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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

advice from those of you that are autistic...

Posted by on Jul. 18, 2014 at 11:19 PM
  • 35 Replies
1 mom liked this

My son is going through a very emotional stage, anxiety, fear, worry, then he will seem fine for a bit. I try to be sympathetic and make sure to keep the stress to a minimum but I know I am constantly pointing out things that he needs to work on and I do loose my temper when he won't stop being compulsive or talking endlessly...I just want to understand how he feels. Can you tell me how it feels to process the world through autistic eyes so I can relate better to my son and help him more? You guys are the experts.  Thank you!  zo

by on Jul. 18, 2014 at 11:19 PM
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Replies (1-10):
Bellavy
by Member on Jul. 19, 2014 at 12:12 AM
I would like to know too
Logansmom1999
by Kristina on Jul. 19, 2014 at 8:39 AM

That is the million dollar question.

A_McCool
by Bronze Member on Jul. 19, 2014 at 9:46 AM
1 mom liked this

Can you tell me how it feels to process the world through autistic eyes so I can relate better to my son and help him more? 

That is a rather broad question, and I'm not sure where to start with an answer.  

The talking endlessly.  I do that when I'm super excited and interested in something. It is extremely fun to share everything I know about a topic with someone else.  I, also, have a complete lack of  understanding (and sometimes caring) for when other people aren't quite as interested in something. 

I'm not quite sure exactly what you mean by being compulsive.

lucasmadre
by Kari on Jul. 19, 2014 at 1:14 PM

OK...great questions. I will be more specific-

When my son decides that he wants to get the latest Ipod it is all he can think about, all he can talk about even after I explain that we can not afford it right now and we will have to wait and save. He begs, pleads, comes up with unrealistic ideas of how we could raise the money etc. he never can take no for an answer no matter how unrealistic his request is. If the things he wants are at all reasonable I do my best to help him aquire them or do them but he is never satisfied. Is this an asd thing or is it my son?

Sometimes he will shut down completely, not answer, not talk, avoid everyone regardless of who they are and retreat but at the same him want me to sit right next to him or not be too far away...he loves to game on the computer, says it is relaxing and if I let him it is all he would do.

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.


Quoting A_McCool:

Can you tell me how it feels to process the world through autistic eyes so I can relate better to my son and help him more? 

That is a rather broad question, and I'm not sure where to start with an answer.  

The talking endlessly.  I do that when I'm super excited and interested in something. It is extremely fun to share everything I know about a topic with someone else.  I, also, have a complete lack of  understanding (and sometimes caring) for when other people aren't quite as interested in something. 

I'm not quite sure exactly what you mean by being compulsive.


A_McCool
by Bronze Member on Jul. 19, 2014 at 1:50 PM
3 moms liked this

First, by not caring, I don't mean a lack of empathy or not caring about someone else's feelings at all or anything like that.  I mean at that moment the intensity of the interest and excitement is such that I don't care in that particular moment.  It is as if my excitement/interest level is directly attached to my mouth.  I, also, have trouble multitasking and focusing my attention on multiple things so in that moment all of my attention is focused on the interest and what I'm saying.  If you are looking for a practical solution, perhaps get him a voice recorder so that when he feels he needs to talk about something, and you feel you need him to be quiet he can record it for you to listen to later. 

Yes, I can get stuck on things.  However, they are generally more realistic because I'm 28...lol.

Once my mind is made up it is hard to change it.  I've concluded it is because I'm slow to process new information and have a bit of anxiety so I plan things out in great detail to know what to expect.  It works great for things that go as planned and not so great for when things don't.  I'm, also, an adult and have more control over things so more often than not now things go pretty much as planned.  

