-
May6
Every Aspie is a Working Aspie
Filed under: Disabilities, Making Art, Making Lists, Marriage, Meltdowns, Occupational Therapy, Sensory Processing Issues;12 CommentsOn any given day, venturing outside the walls of my house feels akin to entering a sensory minefield.
Of all the things that feel difficult, driving my car keeps rising to the top of the list. I’ve had a lot of resistance to driving for some time now, which is difficult when your teenager goes to school an hour away.
My daughter has a friend nearby who goes to the same school, so our two families share the driving. My husband does our share of the driving, and the other parents do the rest. Occasionally, my husband is out of town when my daughter is with me. At those times, I am perfectly capable of getting up at 6:00 am, getting in the car by 6:45 am, getting my daughter to the bus stop by 7:15 am, and then driving home.
Perfectly capable. It all goes swimmingly. The problem is that I cannot do this routine every day. When I have to do it, I do a lot of advance planning to clear my schedule for the rest of the day. If I can’t clear my schedule, and I have to do something else in the world, the next day I’m pretty exhausted. I stay home, and if I’m lucky, I might remember to drink enough water.
For some reason, driving feels especially daunting. It must be all the attention that I have to give to so many things at once: other cars, stoplights, pedestrians, work crews, construction vehicles, and road signs. I simply must read all the road signs. Every. Single. One. Then, of course, there are all the various stores, and advertisements, and strip malls, and signs with print and flashy graphics by the side of the road. Of course, I simply must read all of the print I see flying toward me, even though I will never go to MacDonald’s or to my local Chevy dealer. When I think about driving, the sensory minefield image becomes especially vivid.
Now, it’s true that I drive an hour for my OT appointment, but that feels very different. I know that when I get there, I can relax my attention completely. My OT has set everything up so that life doesn’t feel like a sensory minefield. She even asks me how the drive felt. She doesn’t ask whether there was a lot of traffic, or whether I knew which exit to use. She asks how the drive felt. It’s a minor miracle, really.
The drive home is pretty good, too, because I’ve just spent an hour with someone who understands how much work it takes for me to do any of the following:
1. Drive
2. Plan a sequence of apparently simple tasks
3. Transition from one apparently simple task to another
4. Walk through a grocery store
5. Figure out how to put my shoes on without feeling dizzy
6. Keep up with a conversation between two people
7. Keep up with a conversation that involves more than two people
8. Be in a crowd in which people are talking loudly and/or all at once
9. Handle sudden or persistent noises
10. Keep track of visual stimuli, whether moving or stationaryShe also understands that the following are not optional or a waste of time, but activities absolutely essential to my neurological health:
1. Walking or bicycling
2. Making lists
3. Singing and moving
4. Stretching
5. Doing my OT exercises
6. Touching soft fabrics
7. Watching spinning things
8. Writing
9. Resting under 30 pounds of weighted blankets
10. Doing physical labor (the more strenuous, the better)
11. Having a routine
12. Doing art work
13. Stimming
14. Having a good night’s sleepThe husband also understands all of these things. He’s amazing. Today, for example, he asked me whether I could take the car in for inspection, because he has a cold. He didn’t say, “You do it, honey. I’m sick.” He said, “I don’t want to do it, but I realize that if you do, it means dealing with the outside world.” He understands that I need a fair amount of lead time to prepare, and that I will need a great deal of recovery time when I get back.
I felt pretty goddamned awful about having to say no today, but it wasn’t because he was putting any pressure on me. It was because I had to say the words: “I have a disability, and I can’t do these things on the spur of the moment. We need to start thinking about getting some assistance from other people when you’re not feeling well.” It was so hard to say those words. I went outside, dug up some more grass (yes, we still have some, but not for long…) and felt really sad. On the positive side, however, saying those words helped lead me in precisely the opposite direction from a meltdown. Not bad for one lifetime.
I used to be able to do everything. Really. You must believe me. Everything. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work at a demanding job, teach my kid, support my family, pay the bills, cook, clean, plan birthday parties, include all the neighborhood kids in our Jewish holiday celebrations, plant a garden, exercise, and do just about anything anyone asked me to do, except stand on my head. But, as LizzieK8 said so beautifully in her comments to Monday’s post:
“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 overextend our reserves, but we just don’t have it any more to do a full-time job, day in and day out.”
I burned a lot of energy in 50 years trying to be “normal.” I tried to do everything I thought the world demanded of me, and I did it with a very sensory-sensitive neurology, undiagnosed AS, SPD, dyspraxia, and who knows what else.
