Hello, this is my introduction
I don't even know where to start. I was diagnosed with Asperger Syndrome in 2003. All my life I knew I was different and I kept trying to find out what that was. My first experience with autism was a non verbal developmentally disabled girl in my son's special ed class. (My son is 24 and has Down Syndrome and is also on the autism spectrum.) Then when I was in a women's therapy group, the counselor said that I needed to stop moving my head and eyes the way that I was moving them because it made me look autistic. That was in 1996 or 1997. I think around that same time, I had purchased Donna Williams' book Nobody Nowhere because I felt drawn to the title. Somehow I ended up on some online forums with other people on the spectrum and they encouraged me to get a diagnosis. The process of getting a diagnosis is a whole other long story that I won't get into now.
Initially getting a diagnosis made me feel like saying hey I make sense now. I was happy and felt good about it. I thought it was pretty cool. I thought I was something special.
Lots of things have happened and now I have some pretty severe self-esteem issues, especially around being autistic. I have so much difficulty verbalizing what I am experiencing and have experienced and I am feeling frustrated with my inablity to find the words to put it all down here so people will understand.
2009 was a very very very hard year for me. In 2008 and 2009 a lot of important people in my life died. I had a very abusive boyfriend for two years who was still my close friend for a year after we broke up and that boyfriend abused me in such a way that I have deteriorated to the point of wanting to give up and I have not been able to get back to the happy Aspie I used to be. I have been too scared to put myself out there anymore.
Every time I almost totally give up hope, some tiny little thing would happen to keep me going. First a new member of our support group friended me on facebook. Through her I found four people on the autism spectrum I really looked up to and see as successful in their lives and then I found a fifth one but I don't remember how I found her. Through one of the women though, I found this AWN on facebook and joined it and then Sharon, I think it was, invited me to these forums. So here I am.
Finding other autistic adults and finding AWN have given me a little hope. But a lot of times, I really don't like having Asperger Syndrome. I am having a hard time with having it, mostly due to the feeling vulnerable and being taken advantage of and not really understanding fully. So I hide in my apartment a lot and play on my computer. But that is not a good thing for me to do. It's very lonely and depressing.
I am in the middle of listening to Liane Holliday Willey's talk on having Aspergers and being vulnerable because I wasn't able to participate in it real time, but I have it on pause right now because it was hard to listen to that and try to type this at the same time.
I don't like being vulnerable and easily taken advantage of. I have a high IQ, I'm really smart, I should be able to figure it out, right? Nope. I can't. I have Asperger Syndrome. Whee. But I can't not have it because I do have it so I have to figure out how to deal with it. Ugh.
What's really hard is the invisible disability bit. No one gets it. No one believes I am autistic, no one believes I struggle as much as I do. I am so exhausted. Part of the exhaustion is trying to make myself be not autistic, and part of it is other people also expecting me to not be autistic. Be "normal" or nuerotypical.
Also, I am extremely conscientious so I want to do everything the right way, meaning like the neurotypicals do. But it's so hard!
And I'm an extrovert, so people both energize me and drain me.
I should stop for now.
Lisa, welcome.
It is rough dealing with having a High IQ and being on spectrum, especially when your friends and family not getting that OF COURSE there's a difference- the type of intelligence used for social awareness is VERY different from the intelligence measured in "IQ" type tests. And if they keep telling you that you are wrong or stupid or lazy (I had one person who liked to say I was an emotional retard) a part of your mind starts to believe it. It is hard.
Savannah Nicole Logsdon-Breakstone Director of Advocacy 
Hi, Lisa
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Hello, Lisa! I enjoyed your post and am glad you're here. I also liked Liane's book and agree with you about the invisible disability part. It's weird how angry people can get if they can't see obvious signs of difference. I notice this with my son because he can talk so well, what horrible things people say about how lazy, manipulative, deceptive, impulsive, etc. he is. One principal even called him a little a-hole, as if she thought nothing of insulting him in front of me. I had teachers earnestly advising me to try not to be so odd. Can you imagine? As if that were a choice.
Welcome to the forum :) Sorry to hear about how rough the past year has been. Hopefully 2010 will be better for you, and you can find some support amongst the good people here.
Hi Lisa, sorry to hear you've been having a tough time. I hope things pick up for you soon. I found reading new age and spiritual literature helped me. Even when I'm alone I know I'm not totally alone because my guides are always watching over me and sending me their wisdom. I believe I was born autistic for a reason.
