On a good day (and I have my share), having AS is an interesting way of engaging the world. It makes me feel like a cool, eccentric, artsy, non-conformist person. It’s even necessary to the health of the planet, because it provides diversity in the ways that human beings see the world and in the gifts they bring to it. Hurrah for AS.
On a bad day, AS is a neurological disability so limiting that I wonder when this strange, unexpected dream will be over, and I’ll wake up again and be the person that everyone has always expected me to be.
Lately, I’ve been feeling very disabled. Nothing has really changed about the effects of the AS and SPD. I’ve just reached another level of opening my eyes and seeing how disabling they can be. Perhaps all the evidence has been coming in for awhile, and I finally noticed it. Or perhaps my desire to see AS in a positive light has kept me from looking at the negatives.
Oops. I just said negatives. Just writing that feels like blasphemy. But I have to face how things really feel, right now, not how they felt last year, not how they might feel tomorrow, and not how I might wish them to be at some undetermined point in the future.
Several things have come together to bring me to this moment:
1. My Deer in the Headlights experience of last Monday. I didn’t get over it till the end of the week. Tuesday was a total failure-to-launch day. I went to work on Thursday, and I was so disoriented and tired that doing simple tasks felt overwhelming.
However, as a result of posting about being in the eye of the monologue, I got some great suggestions on how to handle people who talk at me, and I’ve already put one suggestion to use. Someone wanted to talk about something last week, and my nervous system just yelled “No!” Fortunately, my mouth was still working at that moment, and I said, very politely, “I really can’t. I’m getting ready for work.” It worked! And it was the truth. I did have to get ready for work. Which leads me to the next issue.
2. Always wanting to be honest. This is a big Aspie thing. I think about all the ideas for how to extricate myself from people who talk at me, and I find myself rebelling against all the polite things I can say. I just want to be honest. The dialogue in my head goes something like this:
Okay. So I can say that I have to use the bathroom, or pick up my kid, or get ready for work. Who can argue with that?
But that doesn’t really get to the root of the problem, does it? Do I really want to make an excuse each and every time the same person talks to me?
And besides, could I do it? Could I really be that indirect on a regular basis? Wouldn’t it be easier to just say, “I have Asperger’s Syndrome, a high-functioning form of autism, and I can’t take in this amount of speech”? Wouldn’t it be easier to just be done with it? Because, after all, I can come up with all kinds of exit lines, but the damage has already been done in the first few minutes. I’m totally overwhelmed. Past that point, I’m just hoping against hope that the person will self-modulate and be quiet.
I know. It never happens. I always have to leave the scene. But I can dream, can’t I?
Sure, I can dream, except that while I’m dreaming, someone is neurologically pummeling me without even realizing it. I really need to say something.
But can I really say out loud, “I have Asperger’s Syndrome, a high-functioning form of autism” to someone in a town this small? It’s a friendly town, but still.
Which leads me to the next issue.
3. Hiding.
Okay, so what’s the problem with saying I have AS? Or that I have a neurological disability? Or that I’m autistic, plain and simple, without qualifiers? Well, the injured, confused, out-of-sync kid in me says, “You can’t say that. Everybody will hate you. They’ll think you’re weird. They’ll think you have no feelings. They’ll think you’re damaged goods. They won’t get it. At all.”
But I don’t think that’s it. I really don’t. I’ve been talking it over with the husband. He reminded me that anyone who freaks out and wants nothing to do with me is actually doing me a favor, because such a person would never be a friend anyway. Good point, husband.
So what’s the problem? I’m used to hiding. I’m used to putting on my “I’m perfectly functional, thank you very much” face and performing my “I’m normal” act while attempting to outsmart the world. I am so sick of it that even the most hyperlexic Aspie couldn’t find enough words to describe how old this has gotten.
I just want to be myself, dammit. How hard is that? I just have to come out of hiding and say, “Hi, everybody. It’s me!”
