I wish I had the magic words to help you out of this, but I think you just have to process these things. Some of AS involves a bit of a grieving process. Many things are more difficult, yet, there are gifts with it as well.

Just remember, you are still you. You are still the same wonderful caring person you always were. In fact, the fact that it bothers you so much proves that you are a caring, loving person. Otherwise you WOULDN’T care. A lot of aspies seem to have these cycles, myself included. I think that may be why many of us get mis-diagnosed as being bi-polar. Just because you can’t do everything, it doesn’t mean that you can’t do something. You are still writing, that alone is HUGE. I could never keep up with writing a regular blog. These replies I write in yours are the most writing I do at all, and these I can only do very sporadically.

Yes I can go out and work in a “real” job, but I know that I couldn’t do that if I didn’t have Susanne here at home to make it worthwhile. Sometimes, just being there is enough. I know you’ve made a big difference in both of our lives.

Why?

Well, I finally got it through my thick skull that fudge and I just don’t get along. I would eat some, and my body would let me know, in a very short time, that I had done a VERY BAD THING. And then it kept reminding me of my transgression over the course of the next few days.

Does this sound familiar to anyone?

I’ve been watching and experiencing the effects of Rachel’s forays into the NT world, and I frequently simply say, “it’s fudge.” We’ve developed enough of an understanding that this shorthand sometimes works. But not always.

But here’s my dilemma: I’m not convinced, deep down, that I wouldn’t like to be able to eat fudge again. After all, it seems to work for so many other people, so why not me? Maybe, if I prepare myself in advance, and know that my digestive system will be in an uproar for days after, it would be OK. I’ll pay the price. I’ve told myself that this is crap — but, hey, I’m human too and want to be like the next guy.

I know that there’s a world of difference between the effects of fudge on me and the effects of an NT foray on Rachel. But I think there’s alot that both of us can learn about accepting, and hopefully celebrating, what others might call our “limitations.”

Maybe I could have just one small piece — a very small piece? I promise not to make a big deal of it!

But Rachel, without you and people like you describing what your life is like, then autistic people born after you are going to continue to suffer without an appropriate education and therapeutic services. I know I am one of a fortunate few who was able to rearrange my life to stay home with my kids and school them myself because I could just tell they weren’t going to fit in to the cookie cutter education available to them. Now that I have information, thanks to blogs like yours, I am armed to go into battle with my school district and know that my children will have an education that fits them, and not just their neuro typical peers. They have a shot at making it through a college program and living independent lives out in the world, because they can get services NOW.

NOBODY is in a hurry to admit there is an epidemic, no one is in a hurry to develop appropriate educational plan. No one is in a hurry to develop work strategies for kids like mine. It’s only the parents who are fighting for their kids, we are in direct conflict with the budget contraints of our departments of education of both our state and country. I just had a conversation with a middle school teacher who mentioned she had an aspie in one of her classes last year, and that the plan made for him was both unrealistic and uneffective, and yet there is a giant trend to push autistic kids into mainstream programs which are much cheaper. My kids are high functioning, and I already know that mainstream isn’t going to work for them. And the only way they get into the high quality autism specific programs is for them to fail miserably in the mainstream over a long period of time. I simply won’t subject them to that, and I know I am in the minority of people who can afford to compensate at home in the meantime.

We all need you, desperately, to share your story and your wisdom. I don’t want to put any pressure on you, but you are filling the gap between the people who don’t know how to diagnose, and the people who simply don’t want to for political/economic reasons. Please continue to talk about your symptoms, and give us the details of your life. I know it’s not the purpose you chose for yourself, and it’s hard to see something so intangible as a fulfilled goal, but you are already helping other autistic people in a very big way.

I just reunited on facebook with a friend from high school. My profile is full of autism references in an attempt to raise awareness as a natural part of my family life. This friend was in dyer need of information for her child who she had tried very hard to advocate for, but being in a small town and in an unenlightened time, was never able to effectively address any of her child’s needs with community support. I sent her a private email full of descriptions of my child’s behavior, and she wrote back saying what an incredible relief it was to know she wasn’t crazy in believing her daughter had asperger’s. I told her it’s so hard to get a diagnosis for a boy, forget about a girl – and then I gave her the link to your blog. This was before I read your last two entries. She needs to read what you wrote, I needed it too. We need to know what our children feel like on the inside to motivate us to advocate for them more effectively. It’s easy to lose momentum when it feels like the wind is always pushing against you. You are the shield against that wind.

What Gavin wrote above “It’s nice to know that there is a large body of work out there about us and what we are like. Most of this work has been done by people who aren’t on the spectrum – and much of it has already been shown to be shallow and inaccurate.”

SO TRUE! And that is why we need you, that is why what you’re doing is so meaningful and so very very important, so very very critical.

