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Autism And Me


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#1 Angelix

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Posted 16 April 2013 - 04:23 AM

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Hello wonderifical spectacular amazing everyone!! =)

 

I am writing about autism and me, well about how autism spectrum disorder affects me. :)

 

I was mostly writing it to help my care workers and support workers and my friends better understand me, (Its something I never thought of doing before)

 

Since I published the first part to my website though, a lot of parents and doctors have been commenting and emailing me, saying it is helpful to them.

 

And so I thought I would share on here also, in case its helpful to anyone here too :)

 

http://www.mattyange...-and-me-part-1/


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#2 Burkey

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Posted 16 April 2013 - 07:16 AM

I've just read this and thought it was excellent.  Thank you for sharing your insights.



#3 Maryboo

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Posted 16 April 2013 - 08:38 AM

Thank you for sharing that :)



#4 Dizzie1

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Posted 16 April 2013 - 09:36 AM

Lovely Angelix and informative.  Pls post when you have completed part 2. xx



#5 caci

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Posted 16 April 2013 - 11:43 AM

Thank you Angelix.

 

What you have written has given me a glimpse into how life is for you.



#6 Angelix

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Posted 16 April 2013 - 07:32 PM

Thanks you for nice words :)!!



#7 rama

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Posted 17 April 2013 - 05:52 AM

Thank you Angelix for sharing your private thoughts with us, I really appreciate any knowledge to better my understanding of Autism and you write very clearly.Thanks again.  :) Rama x



#8 handle with care...

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Posted 17 April 2013 - 12:13 PM

Wonderful!  Please keep writing.

 

I do have questions though, if it's alright to ask?  I am still trying to figure out how I am different from others (as well as understand myself), but when you have one of your fits (like head banging), do you ever have any conscious thoughts while you're doing it like, "Gee, I know I shouldn't be doing this, but I can't seem to stop!" ?   Is the continuation of the activity a conscious decision to continue doing it or do you have no memory of the time period that you were doing it for?  Do you ever worry while you are doing it what someone would think or feel if they happened upon you while you are doing it?  I have experienced all this and have also had many times that I am rocking back and forth when stressed and I don't even know I am doing it until someone points it out.  Then I feel tense, embarrassed and annoyed, because they saw me, because I obviously didn't notice what I'm doing and because I don't feel I can continue now that they've noticed but I still feel the need to.



#9 Angelix

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Posted 17 April 2013 - 01:06 PM

Wonderful!  Please keep writing.

 

I do have questions though, if it's alright to ask?  I am still trying to figure out how I am different from others (as well as understand myself),

but when you have one of your fits (like head banging), do you ever have any conscious thoughts while you're doing it like, "Gee, I know I shouldn't be doing this, but I can't seem to stop!" ?  

 Is the continuation of the activity a conscious decision to continue doing it or do you have no memory of the time period that you were doing it for? 

Do you ever worry while you are doing it what someone would think or feel if they happened upon you while you are doing it?  I have experienced all this and have also had many times that I am rocking back and forth when stressed and I don't even know I am doing it until someone points it out.  Then I feel tense, embarrassed and annoyed, because they saw me, because I obviously didn't notice what I'm doing and because I don't feel I can continue now that they've noticed but I still feel the need to.


I have had to get a friend to help me :) So I hope I answer right.


1) When I hit my head with my hands, usually my mind is occupied by what is happening at that very moment. I don't decide to do it, its more like a coping thing that happens. I usually can't process thoughts like I shouldn't be doing this at that moment... but usually later I have those thoughts.
 

 

2) Your second question is VERY difficult for me to understand. I am not good with big words :) My friend translated it to me as

 

"When I am still hitting my head, is it an aware decision that I am doing it, do I have a memory of doing it or do I not remember"

I am aware that I am doing it, but at the same time I am not aware. As I said before. It is like a coping thing that just happens and and I can't process thoughts properly at that time, so although I am aware... I am unable to process what I have done. My thoughts are usually directed at what is upsetting me. The after thoughts are usually when I go back through my head to process everything. 

Its not a blank at all, I very much remember most of it.

 

3) Well people like care workers see me doing things like hitting my head often under extreme stress. It scares them. I have had care workers leave because of it. Seeing someone so upset they are hitting themselves and crying can be hard for others. I don't feel embarrassed though... but I feel very bad they had to see that. 

As for rocking and those small things I have never been in a situation where anyone has ever pointed it out to me. But I am also never in a situation where someone around me is not aware that I have an Autism Spectrum Disorder. Most people I think expect me to act differently. I don't always come off as fully aware of things going on around me, as I do with written words, I think that might have something to do with it.

 

I am never alone when I am out either though, and if I am acting strange, whoever I am with usually just lets the person I am talking to know that I have autism... or I do myself. I wear a black medic alert dog tag around my neck which I can show people I am close to that has the words Autism printed on it along with anxiety. 