4. Yeah, but who’s me?
5. Great (and failed) expectations
Okay, so here’s who I was supposed to be: a straight-A student (check), a classical pianist (check, but that ended at the age of 18, when I couldn’t take the stress of putting on a face and performing…hmmm…I see a pattern here…), an Ivy League graduate (except that I left after two years because I couldn’t hold a pencil without shaking), a well-respected English professor (except that I left with my Master’s degree and a PTSD diagnosis), someone important in the world (like my high-school friends and extended family members who are now famous musicians, or famous writers, or famous doctors, or famous social science researchers), a rabbi or a cantor (except that people overwhelm me and I get stage fright when I have to sing in front of them), and a perfectly dutiful daughter (enough said).
I know I’ve done some great things. I’m a good mom, I used to have a very good career, I have a wonderful husband, and I love where I live. I’m not complaining about any of that, and I’m not giving it less than its due. In fact, sometimes I focus on all my blessings so intensely that when the other side of who I am grabs my attention, I don’t recognize myself and I rebel against what I see. Here’s the other side of who I am:
a) I can’t do more than one activity out in the world in a single day. Example: On Thursday, we nearly ran out of bananas, one of my staple foods. My husband had said he might pick some up on his way home, if he had time before a friend came over. He got back without the bananas. I started to get upset with him, but then I finally said, “I’m not upset with you. I’m upset that I can’t go to work for two hours and then go to the f#*&ing grocery store and buy some f#*&ing bananas in the same f#*&ing afternoon.”
Which leads me to the next issue.
b) I find myself lacking in essential survival skills, such as the ability to go grocery shopping on a regular basis. My husband does it, and he enjoys it, but I am going to make myself go grocery shopping each Wednesday if it’s the last thing I do for the day (and it very well might be). We had an extended discussion about this issue the other day, and I got to the point of saying, “I just need the dignity of being able to get my own food.”
I used to be in a Ph.D. program and now I’m working on the dignity of getting my own food? And did I mention that I don’t cook, either? My husband does that. I clean the house, I keep it from getting cluttered, I do all the dishes, I make sure my daughter’s laundry gets done, and I work in the flower and vegetable gardens. All that’s cool. I just wish I could do some other things that other people find so simple.
c) I can’t work. I used to work full-time at a pretty high-powered job. Now two hours arranging jewelry and housewares wipes me out. How did this happen? A friend of mine thinks that the PTSD finally caught up with me. I think that it’s a question of aging. Apparently, sensory integration starts to get harder for everyone as we age, so for an aging Aspie, it’s especially pronounced. It’s probably some combination of PTSD, AS, SPD, and the fact that I’ve worked against it all pretty much non-stop for most of my life.
So, there you have it. Wonderful, loving, confused, disabled me. I am constantly struggling to accept myself just as I am, on any given day.
I feel embarrassed to say it, but I feel a lot of shame about all the things I can’t do. Why should I feel such shame at having disabilities? I mean, if I couldn’t walk, would I feel like this? Perhaps I would. Perhaps I live in a culture that teaches me to be ashamed of anything atypical, and perhaps I’m no more immune from that pressure than the next person.
I’m having a hard time. I know it will pass. It feels good to be able to talk about it.
© 2009 by Rachel Cohen-Rottenberg
I can totally relate. My husband had to turn in a school assignment incomplete because he couldn’t finish by the deadline. It sent him into a tail spin. I found him curled up on the couch in the beginning phase of a melt down. He had difficulty coping with the “incomplete” assignment. That report was so perfect I doubt it will appear unfinished to the professor. You are not alone. . . .
I am very grateful we have someone like you to speak for us. I can’t begin to enumerate how much I relate to the items on that “laundry list.” Sometimes I hate myself for having AS and ADD. Sometimes people, including myself, think I’m getting “worse” as I get older. Only someone who’s been here can really know.
I moved my blog because I’m using a shared computer and was afraid some people might find what I’d written. I’m still me though.
I really hear what you’re saying about might’ve beens. I could have been an academic if I had been stronger and more socially aware.
