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Mudbath
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01 Aug 2013, 11:01 pm

Hi,

I'm 28 years old female, NT (really starting to dislike this term). My son turns three in September and was recently diagnosed with Autism. He's the coolest kid ever. He has given me true purpose in life. I admire his good days and his efforts to learn. I appreciate every single milestone and hope that someday we can have a reciprocal conversation. I have always said that I will accept my son as he is... and now I get to prove it :)

Anyway, what I actually want to talk about is my little sister. Since I have been welcomed into the ASD world, I've started to wonder if she is on the spectrum.

I remember when we were kids she was always spacing out. My parents would joke that during a soccer game she would be chasing butterflies instead of playing the actual game.

She didn't speak (except for "nonsense" and a few words) until she was 4, then everything just came out.

She used to spin in circles a lot

She used to flap her hands when she ran or got excited

She was obsessed with her blanket, smelt it, carried it everywhere

She has always been kind of a loner, although she had friends, they didn't treat her very well and she accepted it

As a 26 year old women, she is a little socially awkward and doesn't like eye contact, although she gets by as just seeming kinda shy and a bit awkward.

She needs alone time to be in her room daily

She gets very focused and anxious about seemingly small tasks. for example, going to get tickets and seats without me because I'm not able get there as early as required.

She thinks certain things are so weird or awkward... a naked baby is awkward and kids eating cheese disgusts her to no end. Also, kids playing in a group weirds her out too.

She is a very kind person but sometimes seems to not put in effort in socially expected ways. Like she doesn't even think about offering things to people in situations where it is expected.

I have always considered her quirky and my husband has always thought something was really different about her. I love her strange sense of humour, I'm the same way, we are such weirdos together (me more so than her). One more question, if you think she might be on on the spectrum, should I suggest it to her? I'm not a fan of labels, i think it would hurt her self-esteem but I also think it could help her understand herself a little better. She seems lost in life right now.

Thanks!



benh72
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01 Aug 2013, 11:26 pm

Looking at what you posted there was something I can relate to that struck me; this was obviously from your perspective:

"She has always been kind of a loner, although she had friends, they didn't treat her very well and she accepted it"

I think that's the way others would have seen me with my "friends". The reality is I didn't and she probably also doesn't "accept it", more that those of us on the spectrum learn to accept that friends routinely ridicule each other. We don't like it, we don't want it, but we learn pretty quickly that if you don't put up with it, you won't have any friends, and even a bad friend is sometimes better than no friends.

I think you should certainly bring up your suspicions with your sister that she may be on the spectrum, but you'll have to do it carefully and sensitively; perhaps even find a way for her to be encouraged to discover for herself.
Certainly one thing you could do is tell her about WP, and how it's helped you with your son, and perhaps she may like to have a look at WP as well, so she can understand a bit more about what life is like for her nephew.
If she discovers along the way that she may be an aspie, that may be a "happy coincidence".

One thing none of us like is to be labelled by someone else when we are not ready to accept it, so tread carefully.
Someone who was much more eccentric than me identified me as an Aspie 10 years ago, and I was far from ready to accept it then.
It genuinely took me a further 8 years to get to the point of self diagnosis, and another couple of years to actively seek a formal diagnosis.
It's harder for us when we are adults, as it's harder to diagnose, and harder to accept, but in the end it's worth it to have an explanation for why we are different.
I'm not fond of the NT, label either, (nor the term autism), but in this label obsessed society we have to accept that we all have some label applied to us, or that we self describe with; better to have an accurate and true label than to go through life without one and feel ostracised, excluded, and confused. Or worse have a wrong label applied (I was wrongly diagnosed with a psychotic illness when I was 17), and spend decades coming to grips with it to find it's wrong.



Mudbath
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02 Aug 2013, 12:34 am

Thanks benh72.

Yes, you're right, everything I wrote is from my perspective. I don't mean to put her down with the term "loner." It's something my mom has always said and it seems hurtful, although it is a true description of her youth. I completely agree with you, sometimes bad friends are better than no friends at all, and who doesn't go through that balancing act in high school.

Thank you for your suggestion. I agree, just coming out with it is probably the worst approach. I suggested that she should consider ASD when she starts having kids, due to the genetic component, and she thought I was crazy. This made me think she really has never though of herself in this light.

The word autism is usually associated with horrible things... I dislike the connotation of this word more than anything else I have experienced during this journey with my son.



nebrets
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02 Aug 2013, 1:02 am

Congrats, you just described me (except for the language delay).

I am not a psych, but it sounds like some ASD, you might read over the DSM requirements and see if they apply to her. Some of the requirements are not filled 24/7 but may show up when stressed or excited (such as my speech/language difficulties, and more repetitive movements), or were more obvious as a kid.


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Mudbath
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02 Aug 2013, 4:05 pm

Thank you nebrets,

This website is great. It really opens my eyes to a lot of things. I feel very ignorant and I appreciate the opportunity to understand ASD by reading about it from people who actually experience it, rather than from a NT POV. I hate the way people look at my son like he's a brat having a tantrum, I want to scream in their face about the challenges he is overcoming every time he decreases the intensity and duration of his tantrums. I want to throw him a party when he regains his composure after a few minutes of losing it, because he's learning to control his emotions in the face of extreme sensory overload, but to others he is a nuisance. This is the website parents should be directed to when their kids are Dx with ASD.

Thanks again



nebrets
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06 Aug 2013, 10:49 am

no problem. It is hard for people unfamiliar with what ASDs are to understand what is happening because we look "normal". I did not do much tantrum throwing when I was little, but I did, and still do freeze up when I am overwhelmed (say at restaurants) and become non-responsive. My inability to communicate at that time was not stubbornness, I could not take in input correctly any more, I do not even realize people are talking to me at that time.

I hope you find support here from others who can help you.


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