What did the counsellor mean about the way you moved your eyes? How were you moving them? I know I have poor eye contact. Either I find it hard to look at people or just stare. Is this the same thing? Otherwise it sounds like another strange thing I've been doing without realising
Some replies: Savannah, I would like to use your line 'the type of intelligence used for social awareness is VERY different from the intelligence measured in "IQ" type tests.' as a quote. I have a hard time finding words to describe my experiences and I love it when someone else says it for me and then I can take their words and use to describe my experiences. The more isolated I get, the less I am able to talk, so I need to be around people talking so I can remember how to talk.
One friend told me once that I was "socially inept." That was back in the early 1980's. My very abusive ex boyfriend tried to convince me that I couldn't possibly understand love and relationships since I was autistic. That way he could totally blame me for the failure of our relationship. I'm just the dumb autistic. His words had a very damaging affect on me and so I am having trouble valuing myself as an autistic person.
I did have one experience several years ago of sitting with a group of Mensans (people who are members of the high IQ society) and I told them I had Asperger Syndrome. They treated me like I was a celebrity because of that. That felt really good.
Miss B: I do not know how I was moving my eyes or head. I also forgot to mention that everything that that counselor ever criticized me for in that group, I later found out were just Asperger characteristics (lack of eye contact, inability to read other group members, among other things). Also, a lot of the sensory issues I was having, she attributed to my having been abused (as a kid) in ways I do not remember.
Greetings Lisa & welcome to AWN. It appears this past year has been a rough one ~hang in there.
You have definitely come to the right place for community support. Please let us know if we can assist you with getting more acquainted with the AWN Forum.
Thank you. I'm still trying to find my way around in here. There are so many interesting topics that I have been trying to read.
Hi Lisa,
I saw your post and though it was from back in Feb of this yr. I'm hoping you are still using this forum. I'm new to AWN. I have a 15 yr old girl with autism and Down's syndrome and I noticed that you also have a child with both. I also have a husband, that though undiagnosed, would fit well into the Asperger catagory. And sometimes I feel like I'm not far from sliding off that slippery sloap.
My daughter is non-verbal (other than still being able to say "no") and is academically very low fuctioning. We like to say that she is smart in her own way though, because she seems to be able to figure out what to do to get what she wants. Though she typically requires a lot of assistance to get dressed, we've recently seen her dress herself fairly neatly, shoes and all when she wants to go somewhere! But then the challenge is keeping her dressed! She recently stripped completely in the high school hallway during summer school, much to the dismay of the para who was supposed to be a one on one with her! And once she gets somewhere she wants to be, it sometimes takes a small army to get her to leave! My greatest fear is getting somewhere with her and getting stuck. We rarely go anywhere alone together. If I take her in the car, I don't know that when we arrive at our destination that she will be willing to exit the car. And the same is true upon arriving back home. These are definately autism characteristics. We used to have friends with childen with DS when she was little, but by the time my daughter was 3 or 4 she seemed very different from the other kids with DS. There are support groups for DS, and support groups for Autism; I don't know that we would fit in either. Any suggestions anyone???
Hi Lisa. You said...
I don't like being vulnerable and easily taken advantage of. I have a high IQ, I'm really smart, I should be able to figure it out, right? Nope. I can't. I have Asperger Syndrome. Whee. But I can't not have it because I do have it so I have to figure out how to deal with it. Ugh.
What's really hard is the invisible disability bit. No one gets it. No one believes I am autistic, no one believes I struggle as much as I do. I am so exhausted. Part of the exhaustion is trying to make myself be not autistic, and part of it is other people also expecting me to not be autistic. Be "normal" or nuerotypical.
Also, I am extremely conscientious so I want to do everything the right way, meaning like the neurotypicals do. But it's so hard!
And I'm an extrovert, so people both energize me and drain me.
Thank you for verbalising this so well. I so relate to all that you say in these paragraphs. I think it is harder to be an extrovert AS person, as you both need to be around people, and find them hard work. Simultaneously need and want to feel connected to others, and unable to establish anything in common with them and consequently feeling more isolated and different and just plain weird, than ever before.
I come home from work worn out by the effort of fitting in with others. Although I am lucky now that I work with two others who, like me, just want to get on with the work and aren't fussed about chit chat and small talk. Blissful. Others who come in find the atmosphere in our office intimidating or cold, but it works for us!
All the best, Jackie
Hi Lisa. You said...