Also when I go to doctors or psychiactrist... or the dentist. I take my giant pink dog Miss love-a-lot squeaky paw :) For some reason, she makes people more accepting of me acting so strange... but I am not sure why. She does make me feel more brave. She's great help !!

 

I hope my post makes sense I really tried to answer questions but I had trouble to understand them so if it does not make sense please let me know to try again :)


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#10 Angelix

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Posted 17 April 2013 - 09:21 PM

Can someone tell me if my answer was ok or if it made no sense ??? :) Please.



#11 Maryboo

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Posted 17 April 2013 - 09:29 PM

Your answer made perfect sense! :)



#12 Angelix

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Posted 17 April 2013 - 09:36 PM

Thank you :) I have to go grocery shopping with support worker, I didn't want to worry about that while I was out :) !!



#13 Philosophy Mummy

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Posted 17 April 2013 - 10:11 PM

Hi Angelix,

 

Thank you for writing that down and sharing it with everyone.

 

My little boy is somewhere on the spectrum. He is only 4. He can't yet describe in any detail how the world affects him. (I think I'd struggle to describe how it affects me and I know a LOT more words than he does! :wacko:

 

He is super sensitive to sounds, especially loud noises; he reacts oddly and unpredictably to pain when he hurts himself; and he seems to experience hot and cold in unusual ways too.

 

I wouldn't assume that he experiences any of these things in exactly the same way as you but his sensory experiences might be similar to yours.

 

The way you talk about having difficulties recognising some people's voices and the feeling of being hurt inside if someone touches you without warning are things that my little boy would struggle to describe (and I wouldn't necessarily understand). Maybe he doesn't experience voices or touch in that way at all. Maybe he experiences them (and a lot more besides) in ways that I can't even truly imagine.

 

Thank you for reminding me that I don't really know how any of these things feel to him.

 

Love to you X



#14 purps

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Posted 18 April 2013 - 10:09 AM

Hi Angelix, that was Brilliant! :)



#15 handle with care...

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Posted 18 April 2013 - 11:35 AM

Thank you for answering my questions!  Most of it helped a lot.  As I said, I'm still trying to figure myself out and as they say the spectrum affects everyone differently.  I have no official diagnoses, though my husband and I are fairly certain I am on the spectrum (Aspergers) as well as many of my son's therapists querying if I am and if I would consider seeking a diagnoses for myself...

 

I know when I go through things like cutting or rocking, that sometimes I can say to myself while I am doing it, that I'm not supposed to do this and what would dh say if he saw me right now and I can stop myself and redirect myself.  Other times, it's like I'm watching myself from outside my body, screaming stop! but my body keeps moving anyways.  Sometimes with flapping, it's an overwhelming urge, like an itch that you desperately want to scratch but are told not to, and sometimes I can resist and other times the stress of saying no is just not worth it abd I just say, "Screw it, it feels good" and so I flap quickly two or three times and I'm better (though everyone stares at me because no one knows I struggle and it isn't a normal "twitch" to have).  As I said about the smaller stuff, sometimes I'm not aware I'm doing it until it's pointed out to me (like the rocking, biting my nails, chewing my bottom lip, rubbing my hair against my face, etc.).  I spend a good part of my time trying to hide things that aren't perceived as normal though, so maybe that's why I'm so aware of the things I do?  I have low self esteem and it's hard for me, when I wanted to be accepted by those (which encompasses anyone I encounter throughout the day including my own family) who don't perceive (and wouldn't believe if I told them) that I have issues.  I have a great deal of embarrassment about myself and my actions.  My son is too young to care what people think of him and when he has meltdowns he describes it like his vision goes black and he is just fighting (which equates into throwing, screaming, kicking, hitting) anything he comes into contact with while in the dark, because he can't tell what's good and what's not, so he fights it all.  When the fog lifts and he can see what he did when he was in the fog he feels ashamed because he knows it wasn't acceptable but had no idea that when he was doing the fighting, that he was actually destroying things or hurting people.  He doesn't experience any sence of embarrassment though, just shame.

 

It's all so confusing for each of us to put into words and so drastically different.  I thought (part of my own denial) that I couldn't possibly be on the spectrum and that there was something else wrong with me, because I know to hide before engaging in behaviors most of the time, and seem to be self aware of my actions while I'm doing them and can sometimes choose to stop, but I recently found some literature that says that some people on the spectrum do learn to do just that.  And that learning to do that is just another learned coping technique.  Talk about confusing!  Now I don't know where I lie, but I don't see pursuing a diagnoses for myself at this late in life, being in any way beneficial or opening any doors to help for me, so I just quietly try to figure myself out on my own.  If that makes sence. I tend to ramble...

 

Anyway, thank you for answering my questions honestly.  I look forward to reading more from you.





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