I used to look back on my twenties and think how much time I wasted when I didn’t know I had Aspergers. But recently I’ve learnt that my negative experiences are a positive thing. I’m now able to advise others on all sorts of things, and I couldn’t do that if I had had a 100% successful life.
I’m not suggesting you do this if you don’t want to, but is there is anything at your synagogue you can do to make people more aware of neurological disabilities?
p.s. Does it get worse as we get older? I’m finding nowadays that I prefer standing in silence at the bus stop rather than reading. I wonder whether I’m tiring more easily.
Hi Soph,
I’m glad that you and your blog are back!
Thanks for the suggestion about educational outreach at my shul. The spiritual leader there would very likely be open to it; he has been very supportive of my husband and me. I also contacted the editor of one of the local papers, who said he might be open to my writing occasional articles on living with AS/ASD. I would like to do some advocacy and education locally, so these might be a couple of places to start.
In answer to your other question, I’ve read that sensory processing goes more slowly as we age. I definitely feel it in myself.
Oh, Rachel…
First, thanks so much for sharing the complexity of your feelings. They help me so much in understanding my teen-aged daughter.
Second — I wonder if you are so much more aware of “limitations” because you are understanding so much more about how Aspergers affects you than you ever did before? I mean, it’s obvious, but it seems pretty natural to me that you’d be feeling more stressed as you understand your reactions to things in a new way.
Third — while I totally understand how frustrated about feeling how worn out and overloaded you get after one activity, your work, etc., I wonder if it’d help you to remember that neurotypical make accomodations for themselves ALL THE TIME, and quite unapologetically, too. It seems to me that you have recognized what you can deal with and want to deal with, and you’ve found effective ways to eliminate the stuff that is difficult or trying for you. Your realizing that it’s hard for you to deal with more than one outing per day is a really effective, helpful realization. All these years you’ve struggled to do more, and you’ve DONE it, but with great impact on your sanity and happiness and ability to cope. Now you’re realizing the cost of pushing yourself, and you’re choosing not to impose that cost on yourself. I think that’s quite healthy and something neurotypical people do too for different reasons.
And a grocery hint: Do you have Safeway near you? Safeway has a shop-online thing where you select your groceries and they deliver them the next day or whenever you choose. It costs from $5 to 10 depending on how much you spend in your order. But it’s wonderful and could well save you a lot of agony. If you don’t have Safeway, check to see if there are grocery stores that do online shopping as well. It could be a helpful solution and save your Wednesdays!
Take care, and thank you so much for continuing to share your experiences. My thoughts are with you so much.
Diane
oy, do i have days (weeks) like this.
lately, i’ve been feeling my limitations as well, and realizing i need to not tell everybody i meet about new things i’ve discovered i can’t do, or can’t do well. they think i’m running myself down, and then i don’t really feel like explaining.
sometimes i just forward the link to one of your posts to my partner, since it saves me the energy of having to explain, and not doing it as well.
sometimes i feel like AS is an excuse to be overwhelmed or lazy, or a reason to be different and not have to conform. and then i remember nobody would choose to feel how i feel sometimes. i’m hyperlexic and perform well in the world much of the time, but feel that only somebody with AS would really understand how exhausting it can be. unfortunately being alone all the time robs me of stimulus and ideas and new things.
i feel your pain.
thanks for writing.
Ben
Amazing post, you hit the bull’s eye every post. i want to send everything you write to everyone i know it’s that good. Your emotions and feelings, believe me, are identical to mine. Good for you for getting it out and sharing. PS I’m in Oregon now!
Since I discovered my AS (a little past the age of 50), I’ve been working on not trying to pass for normal unless I absolutely have to. I accept I need an advocate when I go to the doctor, and that I stay in the house or my room if life has been too difficult. I ask for help when I need it, but only from those I trust to not lecture me on over reacting.
