Autism

[Catholic_Lady]

From what i've gathered from my girlfriend, who has autism, i've noticed that a major thing is that they NEED structure in their lives. She will break down in tears if her structure gets messed with too much, or if there is no structure, because it is a core pillar of their lives. Another thing is that (at least with my girlfriend, which is exacerbated by other things) is that they can be brutally honest about how they feel or think.

Other than that, i'm really not the best on this topic, but i hope it helps people understand a little


Additional edit: Other things, thinking about it, can be "childish" behaviour. It varies from people to people, i assume, but based again on my only experience, obviously with the girlfriend, is that some things will excite her far more than most, but i don't see it as a bad thing, if she's happy, i'm all for it. She's also incredibly affectionate, though that may well have nothing to do with the autism, i'm no expert.

Dis she have delayed speech?

[Mermaid]

Here's the gist f what I went through as a kid and how it relates to the autism spectrum disorder I have: imagine being thrust into a sporting event where you don't know the rules and aren't even sure you want to play. Now imagine that th other people on the field are more interested in punishing you for not playing by the rules than letting you know what those rules even are. And then they decide they'd have more fun punishing you than actually playing and the referees only have a problem with it when you try and defend yourself. This was pretty much my experience as a kid on the spectrum in a grade school where nobody seemed to care. I came in as a kid just wanting to know what the Hell was going on and I ended it as a messed up kid who was so damaged he was convinced he was a ticking time bomb waiting to happen.

Of course, all this has been tempered by time, an environment that has been, at the very least, less consistently shitty in the past 13 years than before, therapy, and me giving myself time to learn how the world works (to an extent, anyway) .

WOW. This is mind-blowingly vivid. I am sorry you had to go through that. I can't imagine the anxiety. I really appreciate your sharing this.

[Jello]

From what i've gathered from my girlfriend, who has autism, i've noticed that a major thing is that they NEED structure in their lives. She will break down in tears if her structure gets messed with too much, or if there is no structure, because it is a core pillar of their lives. Another thing is that (at least with my girlfriend, which is exacerbated by other things) is that they can be brutally honest about how they feel or think.

Other than that, i'm really not the best on this topic, but i hope it helps people understand a little


Additional edit: Other things, thinking about it, can be "childish" behaviour. It varies from people to people, i assume, but based again on my only experience, obviously with the girlfriend, is that some things will excite her far more than most, but i don't see it as a bad thing, if she's happy, i'm all for it. She's also incredibly affectionate, though that may well have nothing to do with the autism, i'm no expert.

Dis she have delayed speech?

I am unsure whether she had delayed speech in all honesty

[Rev. Rye]

Here's the gist f what I went through as a kid and how it relates to the autism spectrum disorder I have: imagine being thrust into a sporting event where you don't know the rules and aren't even sure you want to play. Now imagine that th other people on the field are more interested in punishing you for not playing by the rules than letting you know what those rules even are. And then they decide they'd have more fun punishing you than actually playing and the referees only have a problem with it when you try and defend yourself. This was pretty much my experience as a kid on the spectrum in a grade school where nobody seemed to care. I came in as a kid just wanting to know what the Hell was going on and I ended it as a messed up kid who was so damaged he was convinced he was a ticking time bomb waiting to happen.

Of course, all this has been tempered by time, an environment that has been, at the very least, less consistently shitty in the past 13 years than before, therapy, and me giving myself time to learn how the world works (to an extent, anyway) .

WOW. This is mind-blowingly vivid. I am sorry you had to go through that. I can't imagine the anxiety. I really appreciate your sharing this.

It's all right. If it makes you feel any better, I've been in therapy for years and am doing a lot better than I used to. It should be noted that the image I presented isn't so much autism in itself as autism compounded by a horrific school life and parents who just had no idea what to properly do.

I honestly suspect being a massive movie buff and a huge reader has helped be navigate through this life, although often I can't help but be disappointed at the disconnect between fiction and nonfiction. Fun fact: When I was at Columbia working on my fiction writing degree, I once said that "the big difference between fiction and nonfiction is that one is a place where anything can happen, no matter how preposterous, and the other is fiction." Not sure if that's relevant, but I suspect it might be.

Also, since the subject has been brought up, my speech was delayed a bit, but I earned to read at about 18 months. My parents say spoken English is my second lanaguage, written English my first.

[J a c k]

TLDR lol

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Hmmmm let's see. More about my son.

