is less manageable than hers. They are both geniuses.

My son has a weak executive function. We moved to the best school district in our state with services to help him. He is 2 grades ahead in school. He is medicated with anti-anxiety and ADD medication, as is my wife, which make him functional. He is in advanced classes. But...

I have to micromanage so many things in his life it is exhausting. If I don't the situation escalates and deteriorates to the point it explodes into meltdowns.

Food - He won't make food for himself if he is doing something. Then he gets irritable and unmanageable because he is hungry and refuses to eat until he exhausts me and himself to where I find a window to feed him. This happens roughly 50% of the time. Other times he realizes it and makes his own food if no one is around to help him and something easy is available like a frozen food.

School Work - He does his school work when he wants to if he wants to. I have remind him of his work and manipulate the situation to get him to do it. It's a constant mental game. He is a "B" student with an "A" education that always scores the highest on state assessments.

Night Time - I have to put controls on the night time process that literally takes 3 hours so he falls asleep. Any disruption in that process he is up well past midnight.

He can't do physical activity due to exertional asthma. He was taking martial arts till he collapsed and couldn't breath. It slowly developed over a span of 5 years.

If you meet him he seems NT. You would have to spend time with him to notice something was different.

From what I have observed his perception of time and executive function just aren't there. He is learning executive function at school but I see little improvement.

#1 Punishment doesn't work it only escalates.
#2 I can't in anyway get upset or he has a meltdown.
#3 I literally have to keep an eye on or ear open on him and my wife because they set each other off because he starts getting hyper and she can be that way too on occasion.
#4 Neither realize and preempt the situation so I constantly have to referee.

He is a good kid. He is kind. He likes school. Teachers like him. He doesn't lie. He isn't destructive like my friend's kid with ADHD. His intelligence keeps him afloat at school. I also don't ever have to sit with him to do homework for an hour because he gets everything. But I would rather do that for an hour than what is happening now.

Frankly I don't know how I stay calm in our home. I manage two ASD people + a business. I am mentally exhausted daily. My wife alone is easy. Our son is the only thing that drastically stresses her out.

I don't know how to improve this situation or help, or if I can. Is there a magical age where all this shakes out? Am I just stuck working around it till he grows up? Which is what I currently believe.

I feel like he has anxiety attacks and meltdowns around me because he feels he is disappointing me. I don't raise my voice but it is hard for me to hide my frustration. I just can't fake a happy face. I am right or is this some defense mechanism that he knows if he melts down I go away till he calms down or gets his way? Which if I stand my ground it gets worse to the nth degree.

I really need a vacation from everything.

I feel your frustration.. I am the mother of 5 kids (all adults now) I had two girls and then 3 boys, only one had ASD. At the time I had never even thought my son had something other than being what I thought was just acting up. As you said discipline worked with all my kids except him. IT was like he would never listen to me. Then what do you do? Time outs didn't work, even spankings didn't work, getting angry and yelling didn't work... nothing seemed to work. He is very intelligent but didn't want to finish school work, and nothing you could do would make him if he didn't want too.

I won't lie to you and say it was easy or I didn't feel like I was at my wits end at times. We went through this because I didn't pick up signs of anything really wrong other than he was just a stinker, as they used to say boys will be boys. I felt always that he was different though.

It wasn't until later when a doctor picked it up and told me to have him tested, he was already in his 20's (about 26)but still living at home and it didn't seem that he wanted to go out of the house much unless he was with all of us together. Never alone. He was very very smart but had no social skills at all. Never had a friend to hang out with, he always was with his brothers or sisters.

This site has helped me a lot to figure him out and knowing that he probably did get frustrated and felt alone within his own mind. Like being trapped inside his own head and never able to get out. I found out that sitting down and talking to him about something was much easier than disciplining him for something. Even now and he is 32 some days he is like any other person but sometimes he doesn't want to talk, he finds no reason to just chit chat. He is more quiet and to himself. Other times he can open up and we talk like anyone else. I just have to sense his mood to see which way to go.

He has said that he feels nothing inside and that every motion or emotion is just a mask or for show because that is what other people do or what he feels he should do. It isn't a natural thing like NT's feel. His brain works differently than our and we can't expect that it will ever change just like we can't think like they do. Sure some things are the same as us but some things will never be. It is much harder when they are little because we need to teach them and expect them to listen and obey us so they don't get hurt and can function good in society.