I don't like being vulnerable and easily taken advantage of. I have a high IQ, I'm really smart, I should be able to figure it out, right? Nope. I can't. I have Asperger Syndrome. Whee. But I can't not have it because I do have it so I have to figure out how to deal with it. Ugh.
What's really hard is the invisible disability bit. No one gets it. No one believes I am autistic, no one believes I struggle as much as I do. I am so exhausted. Part of the exhaustion is trying to make myself be not autistic, and part of it is other people also expecting me to not be autistic. Be "normal" or nuerotypical.
Also, I am extremely conscientious so I want to do everything the right way, meaning like the neurotypicals do. But it's so hard!
And I'm an extrovert, so people both energize me and drain me.
Thank you for verbalising this so well. I so relate to all that you say in these paragraphs. I think it is harder to be an extrovert AS person, as you both need to be around people, and find them hard work. Simultaneously need and want to feel connected to others, and unable to establish anything in common with them and consequently feeling more isolated and different and just plain weird, than ever before.
I come home from work worn out by the effort of fitting in with others. Although I am lucky now that I work with two others who, like me, just want to get on with the work and aren't fussed about chit chat and small talk. Blissful. Others who come in find the atmosphere in our office intimidating or cold, but it works for us!
All the best, Jackie
I'm a bit late to the original conversation, but the part about "invisible disability" reminded me of a so-called-friend's rather snarky comment to me recently. She said something to the effect of "what's the big deal, a million-jillion people have one". I was so flabbergasted, I didn't even know how to respond. 
I hope things are looking up for you, Lisa.
Hi Lisa! I'm a little late to the conversation but also wanted to say hello and welcome.
I can relate to the self-esteem issues...I grew up in a dysfunctional family where I was put down all the time....retarded, weirdo, the whole bit. I used to get asked "why can't you be normal" a LOT. I got so sick of hearing it, because I heard it so frequently between ages twelve to eighteen. I'm now in therapy trying to deal with PTSD, new issues with finding out I have Asperger's, and to undo the damage that my aunt and other members of my family did.
I've been trying to accept myself for years. I liken it to an up and down rollercoaster. I am truly thankful that I have my fiance (who oddly enough was the first one to ever suggest that I had a spectrum disorder) and my counselor (who is an astute and excellent professional) to help me on the road to self-acceptance. After I figured out that I did have Asperger's, that pushed me more towards self-acceptance. I figured I could do this one of two ways: 1) keep trying to be normal and drive myself crazy, or 2) accept myself as what I am and encourage others to do the same.
I've come to not only accept but be proud of the fact that I have Asperger's. I am a poet, and I find that the visual thinking aspect of it helps a great deal in my writing. I translate what I see in my mind -- pictures -- into words: metaphor, simile, imagery. Yes, I do have my difficulties -- sensory issues, frustration, anger at my own social and other foibles -- but I don't think I could imagine myself any other way.
I can certainly understand your self-esteem issues as well as some of the other things you mentioned. There are times I feel totally dumb in the social arena, and I'm tempted to hole up in the house. I've also experienced the hatred of feeling vulnerable. Since I experienced physical, emotional, and sexual abuse, I was a walking skin of vulnerable, feeling like I was see-through -- and sometimes I still do. I've experienced fear of the world around me, fear of my coworkers, of my friends and acquantainces, and of my environment. It has taken a long time to finally come to grips with that vulnerability and to quit trying to deny it.
You've found a good community here, with I'm sure many other women who have been through similar struggles. Again, welcome, and I sincerely hope the best for you in your journey.
Saludos,
Nicole
Hi all, I hadn't realized I had been gone from these forums for a year. Sorry about that. I am behind in reading, hadn't seen some of these later replies and would like to read them and get back to them.
But first I will say that while I am pretty much struggling with the same things I originally posted about, things aren't as bad as they were then. So that was encouraging for me to see.
My son's bus will arrive any minute now and we have track practice tonight, so not sure how much I will be able to write tonight, but just wanted to at least let you all know I am back and to apologize for neglecting to read and reply.
I'll be back in a bit. :)
Welcome back Lisa :)
Hi, Lisa and welcome back to AWN Forum!! 
Hi, I wanted to reply to this to say that I just now added a picture of myself. It was taken yesterday on January 14, 2012 which was my 50th birthday. It feels weird to be 50. But mostly I wanted to say all my postings will now have my picture on them.
A BIG HAPPY Birthday to you, Lisa!! I will be 48 this year in July.
It is a great picture, and you are looking a fabulous 50.
Oh darn. In that first paragraph, I was on some online email mailing lists, not forums.