He, too, needs structure. This is very difficult, since his dad and I aren't together anymore. He has two homes. He has developed a routine in my home, but none in his dad's. He always comes back very stressed and frustrated. He does appreciate always knowing upon arrival and departure how many days he will be in this place or that. We can break routine, but we need to prep him. If I know we will road trip to my sister's house on the weekend, I start telling him a few days ahead of time. No problem. He loves road trips.

He likes space. He can socialize with my son and me, but then he needs silence and alone time. That's tough, because I live in a studio. He doesn't like kids his age. He only interacts with adults or much older kids. He doesn't like to be touched, unless it's us at home. Strangers are a HUGE no. This is also difficult because he's very cute! Lol! He's going on six years old, but looks like a three year old and when he does talk, he sounds very babyish. People often stop us to tell him how cute they think he is and then he has meltdowns. Lately, also thanks to therapy, he has learned to do breathing exercises and instead of melting down, he calmly tells people no with his hands. His little hands still trembling, though. People always give us bad looks. To them, he's a jerk. He didn't understand emotions in face expressions.

This has also been taught to him with a lot of training and therapy. To him, it's not natural to acknowledge it, so it takes him a moment to observe and conclude. So a kid  can get frustrated because the kid wants to play and he doesn't. My son's first reaction is to get very annoyed and frustrated. He then takes a moment to find space between them and breathe. He observes the child. He thinks about it. Sometimes imitates the expressions for a bit. Then he will go near the child and try to smile or sign that everyhing is ok and either he tries to play, or calmy plays nearby but alone. That's just an example. When I'm around, he discusses what he sees. "Mama, he cry?" Yes, honey, he's crying. Why do you think he's crying? "He cry. He sad. I no play." Yes, he is sad, because he wants to play. Do you want to play? "No. No play. No cry. I no want he cry." Then he'll try to do something nice, but still not play. You get the picture. I don't want to teach him that he must do what makes others comfortable, though. He shouldn't sacrifice himself so others feel comfy. If he doesn't want to play, he shouldn't have to. I let him resolve it however he thinks is best.

In academics, he's great. He has always been ahead of the standards, even for children without autism when it comes to anything structured (math, alphabet, spelling). He struggles with communication, though. He cannot comprehend long sentences, sequences of events, or dialogue that contains too much information without breaking it down. When I tell him a story, I pause to let him provide input every few sentences. Crowds are a big no. Just no. He goes through phases of only whispering instead of normal voice. This is normal for him and can last from a couple hours, to months at a time. Along with selective mutism (not even whispering, just mute), he also has what is like a reverse echolalia. He needs you to repeat what he says. He will want to force you to repeat what he said. He gets very frustrated if you don't. This is interesting, because when he started speech therapy, echolalia was something he was working on, because he focused more on repeating what people said, rather than comprehension. Now he wants us to prove we comprehend him. This would be functional, but the thing is, that when strangers (like a new teacher, a classmate, etc) don't know this, he has crisis episodes when they don't repeat everything. He gets so stressed, he feels that he can't breathe. Kind of like a very deep need. A vital need. We're working on it.

He's a fun kid. We play wrestling. We play tag. Hide and seek. He draws. He plays video games. Puzzles. He's extremely funny. Very very sweet, but selective of when and with whom. He loves playing basketball with his brother. When my coworkers met him, they were skeptical about him being any different than any uptight kid with no autism. Lol! It wasn't until they spent more time with us that they began to notice. He hates them all! Lol! Except my closest buddy who's actually on his way here right now.

Basically, I want to learn as much as I can about him and the way he sees his world so we can all contribute towards his quality of life, instead of just trying to make him "normal". That wouldn't be fair. Sure, therapy helps him be more self sufficient and to be able to live with others and enjoy, but we too can learn about the way he thinks and feels in order to understand the why and how of as much as we can, and prevent things from being forced upon him when they're hurting his mind. I will not force him to be like his brother or like his classmates. He is unique. He already tries so hard. I think we can try, too.

---

[Whateverist]

Treatment of autism made the news recently but I can't recall in what form I saw it.  Apparently gene therapy is an option and there was discussion regarding whether one would want to eliminate the condition entirely by these means if it ever became possible.  As with deafness, there might be reluctance to eliminate an entire class of human beings whose functioning is atypical.  I think that is an interesting question even though the means to do this do not exist currently.

There are a number of case studies of patients receiving stem cell treatment on this site:  case studies involving stem cell treatment.  It seems that this sort of treatment is quite beneficial but I don't know how widely available it might be.  I recall now the recent account I saw was on television, perhaps on HBO's Vice news.  There were adults on that program who had undergone some sort of treatment and quite valued the process.  One older fellow with autism had made a good living doing special effects with guitars for concerts and was currently running an automotive customization shop to allow other autistics to learn a trade.