Why is work so overwhelming now? My theory is that we’ve spent so much of our life using up our energy to pass for normal, that we just don’t have the reserves for full time passing anymore. We can do it when we have to, (if given enough time to prepare) and we know better how to take care of ourselves when we’ve had to over extend our reserves, but we just don’t have it any more to so a full time job day in and day out.
It’s hard to stop comparing oneself to the “rest of the world”. It makes us angry we can’t do the same things they all can (appear) to do. Once you start accepting what you can do, where you are, what’s going on within you and plan around it and accept it, it will be easier. Just like when one breaks a leg. There are limitations. If those limitations are not accepted, the owner of the damaged leg will be angry and frustrated and make life difficult for everyone around. So, just accept whatever your limitations are and allow others to do what they can. And yes, if you were disabled, in a wheel chair, etc., you’d still feel angry at your disability. Sometimes because it’s unfair (pity pot) and sometimes because others have to help you.
Even NTs have limitations and they work around them….
Once you tell someone you have AS, many/most become afraid and don’t know how to react to you. Which makes it even worse cuz they tiptoe around you and try not to interact or upset. It’s easier to just grit your teeth and smile/grimace. I’ve also found if you just ignore people (strangers) trying to talk at you they quit. They may think you’re deaf or rude, but, hey…. at least they leave you alone.
Try to quit making yourself compensate for all the things you consider disabilities. No, it won’t endear you to the public, but, hey, chances are they really don’t like you anyway, so why try to act in a way that wears you out and doesn’t accomplish anything?
Wow…You guys rock! Every single word was just the medicine I needed. How amazing! Thank you.
I feel like a bunch of letters. AS, OCD, PTSD. If one doesn’t have me, the other does. Nightmares by night, obsessive cleaning rituals by day, and sensory hell when I have to interact with groups of people, bright lights, noise, dogs, etc. I feel like I am constantly burning the candle at both ends some days, and sometimes I just want to throw my hands over my ears and scream STOOOOOOPPPP!!!! so the world would just stand still and quiet for a second. It won’t happen, but, you know.
But other times, I feel as if all of this affords me a unique perspective. I can think deeply about many things, focus intensely and learn vast amounts of information, offer understanding to many people who are struggling. I have achieved a lot, in spite of all of this, and with no help. What I think it all comes down to is that we have challenges, and we have gifts. Like all people. Ours are just different. We are differently challenged and differently gifted. We are not everyone else. Comparing only brings misery, most of the time. (Especially for people like me who always notice the greener grass on the other side of the fence!)
About the household things, I have my issues too. I struggle DEEPLY with dishes (metal pots, metal silverware, add water = sensory hell). Hubby does the dishes, and I know he hates it, and I feel awful not doing more. I try to load all of the plastic items into the dishwasher, and most of the glass, thus lessening the work he has to do. And I do the laundry and cleaning, and we share the cooking tasks. But dishes, ugh. It’s just one of those things I can’t really deal with normally.
I can relate to Diane’s comment. NT’s make excuses for themselves all the time. You find it hard to “measure up” to an NT ideal that does not really exist. You are disciplined in many ways, and hard on yourself. A perfectionist. You sound like my daughter.
Those are great qualities, but don’t let yourself get trapped by the “I have to be like everyone else” lie. Why should you? You have a lot to offer just the way you are. I feel strongly that you should not make excuses for yourself, and that you should not compare yourself to anyone but yourself. As long as you are comfortable with yourself, and you are loved and supported by family and friends, that is what matters.
As far as grocery shopping Stop and Shop offers a Peapod service. It’s awesome.
Stat Mama and Erin (and everyone else, too!): Thank you for all your kindness and support. You’re right: I have to accept myself as an individual, and I have to stop comparing myself to others. I’ve spent so long trying to be “normal” that it’s a reflex to compare and then to judge myself negatively. But I can replace old habits with new ones. Really. I’ve done it before and I can do it again!
When I ask my husband about all of this, he just smiles and says, “I’m perfectly happy with who you are.” Sigh. I hope it won’t take a million iterations of that until it sinks in.