How does it feel to be autistic?

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AbsMum
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12 Jan 2011, 3:45 pm

Can anyone who has autism answer this for me? Our daughter is 3.5 years old and does not have much conversational speech and we long to understand how she might see the world and how she might feel. If anyone who is now older can remember what it was like to be a toddler with autism any insight would be great.


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hesting
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12 Jan 2011, 3:55 pm

Megz
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12 Jan 2011, 4:05 pm

Feels normal to me. I mean I've never known anything else. If no one had ever explained how people's brains usually work, or that the majority of people don't have to consciously think about social rules, or that loud noises or bright lights don't cause pain for most people, I probably would've thought everyone else in the world was just doing a better job of coping than me. I don't really know how to explain the differences without a frame of reference for how other people think.



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12 Jan 2011, 4:21 pm

Megz wrote:
Feels normal to me. I mean I've never known anything else.

If want to know what water is like... do not ask the fish.

Although, for me it feels like the entire world is either neglecting or abusing you, mostly due to misinterpretations of other people's behaviour, but sometimes due to the fact that people tease people who are different.



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12 Jan 2011, 4:29 pm

It feels like a dream..... or like the whole world is speaking a secret language that you do not know.... but it doesn't matter because no one believes you when you say something hurts, or lights/sounds/touch bother you. And sometimes its scary.


But every one is different.



lelia
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12 Jan 2011, 4:37 pm

It feels like the adults are often reliable, but all your peers are not. You love learning, but again, your peers don't, and you don't know why. You get picked on, but you don't know why. And you are right, and they, everybody from adult to peer, are usually wrong, and why can't people do what they are supposed to do?



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12 Jan 2011, 7:25 pm

Ditto, what everyone else has said.

When I was young I didn't realize how different I was compared to others. As I grew older, though, I started to realize how disconnected I was from everyone else. It really affected me emotionally, not knowing how to deal with people and new situations. I've been trying to figure out how to cope for the last 13 years and it's still challenging.

They best gifts that you could give your daughter are to love, support, and be patient with her. Let her be herself, but give her the tools to interact and communicate (doesn't have to be verbal) with others, so she doesn't feel so disconnected. Maybe she's better at expressing herself visually, e.g., drawing. My mom was the most supportive and loving person, but I wish I had developed better ways of communicating my thoughts and wishes to others. It has held me back from pursuing my interests in life.



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13 Jan 2011, 10:31 am

I still am wondering what it feels to be NT.

For me when I am around people I do not know I feel out of place like I do not belong. I have been in situations where I was nervous so I started being funny coming up with witty or funny replys to questions given to me to make myself feel at ease. Even though I had the people laughing with me I still felt like an outsider or I should not be there. No matter what I still felt like I was being laughed at. My brother who was with me when I did all that told me when I left a lot of the people said they were sorry I left early. Even with my brother swearing to me he was not lying I still felt like I was not wanted.

Other experiences I had have been when I was right about something and knew I was right without a doubt my co-workers still refused to accept what I said as being right. They would do anything to prove me wrong even if I could point out in a book, video, or to demonstrate it in front of them. So I know I was so disliked they would rather allow an expensive machine tear itself apart than allow me to look like I know what I am talking about. The bosses were amazed how I told them what was wrong and how to fix it but they still refused to do it in order to spite me. :roll: It cost the bosses over $5,000.00 to replace the broken parts and to have the machine fixed.


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13 Jan 2011, 11:27 am

I remember being three. Sensations were very important to me. I was very sensory seeking and would spend hours spinning and playing with sand or water. My 5 year old Autie is very much the same. I was diagnosed with Asperger's a few years ago...I am now 43.
I think its great that you want to understand your child. I think the best way to understand is to get down on her level and study the things she studies, feel the things she feels, simply put...play with her, this way you are joining her. Make sure to keep "sensory items" around. Things with different textures, ext. My kids love shaving cream and I always say this is the best way to get your floors clean and engage your kids at the same time. This helped my daughter get over her fear of getting messy and it is great sensory fun. If you dont have any bare floors you can also put it on a window or a cookie sheet. Also sand is great (you can also put this on a cookie sheet) and water. My Mom swore I was a fish and my kids are the same way. They love the bath and swimming...swimming lessons are awesome. Also if possible try to put a swing in your house. They have great ones at IKEA for only 20$...its like a hammock swing. We just put pillows inside it. Also a indoor trampoline is great. If you have an outdoor one that is good too! The best thing you can do for your daughter right now is engage and regulate her sensory system. Once you start "playing" with your daughter you will find that you are communicating with her. She is actually "communicating" all the time because she is constantly in touch with her environment and her environment is constantly communicating with her. This is why providing for her sensory needs are so important. If she has an occupational therapist they can help you find what type of sensory needs she has or you can work by trial and error to find what she needs.
I know I didnt really answer your exact question but I do hope that I gave you some insight anyway.