The age your son is now.  It is tough because he is a kid and doesn't quite have a full grasp of how things should or will work out yet still has the need to plan everything to death which is likely a combination of needed to process things and possibly some anxiety.  As an adult,  I've found it works best for me to plan out and stick to a routine as much as possible.  The predictability in most of my life allows my brain to be a bit more flexible in other parts of my life.  I still catch myself becoming rigid and insisting upon certain things or being thrown off by my husband having different ideas about how we should go about something, and we've found that for me it works best to let me go through that.  It will last 5-15 mintues of me repeating myself and/or pacing, and, then, when I'm done I can accept whatever he said without issue and/or discuss it with him.

I cannot be reasoned with in that state and trying just makes me become more rigid and insistent.  We wasted a good deal of our marriage fighting against my autism (because it was undiagnosed) instead of working with it.  

As a kid, the rigidity was much more difficult for me because I felt out of control of most of my life.  Everyone else made all of the important decisions, and I was just along for the ride.  Now, here is where personality makes a big difference.  I didn't react to that with much resistance. I just accepted that was life and became overly compliant in most aspects of life and melted down at home quite a bit.  I think the ages of 10-12ish were probably the hardest for my mom.  Now, she says I was a great kid and pretty much denies any issues so i can't say that with any certainty.

As far as the shutting down but wanting people near, I do that sometimes too.  I like having people near me because I love them and know they love me, but I'm so overwhelmed with whatever is going on that I cannot communicate with them.  I need quiet to recenter myself so that I can carry on with life, but I need people close because I, also, need to feel that I'm loved even though I'm having  a hard time.

I love gaming as well.  If it weren't for the structure that I impose on myself or the fact that I have kids to feed and play with, I could probably spend most of the day gaming as well.  

I think that the best thing my  husband and I have done is accept that being autistic is a major part of my identity and impacts the vast majority of my life.  My autism isn't something to hate, and there is no nonautistic version of me.  It is part of me, and it always will be. This has allowed us to work with my autism instead of trying to fight against it.

Quoting lucasmadre:

OK...great questions. I will be more specific-

When my son decides that he wants to get the latest Ipod it is all he can think about, all he can talk about even after I explain that we can not afford it right now and we will have to wait and save. He begs, pleads, comes up with unrealistic ideas of how we could raise the money etc. he never can take no for an answer no matter how unrealistic his request is. If the things he wants are at all reasonable I do my best to help him aquire them or do them but he is never satisfied. Is this an asd thing or is it my son?

Sometimes he will shut down completely, not answer, not talk, avoid everyone regardless of who they are and retreat but at the same him want me to sit right next to him or not be too far away...he loves to game on the computer, says it is relaxing and if I let him it is all he would do.

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.

Quoting A_McCool:

Can you tell me how it feels to process the world through autistic eyes so I can relate better to my son and help him more? 

That is a rather broad question, and I'm not sure where to start with an answer.  

The talking endlessly.  I do that when I'm super excited and interested in something. It is extremely fun to share everything I know about a topic with someone else.  I, also, have a complete lack of  understanding (and sometimes caring) for when other people aren't quite as interested in something. 

I'm not quite sure exactly what you mean by being compulsive.


lady_katie
by Silver Member on Jul. 19, 2014 at 7:51 PM
4 moms liked this

When I'm in everyone elses world, so many things feel like a dreaded chore or obligation. Even doing something as simple as taking a shower bores me so much that I have to remind myself that hygiene is not optional. Often times, I get so bored that I tune out and day dream about things that interest me unintentionally. Other times, I become so overwhelmed by my environment that my brain starts automatically blocking out input, and I start shutting down and zoning out with necessarily wanting to. Then there are the ideal times when I can voluntarily enter my own world because I have some free time to sit down and do as I please (like right now!). These are all similar in that I'm kind of living in my own head at those times. I can escape from the boredom, chaos, and dreaded obligations of this world, and that's very comforting for me. 