Do you WANT to do that stuff? If you want to do it and you do it, do you think maybe it’s worth the recovery period sometimes to go ahead and do it?

I helped work at a convention last weekend that was so wild and full of people and off my normal routine (I even took two days off of work!!!) that it’s taken me up to today to even feel partyway HUMAN again. And that may not always be something I’ll be able to do, but this time it was pretty much worth it, I have to say.

Don’t know if that’s something that’s perceivable.

And like Gavin said, we are TOTALLY here. I keep talking about you to my OL friends. I’m like “OMG and Rachel said this on my blog, and she blogged about this and it was awesome, and yadda yadda yadda…” LOL.

With that said, sometimes it’s worth the recovery and you’ll do it anyway.

Thought of you on Wednesday. I went to a brand new pottery class, had to go to the library and ask for assistance on printing out some documents, and had knitting group that night. I thought I did fine, but yesterday everyone in the family mentioned (more than once) how bitchy I was and “Are you okay?” I was feeling so proud Wednesday night that I’d done all that, and well, I really hadn’t done too well with it. Next Thursday I’ll remember to isolate myself better…

Oh, Rachel, I’m so sorry you’re at this crossroads. I do totally relate to the bottom-falling-out feeling. (I am in the holding pattern phase right now, I think….argh argh if bottom-falling-out gets worse than it already was.) The feeling that you just *can’t*. “Want” doesn’t even factor in. It’s a question of inability, and like you, I am just speechless, mouth hanging open, at this turn of events, because as you said, a year ago it was all going fine, out to the movies, over to work, the whole NT routine….so what the f*ck happened? If we could do it then, why can’t we now?

And the future….the future is off the original map. Finding out you’re autistic is like finding out you’re adopted. There goes everything you thought you knew about your life, your past, who you are. Sure, nothing concrete has changed, but still *everything* has changed. You can’t view yourself the way you did before, however much you might sometimes want to.

Of course, the analogy breaks down at the meltdown border. I don’t think people who are adopted have regular yet inexplicable meltdowns. At least not before they find out they’re adopted.

I am sure this is a necessary phase in accepting one’s autism after a lifetime believing you’re NT, but I hope it isn’t one you’ll have to spend much time in.

I am really glad we found each other. I hope our being on this journey at the same time in roughly the same stage means we can help each other get through it better than we otherwise would.

On one hand I want to give you a pat on the back and say that everything will be ok. On the other hand I know that it would be very patronizing and sound very shallow to how you are feeling. I don’t know if it will be any comfort to you or not, but this is yet another post of yours that I could have written. Word for word.

I have been a homemaker for 10 years and have ridden the lonely aspie rollercoaster up and down so much that I’m surprised that thinking about it doesn’t make me sick. It’s one reason why I thought I was bipolar because about every six months I’d go through a full cycle that I now realize is going through a few ‘great’ months of feeling almost NT and doing my best to alleviate the short term daily overload but completely discounting that I also have the accumulative long term overload as well. When the long term overload finally gets filled up it feels as if my world is just disintegrating around me, even thinking of being in the vicinity of anyone other than my husband (sometimes even him) makes my skin feel like it’s getting burned or electrocuted and I nearly become ill. I get so desperately lonely because I’m afraid that I will disintegrate as well, crying my eyes out when Craig has to go to work because I’m so afraid that somehow I’ll disappear by the time he gets home.

For me at times like this all I know to do is cry. I think my family knows by now that this sort of crying is different, that there really isn’t anything that they can do about it but to usually leave me alone. I’m not really sure how to simply phrase it, its not just a tear or two. I make my way to my safest spot, normally in bed snuggling what ever stuffed animals I feel are most appropriate or just my pillow with my weighted blanket covering me (one I crocheted out of heavy cotton yarn used for dishcloths) and the lights turned off or dimmed.

I make sure I feel as safe as I possibly can before letting the tears slowly fall. Soon it will become a torrent, crying over lost dreams and the life I could have had, crying for the person I know I can never be, sometimes just crying because I’m crying. For me I have just learned that it is a storm I just need to wade through because the alternative of ignoring it is Much Worse. I cry until the tears subside or I eventually fall asleep sometimes two or more hours later. Slowly a few days later the world looks a bit brighter with a bloom of hope popping up like a crocus in the snow.

Even though my husband and I don’t say much, I know for me that I think about you almost every day. You have been a beacon to me, lighting an indecipherable path of understanding into myself that I never expected to find. You have forever blessed me from simply being your beautiful self. I hope the clouds pass you by and allow you to smile again soon, because after every night, the dawn always comes.

Comforting Hugs & Much Love,

Susanne

P.S. I had originally come visiting to catch up on your posts and let you know about my blog I have started to help myself and my family understand how the world is for me. When you are feeling up to it you can find it at: http://ineverknewmyname.blogspot.com/