Now that he is older and I am the one who understands him more, it is easier. I still get upset sometimes but it is mostly good. He still always thinks he is right and can't take other people's opinions because that goes against what he thinks. So I won't argue the fact, just let him have his say so which is usually quite frustrating and if I don't agree with him he cannot see why and will say something like you think like a moron. I will just not talk about the subject anymore and drop it. He has trouble expressing any feeling like he will never say I love you, or thank you mom, it is almost like he expects I will just do things for him. One time he said I appreciate everything you do for me. And one time he said I love you too.

My other son thinks he is more of a narcissist because everything is for him. He doesn't really think about anyone else but what he wants. I tell my other son that he doesn't have the same feelings we do, his brain processes things differently and a lot of times they look like they are demanding because they are so great and you are just a peon to wait on them. Most people would see it that way. You have to get inside their brain and know that is just them. Try not to get frustrated and just let it be. They are the ones living in a world that wasn't meant for them. Like you doing something and having someone always tell you you are doing it wrong. They do so many things right and are loving and kind in their own way, just we are programmed differently and can't always see the good in someone who does things differently than we do. Frustrating YEP it is, can you learn to work with it? Yep you can!

 

[The Lorax]

@Major Tom - If I can't wake him up it's because he hasn't gotten a good night sleep. He has a shifted circadian rhythm. My wife has the same thing. We have to use melatonin to get him to sleep. Just some night something happens and he can't sleep well. We use natural consequences for his action. Thanks for the input. I like hearing about the different issues and knowing this symptom is autism and how to deal with it. My wife covers a lot of it but he is different than she is. She was socially off but was an "A" student and gave no trouble to her mom. She was also incredibly independent as a child.

@VAW ....it is almost like he expects I will just do things for him... Yup. My son helps if asked but is clueless about helping himself most of the time. I can imagine raising X kids before him and he comes and everything you know feels wrong. Then because he is a certain way and requires a certain kind of kid raising you have to figure it out. He can't tell you what it is and ASD kids all have different needs so there isn't one set of examples to follow. Every person I know that has an ASD child share commonalities on traits but none are alike. Each are very different. Parents have to figure out what works and what doesn't from clues. The poor kid can't explain what works and what doesn't. Every second that frustrates you translates to the child because they feel it. it's a cascading effect. We suspected when he was a baby. I took some online survey when he was 2 but he came back negative. He lined up cars and never had imaginative play. Then we got him tested at the school at 4 years old. PASS. They were blown aware because he was thinking like a 6 year old. But no issues. He made eye contact often enough to pass. Only in 3rd grade with a teacher I didn't like but respected did we get him tested. I said "just speak your mind. That's how we are. Don't sugar coat it". And the teacher laid it out very technically illegally. She was from New York City so ya say it how it is which is how we like it. She just thought he had ADD. But we had an excellent psychiatrist that was also a psychologist. It took him 5 weeks to realize he was on the spectrum. He thought our son had what I call "only child syndrome". Children with siblings learn social intelligence faster than only children. But only children resist cults and groups better than children with siblings. But all these stories and all the ones I read were more difficult than ours..... unless he was off the medication. The anti-depressant medication (Prozac, Citilopram) saved him and us. My wife was at a breaking point. If you haven't suggested anti-depressants for him try it. There are case studies that show it helps a good number of ASD people. Also if you live in the USA you can apply for Social Security for your son but you need a lawyer. They will reject you the first time. You do it the day they turn 18.

 

[unperson]

Autistics can have over-acute hearing - I use earplugs for sleeping a lot of the time, had to when i lived in cities, you could try a child size one. There is a small amount of pressure on the ear canal, but not enough to bother me. Crickets chirping, car goes by, I don't hear them.

Is he in school? How come he's not getting lunch at school? It's not unreasonable for a 14 yr old to be expected to be provided with adequate nutrition, it's actually a legal right.

All parents complain about teenagers, dad. He's not doing drugs and joining gangs.