If I'm escaping involuntarily because I'm overwhelmed, then I do have a very difficult time caring about what other people are thinking and feeling. This is because what I'm experiencing at those times is like a crisis that I'm trying to manage. I guess it would sort of be like trying to put out a fire, with someone standing next to you explaining that they're feeling hurt by your behavior. Of course, the fire is going to get all of your attention in that moment. It's nothing personal, and it's not that you don't care, it's just that you have a huge priority to take care of. Otherwise, being in my own world for the fun of it probably feels something like what you would feel when you get into reading a good book or watching an interesting movie that you're enjoying. It's relaxing, it takes my mind off of my troubles, and I feel refreshed and renewed when I come back to reality. 

To address talking people's ears off endlessly - I do tend to do that. Special interests truly are obsessions. They are more than just an interest, they are all consuming. Sometimes they are all I can think about, and it would take everything I have not to talk about them. I don't want to upset anyone, it's just self control slips away from me at those times. 

I do understand how you feel though. My husband is also autistic, and he goes on and on about lightbulbs of all things! Ugh, I just want to stick my head in the sand! He's perfectly aware that I couldn't care less, but he'll still insist on just mentioning "one more thing". I can't get too mad at him though, because I put him through the same thing all the time. We spend a lot of time boring each other to tears lol, but I guess that's because we understand each others desire to monologue. Sometimes, he'll just get up and walk away though, and that seems to shut me up. I'm not offended because I know that I should have stopped talking long before then. 

I know that it's hard to not become emotionally wrapped up in these behaviors (I go through it in different ways with my little boy), but try to remind yourself that it's just part of autism, and that we do think and relate differently, but it doesn't mean that we don't care. 

Quoting lucasmadre:

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.


darbyakeep45
by Darby on Jul. 20, 2014 at 8:45 AM

Hugs mama!

TheJerseyGirl
by Michele on Jul. 20, 2014 at 9:34 AM

 Love this. Thank for answering...I'm always looking for the perspective of other autistic adults too!

Quoting lady_katie:

When I'm in everyone elses world, so many things feel like a dreaded chore or obligation. Even doing something as simple as taking a shower bores me so much that I have to remind myself that hygiene is not optional. Often times, I get so bored that I tune out and day dream about things that interest me unintentionally. Other times, I become so overwhelmed by my environment that my brain starts automatically blocking out input, and I start shutting down and zoning out with necessarily wanting to. Then there are the ideal times when I can voluntarily enter my own world because I have some free time to sit down and do as I please (like right now!). These are all similar in that I'm kind of living in my own head at those times. I can escape from the boredom, chaos, and dreaded obligations of this world, and that's very comforting for me. 

If I'm escaping involuntarily because I'm overwhelmed, then I do have a very difficult time caring about what other people are thinking and feeling. This is because what I'm experiencing at those times is like a crisis that I'm trying to manage. I guess it would sort of be like trying to put out a fire, with someone standing next to you explaining that they're feeling hurt by your behavior. Of course, the fire is going to get all of your attention in that moment. It's nothing personal, and it's not that you don't care, it's just that you have a huge priority to take care of. Otherwise, being in my own world for the fun of it probably feels something like what you would feel when you get into reading a good book or watching an interesting movie that you're enjoying. It's relaxing, it takes my mind off of my troubles, and I feel refreshed and renewed when I come back to reality. 

To address talking people's ears off endlessly - I do tend to do that. Special interests truly are obsessions. They are more than just an interest, they are all consuming. Sometimes they are all I can think about, and it would take everything I have not to talk about them. I don't want to upset anyone, it's just self control slips away from me at those times. 

I do understand how you feel though. My husband is also autistic, and he goes on and on about lightbulbs of all things! Ugh, I just want to stick my head in the sand! He's perfectly aware that I couldn't care less, but he'll still insist on just mentioning "one more thing". I can't get too mad at him though, because I put him through the same thing all the time. We spend a lot of time boring each other to tears lol, but I guess that's because we understand each others desire to monologue. Sometimes, he'll just get up and walk away though, and that seems to shut me up. I'm not offended because I know that I should have stopped talking long before then. 