[Catholic_Lady]

Here's the gist f what I went through as a kid and how it relates to the autism spectrum disorder I have: imagine being thrust into a sporting event where you don't know the rules and aren't even sure you want to play. Now imagine that th other people on the field are more interested in punishing you for not playing by the rules than letting you know what those rules even are. And then they decide they'd have more fun punishing you than actually playing and the referees only have a problem with it when you try and defend yourself. This was pretty much my experience as a kid on the spectrum in a grade school where nobody seemed to care. I came in as a kid just wanting to know what the Hell was going on and I ended it as a messed up kid who was so damaged he was convinced he was a ticking time bomb waiting to happen.

Of course, all this has been tempered by time, an environment that has been, at the very least, less consistently shitty in the past 13 years than before, therapy, and me giving myself time to learn how the world works (to an extent, anyway) .

Does autism get better as a person becomes an adult? Despite all the trouble you had as a kid, it seems you are a very well adjusted adult now. I had no idea you were on the spectrum.

[Mermaid]

WOW. This is mind-blowingly vivid. I am sorry you had to go through that. I can't imagine the anxiety. I really appreciate your sharing this.

It's all right. If it makes you feel any better, I've been in therapy for years and am doing a lot better than I used to. It should be noted that the image I presented isn't so much autism in itself as autism compounded by a horrific school life and parents who just had no idea what to properly do.

I honestly suspect being a massive movie buff and a huge reader has helped be navigate through this life, although often I can't help but be disappointed at the disconnect between fiction and nonfiction. Fun fact: When I was at Columbia working on my fiction writing degree, I once said that "the big difference between fiction and nonfiction is that one is a place where anything can happen, no matter how preposterous, and the other is fiction." Not sure if that's relevant, but I suspect it might be.

Also, since the subject has been brought up, my speech was delayed a bit, but I earned to read at about 18 months. My parents say spoken English is my second lanaguage, written English my first.

Hearing your perspective was jarring and actually helped me really understand a little better by allowing me to climb inside a tiny fragment of your brain for a moment. I now that sounds corny, but that's what it felt like, I've been thinking about it all day.

---

TLDR lol

---

Hmmmm let's see. More about my son.

He, too, needs structure. This is very difficult, since his dad and I aren't together anymore. He has two homes. He has developed a routine in my home, but none in his dad's. He always comes back very stressed and frustrated. He does appreciate always knowing upon arrival and departure how many days he will be in this place or that. We can break routine, but we need to prep him. If I know we will road trip to my sister's house on the weekend, I start telling him a few days ahead of time. No problem. He loves road trips.

He likes space. He can socialize with my son and me, but then he needs silence and alone time. That's tough, because I live in a studio. He doesn't like kids his age. He only interacts with adults or much older kids. He doesn't like to be touched, unless it's us at home. Strangers are a HUGE no. This is also difficult because he's very cute! Lol! He's going on six years old, but looks like a three year old and when he does talk, he sounds very babyish. People often stop us to tell him how cute they think he is and then he has meltdowns. Lately, also thanks to therapy, he has learned to do breathing exercises and instead of melting down, he calmly tells people no with his hands. His little hands still trembling, though. People always give us bad looks. To them, he's a jerk. He didn't understand emotions in face expressions.

This has also been taught to him with a lot of training and therapy. To him, it's not natural to acknowledge it, so it takes him a moment to observe and conclude. So a kid  can get frustrated because the kid wants to play and he doesn't. My son's first reaction is to get very annoyed and frustrated. He then takes a moment to find space between them and breathe. He observes the child. He thinks about it. Sometimes imitates the expressions for a bit. Then he will go near the child and try to smile or sign that everyhing is ok and either he tries to play, or calmy plays nearby but alone. That's just an example. When I'm around, he discusses what he sees. "Mama, he cry?" Yes, honey, he's crying. Why do you think he's crying? "He cry. He sad. I no play." Yes, he is sad, because he wants to play. Do you want to play? "No. No play. No cry. I no want he cry." Then he'll try to do something nice, but still not play. You get the picture. I don't want to teach him that he must do what makes others comfortable, though. He shouldn't sacrifice himself so others feel comfy. If he doesn't want to play, he shouldn't have to. I let him resolve it however he thinks is best.