 

[The Lorax]

We feed him right. Never soda and he hates them. Never hard candy and he hates them. Ice cream once in a while. He gets his veggies, whole grains, protein. We have no bad snacks in the house either. Hard to get good ones.

He isn't into any of those things because his parents are real good people who love him, explain things, and guide him with wisdom and brainwashing from birth. Like he will never do drugs because he values his intellect and drugs damages that. Never smokes because he wants to live a long time. Zero interest in booze because.... well mom drinks on occasion, gets a little drunk, and gets a lot obnoxious.

"Dad, mom's drunk again and she won't leave me alone!!"

He is interested in girls, A LOT! Gave him the "you get a girl pregnant your life is OVER! No partying with friends, no fun, no you time, no freedoms, you will be poor."

Oddly he has been excellent the last 4 days. Very strange. Probably all the advice I got at this forum.

 

[VAW]

@Major Tom - If I can't wake him up it's because he hasn't gotten a good night sleep. He has a shifted circadian rhythm. My wife has the same thing. We have to use melatonin to get him to sleep. Just some night something happens and he can't sleep well. We use natural consequences for his action. Thanks for the input. I like hearing about the different issues and knowing this symptom is autism and how to deal with it. My wife covers a lot of it but he is different than she is. She was socially off but was an "A" student and gave no trouble to her mom. She was also incredibly independent as a child.

@VAW ....it is almost like he expects I will just do things for him... Yup. My son helps if asked but is clueless about helping himself most of the time. I can imagine raising X kids before him and he comes and everything you know feels wrong. Then because he is a certain way and requires a certain kind of kid raising you have to figure it out. He can't tell you what it is and ASD kids all have different needs so there isn't one set of examples to follow. Every person I know that has an ASD child share commonalities on traits but none are alike. Each are very different. Parents have to figure out what works and what doesn't from clues. The poor kid can't explain what works and what doesn't. Every second that frustrates you translates to the child because they feel it. it's a cascading effect. We suspected when he was a baby. I took some online survey when he was 2 but he came back negative. He lined up cars and never had imaginative play. Then we got him tested at the school at 4 years old. PASS. They were blown aware because he was thinking like a 6 year old. But no issues. He made eye contact often enough to pass. Only in 3rd grade with a teacher I didn't like but respected did we get him tested. I said "just speak your mind. That's how we are. Don't sugar coat it". And the teacher laid it out very technically illegally. She was from New York City so ya say it how it is which is how we like it. She just thought he had ADD. But we had an excellent psychiatrist that was also a psychologist. It took him 5 weeks to realize he was on the spectrum. He thought our son had what I call "only child syndrome". Children with siblings learn social intelligence faster than only children. But only children resist cults and groups better than children with siblings. But all these stories and all the ones I read were more difficult than ours..... unless he was off the medication. The anti-depressant medication (Prozac, Citilopram) saved him and us. My wife was at a breaking point. If you haven't suggested anti-depressants for him try it. There are case studies that show it helps a good number of ASD people. Also if you live in the USA you can apply for Social Security for your son but you need a lawyer. They will reject you the first time. You do it the day they turn 18.

Thank you for your information too.... I may add that even the best intentions or recommendations won't make them do it. Especially when they get older. My son almost died, he has a bad case of U.C. and almost bled out. I kept telling him to go to the doctor but he wouldn't. My son is 6'3" tall and I couldn't make him go. Finally he did go, when we went in the doctor said he is white as a ghost, I don't even know how he is still able to walk. You have like an 18 count of blood in your body and he had 4 left. he went in an ambulance to the hospital and took two transfusions of blood. After they turn 18 I can no longer sign for him, call places for him, ask about anything because he was an adult. Only his medical he signed a paper that I could speak for him and question things for him.

He is on a lot of medications right now, and he is on disability. Took 8 years to get him on that and still it is reviewed every two years. First time we applied like you said he was denied, second time had a disability advocate and was denied again, third time he had a lawyer and they granted him ssi/disability but at the two year review they denied him and said he had to now pay back everything he had gotten those two years...It went back to court and he was granted it again and is still on it now. A long road!!!