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13 Jan 2011, 11:53 am

Mhh, at 3 years old i was fine :) i was safely at home, and a happy child. My mother struggled more than i did, since my honesty had other members of her family tell her she should do this and that and stop letting me rule the house and basically be a better mother, she tried at times, but always found herself entering long conversations with me about this or that new rule that i didn't feel was justified, in the end she just told everyone i was too gifted to respond to simple authority. ( I was undiagnosed )
From the moment i started school i became more withdrawn, but what i enjoyed doing was sitting at the dinner table with my thumb in my mouth or my head on my arms and listen to the grown ups talk, recording every conversation in my brain for later use.Nobody wanted me to participate yet, so i felt invisible and safe, like a stealthed spy or something, just learning from what i heard. I read a lot, too. I might have appeared very silent and possibly strange, since a friend of my mother who was a pedopsychiatrist suggested i might be autistic, and to have me checked. my mother refused to do so, though, and it might be the reason i have been to college, since there was no help in the eighties, just trauma-inducing therapies...
I was happy reading and listening and learning. I loved my parents. I hated school. I felt normal, i thought other people were loud, and wondered how other kids could cope without their fingers in their ears, i had friends who spoke a very simplistic language that i tried to imitate when i finally understood they DID NOT want to learn to speak properly, i learnt to say "yeah" instead of "yes", and that's when my anxiety around other people started. When i started trying to pass as neurotypical. I might have been 7, and the 8 following years were the worst of my life, even counting the adult years where i have been : unemployed, a single mother, screwed over by members of my family, let down by countless friends...late childhood and early teenage years are the worse.
But early childhood was a bubble of safety :)



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13 Jan 2011, 1:41 pm

I don't think I could have done the shaving cream on the floor. I was always running to Mother to clean my hands. And once I could reach the sink and wash my hands, I did, and still do, wash whenever I touch anything the least bit sticky. I wash my hands at least ten times while preparing dinner. I can't stand sticky. It is why I won't grow petunias even as I grow dozens of other flowers.
My poor mother. Once I pulled off the heads of all her zinnias because I thought they were so ugly. I still think they are ugly and have no idea why. I love hundreds of flowers, many that look like zinnias, but somehow, even at a distance, I can tell who is zinnia and who isn't, and they offend me.
Those stories are to tell you that your daughter may have strong sensitivities in some areas that you simply may not be able to discern. You will just have to believe her when she says some thing is some quality.
And of course she may be lacking in things that seem so simple to you that you may not see the lack because she can't tell you. I thought all men looked absolutely alike. So did most of the girls. I am better at recognizing people now, but still have difficulties. I could not and still can't recognize cars. Finding my car in the parking lot is hard.
It was not until the fifth grade that the school found out I was so nearsighted that I could not see faces on TV or writing on the blackboard. The school just assumed I was ret*d even though I could read before I went to kindergarten and was reading adult novel by the time I was in fifth grade. It never occurred to me to tell the teachers that. I don't know what they thought I was doing with all those books. I don't know where they thought I got all those interesting facts I was trying to tell them and the kids, but no one was interested in.



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13 Jan 2011, 1:46 pm

I explain the feeling I had before I was capable of complete conversation like this: it's like that feeling that you have a word on the tip of your tongue but you just can't say it but all the time. The child is frustrated. I would pull on my mom's hand and point at what I wanted and if she didn't get it, I would scream because I was so frustrated with my inability to communicate. I dunno if this rings true with anyone else but that's just my experience. >.<



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13 Jan 2011, 3:34 pm

Erisad wrote:
I explain the feeling I had before I was capable of complete conversation like this: it's like that feeling that you have a word on the tip of your tongue but you just can't say it but all the time. The child is frustrated. I would pull on my mom's hand and point at what I wanted and if she didn't get it, I would scream because I was so frustrated with my inability to communicate. I dunno if this rings true with anyone else but that's just my experience. >.<


That's a good way of explaining it. I think we often know we should be doing or saying something but we don't know what it is :?



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13 Jan 2011, 5:23 pm

"How does it feel to be autistic?"

It feels okay.


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13 Jan 2011, 6:26 pm

Tempus wrote:
Erisad wrote:
I explain the feeling I had before I was capable of complete conversation like this: it's like that feeling that you have a word on the tip of your tongue but you just can't say it but all the time. The child is frustrated. I would pull on my mom's hand and point at what I wanted and if she didn't get it, I would scream because I was so frustrated with my inability to communicate. I dunno if this rings true with anyone else but that's just my experience. >.<


That's a good way of explaining it. I think we often know we should be doing or saying something but we don't know what it is :?


Yeah. I know what I want but expressing it is difficult at times. I've gotten better though. :)



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13 Jan 2011, 6:47 pm

lelia wrote:
My poor mother. Once I pulled off the heads of all her zinnias because I thought they were so ugly. I still think they are ugly and have no idea why. I love hundreds of flowers, many that look like zinnias, but somehow, even at a distance, I can tell who is zinnia and who isn't, and they offend me.


LOL. Have always been offended by zinnias, although I'm slowly starting to come around a bit, esp. now that the trend is dwarf plants with a more open flower. They're so STIFF.