I know that it's hard to not become emotionally wrapped up in these behaviors (I go through it in different ways with my little boy), but try to remind yourself that it's just part of autism, and that we do think and relate differently, but it doesn't mean that we don't care. 

Quoting lucasmadre:

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.

 


lucasmadre
by Kari on Jul. 20, 2014 at 9:51 AM

I can not begin to thank you for your insight and that gift and what it means to me. You were frank and honest about very personal things and now I have a better idea of how my son is feeling and why he chooses the path he does. I KNOW it will make me a better parent so I can't say enough how much your time and effort mean to me. I also want to say that hearing how successful you are in life makes me have hope that my son will also have that chance.  THANK YOU!!  xo

Quoting A_McCool:

First, by not caring, I don't mean a lack of empathy or not caring about someone else's feelings at all or anything like that.  I mean at that moment the intensity of the interest and excitement is such that I don't care in that particular moment.  It is as if my excitement/interest level is directly attached to my mouth.  I, also, have trouble multitasking and focusing my attention on multiple things so in that moment all of my attention is focused on the interest and what I'm saying.  If you are looking for a practical solution, perhaps get him a voice recorder so that when he feels he needs to talk about something, and you feel you need him to be quiet he can record it for you to listen to later. 

Yes, I can get stuck on things.  However, they are generally more realistic because I'm 28...lol.

Once my mind is made up it is hard to change it.  I've concluded it is because I'm slow to process new information and have a bit of anxiety so I plan things out in great detail to know what to expect.  It works great for things that go as planned and not so great for when things don't.  I'm, also, an adult and have more control over things so more often than not now things go pretty much as planned.  

The age your son is now.  It is tough because he is a kid and doesn't quite have a full grasp of how things should or will work out yet still has the need to plan everything to death which is likely a combination of needed to process things and possibly some anxiety.  As an adult,  I've found it works best for me to plan out and stick to a routine as much as possible.  The predictability in most of my life allows my brain to be a bit more flexible in other parts of my life.  I still catch myself becoming rigid and insisting upon certain things or being thrown off by my husband having different ideas about how we should go about something, and we've found that for me it works best to let me go through that.  It will last 5-15 mintues of me repeating myself and/or pacing, and, then, when I'm done I can accept whatever he said without issue and/or discuss it with him.

I cannot be reasoned with in that state and trying just makes me become more rigid and insistent.  We wasted a good deal of our marriage fighting against my autism (because it was undiagnosed) instead of working with it.  

As a kid, the rigidity was much more difficult for me because I felt out of control of most of my life.  Everyone else made all of the important decisions, and I was just along for the ride.  Now, here is where personality makes a big difference.  I didn't react to that with much resistance. I just accepted that was life and became overly compliant in most aspects of life and melted down at home quite a bit.  I think the ages of 10-12ish were probably the hardest for my mom.  Now, she says I was a great kid and pretty much denies any issues so i can't say that with any certainty.

As far as the shutting down but wanting people near, I do that sometimes too.  I like having people near me because I love them and know they love me, but I'm so overwhelmed with whatever is going on that I cannot communicate with them.  I need quiet to recenter myself so that I can carry on with life, but I need people close because I, also, need to feel that I'm loved even though I'm having  a hard time.

I love gaming as well.  If it weren't for the structure that I impose on myself or the fact that I have kids to feed and play with, I could probably spend most of the day gaming as well.  

I think that the best thing my  husband and I have done is accept that being autistic is a major part of my identity and impacts the vast majority of my life.  My autism isn't something to hate, and there is no nonautistic version of me.  It is part of me, and it always will be. This has allowed us to work with my autism instead of trying to fight against it.

Quoting lucasmadre:

OK...great questions. I will be more specific-

When my son decides that he wants to get the latest Ipod it is all he can think about, all he can talk about even after I explain that we can not afford it right now and we will have to wait and save. He begs, pleads, comes up with unrealistic ideas of how we could raise the money etc. he never can take no for an answer no matter how unrealistic his request is. If the things he wants are at all reasonable I do my best to help him aquire them or do them but he is never satisfied. Is this an asd thing or is it my son?

