13 Responses to “At a Low Point”

1. 

   Gavin Bollard July 9th, 2009 at 6:49 pm

   Rachel,
   There’s a point that you reach when you stop defining the label and you start letting the label define you. I think you’re at that point.

   When I was a child, I was full of dreams. They ranged from wielding lightsabres to flying off into space, being king of the world etc… They were unrealistic but it didn’t matter. That’s the point with dreams. They don’t need to be attainable.

   Then, there were goals. These are much more realistic and hopefully achievable – but not without a lot of hard work. These days I cheat a lot and set goals that I can easily achieve. In a way, this boosts my self esteem but then they become to-do lists rather than goals.

   My point is that anything realistic that you can’t achieve in an instant is a goal. Anything less realistic is a dream. Both are important for our development as people and you must not throw them out simply because you haven’t achieved them yet.

   We’re on the spectrum. Great. 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.

   The label is simply an easy way for us to describe our most common symptoms in one word. It should never be accepted as a statement of our limitations. You can “outgrow” them. You can outwit those pesky feelings and it’s not a battle that you should give up on.

   Leave going to the movies as a goal. Maybe you can go on a quiet day. Maybe you can go to one of those “gold class” seats where there are only a few attendees. You WILL find a way.

   Your post is sad and you talk about being alone quite a bit in it. You’re obviously feeling physically alone but your dedicated blog followers, myself included, can confirm that while you’re posting your thoughts for us to read, you’ll never be out of ours.

2. 

   Ben July 9th, 2009 at 7:26 pm

   I’m feeling for you right now, going through possibly a toned down version of what you describe. I don’t want to give up the things i get from being with friends, a job or a social circle. I am finding it more difficult to cope. sometimes i don’t even want to cope, i just want to be alone, or with Josh. everybody else is too much work, no matter how much i care for them. sigh.
   Gavin has a point, though, that there are good days and bad days, and somehow we will find ways to get what we want, what we need, and let go of expectations that we were never going to fulfill anyway.
   i HATE being told to cheer up, so i won’t try to cheer you up. it does help me sometimes to know that you’re feeling the same way i feel.
   and when it doesn’t help, i start making stuff

3. 

   Kate July 9th, 2009 at 8:37 pm

   I can understand where you’re coming from, it’s tough. No advice really. You are in my thoughts. Actually, one piece of advice: Please, please, please meet other autistic people. I think that finding that it’s not really very hard at all to communicate with someone on the spectrum will give you new hope that you can be social and have social experiences – just not, perhaps, with NTs. Meeting other Aspies gave me so much social confidence in myself and in the world and I think it would you too. I can help with this if you like. Northhampton and Amherst areas have many Aspies.

4. 

   Susanne Liley July 9th, 2009 at 10:59 pm

   Rachel,

   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/

5. 

   John Dale Lyons July 9th, 2009 at 11:04 pm

   Rach: You never know- maybe your ability to socialize will come back. Maybe it won’t. Either way, there are people in your life who love you and make it all worthwhile. Just be patient with yourself.

6. 

   Saja July 10th, 2009 at 4:06 am

   Susanne – your comment describes my life perfectly. Utterly perfectly. Oh, wow. Thanks for writing this.

   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.

7. 

   Ben July 10th, 2009 at 5:54 am

   Susanne – not sure if you coined it first, but thank for coming up with ‘cumulative overload’. i met another possible aspie artist in my studio’s building, and we were discussing it yesterday, when i mentioned my own cycle of overload, how it used to happen once a year or so, when i didn’t feel like i could cope any more. it was awful, but as i get older, i realize that the overload reaction passes, and my highs don’t get quite so dizzying, and my lows not so deep.

8. 

   LizzieK8 July 10th, 2009 at 7:11 am

   It’ll get better with time. Once you get to the point, when you are missing one of those activities, you’ll be able to list why it wouldn’t be a good thing to do it, that it’s just not worth the recovery, it’ll be easier to accept it’s gone.

   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…

9. 

   Crystal July 10th, 2009 at 5:31 pm

   Awww. *hugs*

   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.

10. 

    silk July 11th, 2009 at 3:23 am

    Wow, I haven’t been able to read blogs for a couple of months, but I’m so glad I caught this one. I fear to even comment because the last thing I want to do is add to the pressure that you’re feeling. But I can’t even fully put into words how valuable your blog is to me. I understand not feeling effective and productive, and not fulfilling a purpose that you set for yourself based on your own desires and interests. As the parent and wife of three guys on the spectrum, I feel like I woke up in someone else’s life all the time. I can relate so much to looking at my friends from high school and college, seeing what they’ve become, and comparing it to what I thought I would do for myself. I ask the same question as you – how could you get to fifty years without a diagnosis?

    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.

11. 

    Bob July 11th, 2009 at 5:44 pm

    I want to talk about fudge. You know — that stuff they sell at fairs and roadside stands that’s full of butter and cream and great flavors like chocolate and peanut butter. Anyone know what “penuche” is? I love fudge. At least, I used to. It’s been such a long time since I’ve had any that I’ve forgotten what it tastes like.

    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!

12. 

    Craig Liley July 11th, 2009 at 8:19 pm

    I hate it when these low times hit. It’s always so easy to compare them to the high times, where you feel on top of the world and almost “normal”. Then suddenly it all seems to crash around you and you look back and say “I was able to do this before, why can’t I do it today?. Being able to see that contrast in your head always seems to make it so much harder not to be self-criticizing.

    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.

13. 

    Stat Mama July 11th, 2009 at 10:19 pm

    One thing that strikes me is how much others seem to be able to relate to what you’re feeling. I think many of us go through this low point. I understand exactly what you mean about feeling the relief. I felt it when we found out our children were on the spectrum. I felt it when we discovered my husband was on the spectrum. And after some inital shock, I felt it after discovering that I, too, have AS. But then it hits. Some things will just never be, and so many things will be a struggle. I come out of this, but I have moments.

    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.