In academics, he's great. He has always been ahead of the standards, even for children without autism when it comes to anything structured (math, alphabet, spelling). He struggles with communication, though. He cannot comprehend long sentences, sequences of events, or dialogue that contains too much information without breaking it down. When I tell him a story, I pause to let him provide input every few sentences. Crowds are a big no. Just no. He goes through phases of only whispering instead of normal voice. This is normal for him and can last from a couple hours, to months at a time. Along with selective mutism (not even whispering, just mute), he also has what is like a reverse echolalia. He needs you to repeat what he says. He will want to force you to repeat what he said. He gets very frustrated if you don't. This is interesting, because when he started speech therapy, echolalia was something he was working on, because he focused more on repeating what people said, rather than comprehension. Now he wants us to prove we comprehend him. This would be functional, but the thing is, that when strangers (like a new teacher, a classmate, etc) don't know this, he has crisis episodes when they don't repeat everything. He gets so stressed, he feels that he can't breathe. Kind of like a very deep need. A vital need. We're working on it.

He's a fun kid. We play wrestling. We play tag. Hide and seek. He draws. He plays video games. Puzzles. He's extremely funny. Very very sweet, but selective of when and with whom. He loves playing basketball with his brother. When my coworkers met him, they were skeptical about him being any different than any uptight kid with no autism. Lol! It wasn't until they spent more time with us that they began to notice. He hates them all! Lol! Except my closest buddy who's actually on his way here right now.

Basically, I want to learn as much as I can about him and the way he sees his world so we can all contribute towards his quality of life, instead of just trying to make him "normal". That wouldn't be fair. Sure, therapy helps him be more self sufficient and to be able to live with others and enjoy, but we too can learn about the way he thinks and feels in order to understand the why and how of as much as we can, and prevent things from being forced upon him when they're hurting his mind. I will not force him to be like his brother or like his classmates. He is unique. He already tries so hard. I think we can try, too.

---

How old is he now?

[Rev. Rye]

Here's the gist f what I went through as a kid and how it relates to the autism spectrum disorder I have: imagine being thrust into a sporting event where you don't know the rules and aren't even sure you want to play. Now imagine that th other people on the field are more interested in punishing you for not playing by the rules than letting you know what those rules even are. And then they decide they'd have more fun punishing you than actually playing and the referees only have a problem with it when you try and defend yourself. This was pretty much my experience as a kid on the spectrum in a grade school where nobody seemed to care. I came in as a kid just wanting to know what the Hell was going on and I ended it as a messed up kid who was so damaged he was convinced he was a ticking time bomb waiting to happen.

Of course, all this has been tempered by time, an environment that has been, at the very least, less consistently shitty in the past 13 years than before, therapy, and me giving myself time to learn how the world works (to an extent, anyway) .

Does autism get better as a person becomes an adult? Despite all the trouble you had as a kid, it seems you are a very well adjusted adult now. I had no idea you were on the spectrum.

You have to live with it, but it does get better, but the crucial thing is finding help so you can understand the world around you, and personally, in my case, a combination of therapy and a lot of time watching films and reading books (naturally, supplemented by the internet) so I can get a big, general picture of the world around me. A lot of people tend to not figure out I'm on the spectrum until they notice I don't really look them in the eye.

It doesn't really go away, but improvement is certainly possible, and, especially since my therapist actually has a grandson on the spectrum and he seems to be having a better go at grade school when I did, I suspect the next generation of kids on the spectrum might be less likely to go through what I went through.

I discovered one British PIF and, while it doesn't mention autism, it does really resonate with my past. Admittedly, my abuse problems were in school and not really at home (unless well-meaning-but-frustrated-and-out-of-their-element parents count as abusive)

[Catholic_Lady]

Does autism get better as a person becomes an adult? Despite all the trouble you had as a kid, it seems you are a very well adjusted adult now. I had no idea you were on the spectrum.

You have to live with it, but it does get better, but the crucial thing is finding help so you can understand the world around you, and personally, in my case, a combination of therapy and a lot of time watching films and reading books (naturally, supplemented by the internet) so I can get a big, general picture of the world around me. A lot of people tend to not figure out I'm on the spectrum until they notice I don't really look them in the eye.

It doesn't really go away, but improvement is certainly possible, and, especially since my therapist actually has a grandson on the spectrum and he seems to be having a better go at grade school when I did, I suspect the next generation of kids on the spectrum might be less likely to go through what I went through.

Thank you for sharing your experience.

Why is there difficulty with looking people in the eye? Is it shyness?