Sometimes he will shut down completely, not answer, not talk, avoid everyone regardless of who they are and retreat but at the same him want me to sit right next to him or not be too far away...he loves to game on the computer, says it is relaxing and if I let him it is all he would do.

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.

Quoting A_McCool:

Can you tell me how it feels to process the world through autistic eyes so I can relate better to my son and help him more? 

That is a rather broad question, and I'm not sure where to start with an answer.  

The talking endlessly.  I do that when I'm super excited and interested in something. It is extremely fun to share everything I know about a topic with someone else.  I, also, have a complete lack of  understanding (and sometimes caring) for when other people aren't quite as interested in something. 

I'm not quite sure exactly what you mean by being compulsive.



lucasmadre
by Kari on Jul. 20, 2014 at 9:56 AM

WOW, what a gift of insight you have given me. Thank you so much for that time and the humor of it all too! Your husband and his lightbulbs...I so get that one!!! The way you explained it I can totally relate, I have my times where I just need alone time, to zone out, I GET THAT! Your help has been amazing...thank you from the bottom of my heart!!!  xo

Quoting lady_katie:

When I'm in everyone elses world, so many things feel like a dreaded chore or obligation. Even doing something as simple as taking a shower bores me so much that I have to remind myself that hygiene is not optional. Often times, I get so bored that I tune out and day dream about things that interest me unintentionally. Other times, I become so overwhelmed by my environment that my brain starts automatically blocking out input, and I start shutting down and zoning out with necessarily wanting to. Then there are the ideal times when I can voluntarily enter my own world because I have some free time to sit down and do as I please (like right now!). These are all similar in that I'm kind of living in my own head at those times. I can escape from the boredom, chaos, and dreaded obligations of this world, and that's very comforting for me. 

If I'm escaping involuntarily because I'm overwhelmed, then I do have a very difficult time caring about what other people are thinking and feeling. This is because what I'm experiencing at those times is like a crisis that I'm trying to manage. I guess it would sort of be like trying to put out a fire, with someone standing next to you explaining that they're feeling hurt by your behavior. Of course, the fire is going to get all of your attention in that moment. It's nothing personal, and it's not that you don't care, it's just that you have a huge priority to take care of. Otherwise, being in my own world for the fun of it probably feels something like what you would feel when you get into reading a good book or watching an interesting movie that you're enjoying. It's relaxing, it takes my mind off of my troubles, and I feel refreshed and renewed when I come back to reality. 

To address talking people's ears off endlessly - I do tend to do that. Special interests truly are obsessions. They are more than just an interest, they are all consuming. Sometimes they are all I can think about, and it would take everything I have not to talk about them. I don't want to upset anyone, it's just self control slips away from me at those times. 

I do understand how you feel though. My husband is also autistic, and he goes on and on about lightbulbs of all things! Ugh, I just want to stick my head in the sand! He's perfectly aware that I couldn't care less, but he'll still insist on just mentioning "one more thing". I can't get too mad at him though, because I put him through the same thing all the time. We spend a lot of time boring each other to tears lol, but I guess that's because we understand each others desire to monologue. Sometimes, he'll just get up and walk away though, and that seems to shut me up. I'm not offended because I know that I should have stopped talking long before then. 

I know that it's hard to not become emotionally wrapped up in these behaviors (I go through it in different ways with my little boy), but try to remind yourself that it's just part of autism, and that we do think and relate differently, but it doesn't mean that we don't care. 

Quoting lucasmadre:

I guess what I wonder is how does it feel when he is in his own world? Why does he not care if he is upsetting someone he loves? Is he unaware or like you said "just doesn't care." I know he has empathy and compassion cause I have seen him show these things many times. I guess I just wonder what it feels like to be him.


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