A lot of things are very frustrating, I am the one who is always on the phone for him, making appointments, getting his medicines, groceries, handling still what ever troubles he has. He gets terrible migraines which he has to go to the hospital and take a shot to make it go away enough to tolerate it. During one of our worst snow/ice storms I had to take him to the hospital at 10pm, takes me half an hour to get to his house where he lives with my other son and it was so slippery I fell on the ice walking in to the hospital had to fill out an accident report, then drive him back home and I don't even know how I made it back home it was so bad, almost got stuck a few times. But got back home about 1am in the morning, and he did text me to make sure I was home but there are so many things that are still hard with him... my other kids all have good jobs and all have things going on in their life, he still is basically alone. It is a pretty thankless job, like the other day he was talking about something and I gave him my opinion and he said yes well your opinion doesn't really matter to me. That makes me feel bad like why am I doing all this stuff for you and you don't even appreciate it, in fact gets mad at me at times for it. Then I realize again that he thinks differently and it wasn't meant to hurt me and I keep going. I remember back to when he was little and my mother said oh you are grandma's boy! and he said NO I am mama's boy!!!! Yea he still is!

 

[The Lorax]

I can only give you a possible logical explanation why he is unappreciative. Like you said he is trapped in his own world and there is no escape from it. I am sure within all the chemical imbalances in his brain there is a part that is incredibly frustrated that he can't do things by himself and he lashes out at you because you are there.

There is a direct correlation between empathy and suffering. If you suffer you have empathy for others. You have more empathy for those that suffered in the same way as you did. Suffering could also mean your situation where you see your child suffering and you can't do anything to improve it, just mitigate it. You're playing the game of life to only not lose as is he. His disability prevents him from winning.

The point is that I have associates that were born well off, no neurological disabilities, raised by good parents, went to good schools, had healthy environments, had healthy diets well relatively to most of the world, and are successful. Yet they have that mentality of "he needs to just pick himself up and do something with his life". Because they were born under all the right circumstances with the right genetics success was simple. Most of them had superior skills in some category that is accepted by society as a positive. Like high social intelligence, high enough I.Q. to get educated, excellent brain chemistry that lowers anxiety, etc, etc, etc. They just don't get it.

I ask them how their life was just like that list above.
Then I tell them "do you realize that 1 in 1000 people live like you do around the world? You aren't rich but you are upper middle class. You have everything available for a good life a rich person has." Sometimes they see the light for a day then revert to their narrow minded thinking. Like in your case with the courts. The judges do not understand the level of impairment your son has, I do. You take away my wife's anti-depressant she will sit in a room all day and read doing nothing. Without her ADD medication she can't work properly and gets overwhelmed. As you age it gets worse because the brain mechanisms don't work as well.

As for me... The only bad part of my life was that I was raised in a slightly negative environment and I think I had ADD as a child which I overcame.... or I was bored at school, not sure. I am incredibly intelligence, low stress, and in my adulthood I because highly organization. I have very good social skills because I taught myself to be better than average, no depression. But I read a lot and witnessed the growing up of my child and the swings of my wife. Now I have this perspective. 20 years ago all this wasn't in my head. I knew nothing, didn't think of it. All I knew is that I found work I enjoyed and was challenging.

So you have a whole society of people that are in charge that have a good life due to the roll of the genetic and environmental live that have no understanding of this kind of disability. Unless a disability is right in their face like a blind person, a paralyzed person, they just don't see it. Mental disability doesn't exist in their brains. These mentally disabled people are lazy in their heads.

I did speak with a lawyer about disability. She is a specialized lawyer in it. She told me she constantly has to explain to the courts that just because someone graduates high school with good grades doesn't translate that they can function in the real world. Social Security always denies initial claims for autism. You have to go to court to force the issue.

My opinion there should be facilities, group homes, where people like your son can go and get proper help in a healthy environment. Not saying your environment isn't good but I am sure you are stressed beyond belief. Even I get overwhelmed here. My son isn't nearly in such a disabled state as your son. But I go two of them in the house. I run everything like you. Groceries, bills, cleaning, walk the dog, make sure schoolwork is done, medication, remind my wife of appointments. At least for her work she is organized. It's not even that each task is difficult, it's just that there are so many I have to constantly remind myself of and I use a calendar. I am sure it's the same way with you. Constant to do list and you can't stop or it all falls apart. Don't even get me starts on the cluster **** between the doctors, health insurance, and pharmacies that i have to stay on top of for their medications. Then there is my mother who is an hour away and refuses to move into assisted living even though it's all setup. Then there are 2 old lady neighbors who constantly ask for my help.... I just realized why I am overwhelmed. Too many people asking for help and only 1 of me.

Anyways I feel for you and your situation. And it sucks your son is stubborn to boot. My son realizes I am much wiser than he is and listens to me on health issues.

 

[VAW]

I can only give you a possible logical explanation why he is unappreciative. Like you said he is trapped in his own world and there is no escape from it. I am sure within all the chemical imbalances in his brain there is a part that is incredibly frustrated that he can't do things by himself and he lashes out at you because you are there.

There is a direct correlation between empathy and suffering. If you suffer you have empathy for others. You have more empathy for those that suffered in the same way as you did. Suffering could also mean your situation where you see your child suffering and you can't do anything to improve it, just mitigate it. You're playing the game of life to only not lose as is he. His disability prevents him from winning.

The point is that I have associates that were born well off, no neurological disabilities, raised by good parents, went to good schools, had healthy environments, had healthy diets well relatively to most of the world, and are successful. Yet they have that mentality of "he needs to just pick himself up and do something with his life". Because they were born under all the right circumstances with the right genetics success was simple. Most of them had superior skills in some category that is accepted by society as a positive. Like high social intelligence, high enough I.Q. to get educated, excellent brain chemistry that lowers anxiety, etc, etc, etc. They just don't get it.

I ask them how their life was just like that list above.
Then I tell them "do you realize that 1 in 1000 people live like you do around the world? You aren't rich but you are upper middle class. You have everything available for a good life a rich person has." Sometimes they see the light for a day then revert to their narrow minded thinking. Like in your case with the courts. The judges do not understand the level of impairment your son has, I do. You take away my wife's anti-depressant she will sit in a room all day and read doing nothing. Without her ADD medication she can't work properly and gets overwhelmed. As you age it gets worse because the brain mechanisms don't work as well.

As for me... The only bad part of my life was that I was raised in a slightly negative environment and I think I had ADD as a child which I overcame.... or I was bored at school, not sure. I am incredibly intelligence, low stress, and in my adulthood I because highly organization. I have very good social skills because I taught myself to be better than average, no depression. But I read a lot and witnessed the growing up of my child and the swings of my wife. Now I have this perspective. 20 years ago all this wasn't in my head. I knew nothing, didn't think of it. All I knew is that I found work I enjoyed and was challenging.

So you have a whole society of people that are in charge that have a good life due to the roll of the genetic and environmental live that have no understanding of this kind of disability. Unless a disability is right in their face like a blind person, a paralyzed person, they just don't see it. Mental disability doesn't exist in their brains. These mentally disabled people are lazy in their heads.

I did speak with a lawyer about disability. She is a specialized lawyer in it. She told me she constantly has to explain to the courts that just because someone graduates high school with good grades doesn't translate that they can function in the real world. Social Security always denies initial claims for autism. You have to go to court to force the issue.

My opinion there should be facilities, group homes, where people like your son can go and get proper help in a healthy environment. Not saying your environment isn't good but I am sure you are stressed beyond belief. Even I get overwhelmed here. My son isn't nearly in such a disabled state as your son. But I go two of them in the house. I run everything like you. Groceries, bills, cleaning, walk the dog, make sure schoolwork is done, medication, remind my wife of appointments. At least for her work she is organized. It's not even that each task is difficult, it's just that there are so many I have to constantly remind myself of and I use a calendar. I am sure it's the same way with you. Constant to do list and you can't stop or it all falls apart. Don't even get me starts on the cluster **** between the doctors, health insurance, and pharmacies that i have to stay on top of for their medications. Then there is my mother who is an hour away and refuses to move into assisted living even though it's all setup. Then there are 2 old lady neighbors who constantly ask for my help.... I just realized why I am overwhelmed. Too many people asking for help and only 1 of me.

Anyways I feel for you and your situation. And it sucks your son is stubborn to boot. My son realizes I am much wiser than he is and listens to me on health issues.

If you don't mind I would like to move to chat with you.... We seem to be closely in the same situation and maybe our idea's on things could be a help to both of us.