But those times are over. I’m sad that they’re over. And I’m also unbelievably relieved.
I’m finally learning that a human being is not an infinitely renewable resource. We have to take care of ourselves and use our energy wisely. For Aspies, just walking through the world and taking care of ourselves is a lot of work. For those of us who are feeling the effects of a lifetime of defying the way we were made, taking care of ourselves is the most vitally important work we can do.
© 2009 by Rachel Cohen-Rottenberg
12 Responses to “Every Aspie is a Working Aspie”
-
I still haven’t gotten my driver’s license; after my rather bad experiences practicing, I just can’t see myself being a safe driver because I have so much trouble dealing with all that visual input.
-
I haven’t been doing much reading lately (I’m out of energy — surprise!), but I just got caught up.
I hate driving, too, and it is ridiculous when I have the slightest hint of migraine. It has been years since Hubby and I settled into a mutually agreeable pattern of him always driving when we’re together. Occasionally we break the pattern for convenience’s sake, and inevitably he spends the whole time regretting it. He doesn’t like my driving.
Suits me just fine. -
Stunningly amazing, wow, I am so glad I found you, I am so glad you are paving the way for other Aspies who want to have the right to be who they are, and to be understood about who they are. Wow – thank you for this.
-
i’m only 39, but have found the same thing: that i’ve been using up so much energy trying to pass, that i have very little left over nowadays, and sometimes i dread what the future holds in this respect. i hate having to tell my partner that i don’t have any more energy to be out in public sometimes.
(i don’t have any problems driving, but i don’t do it regularly.) -
John Dale Lyons May 7th, 2009 at 4:36 pm
I have no problem driving, but shopping spazzes me out. The music, the bright lights, the details, the screaming kids, the crowds, the coupons, the snotty cashiers….
-
so good to read this.
I learned to drive at 40. I am now 46 and i have been on my provisional license for nearly 7 years. the max is 3 years in this country but with usual executively dysfunctional “flair” I continue on with my provisional.I am a lousy driver,a nd because of balance and vestibular issues i lean into the centre of the car and drive with my body on a complete slant so my head is aligned with the centre of the car, just below the rear-view vision mirror.
I am also feeling incredible relief around a cessation of this old adherence to an ideal of “normality.” i never achieved it in any way, but my head was filled with self-expectations of somehow taking on a normal life with a normal load like other people.
It’s been revelatory to go to an ASD specialist and to start carving a life suited to ME. i am actually starting to feel good,and like Rachel – hello my friend – I am starting to understand it is not just ok but VITAL i say no to the kinds of things other people take in their stride.
My whole household/family is currently being educated about my ASD and we are all learning to live with it and accept it, rather than fight it and wrestle with it and berate it, which is what i and others did for years in order to IMPROVE me to a state of normality!Yesterday i did my usual Friday thing where i see some people. i do this in a very structured manner once a week. i come home completely exhausted from interacting with people for two hours. On arrival home, I now i factor in rest time after any out and about stuff in the world. Just down time with diaphragmatic breathing, some stretching and quiet. It makes such a difference. In the past, i would battle on and feel as if I had a cacophany of clattering sounds and white shards of mirror in my brain and i would persist with home life and have a huge meltdown with throwing things and screaming and terrible shame and guilt afterwards. I would scream and flap my hands about my head. I would frighten my son.
all that is changing. I am getting a bit of peace here and there. it is new, strange and belatedly welcomed in my life. It is a gift for me and those around me. -
Awesome post.
Driving is an escape for me. The kids are restrained in car seats, and I can plug in my iPod and listen to whatever flows with my mood. It calms me enough that I can focus fine on driving. Still, I know what you mean, and I definitely experience my own resistance to certain things. Shopping, or being in any noisy and crowded situation, is an absolute sensory nightmare. I can only focus on select things at a time, and I am always afraid of screwing something up.
-
I got my driver’s license at 16 like everyone else, and drove for years without issue. Then we moved to Holland, where the rules are somewhat different, and there are bicyclists everywhere, and it was like learning to drive all over again…I was exhausted and on the verge of a nervous breakdown after every trip. (And this was before I remotely knew I had AS.)
After a year in Holland, I had to take a test to get my Dutch license. I failed it. At the time I was livid (did something wrong on two-lane rotundas, which my driving instructor should have taught me), but ever since, I’ve been secretly thankful. So glad I no longer have to drive. Friends and family are always urging me to go get my license, but NO WAY.
I am so blown away by your posts and many of the comments, which so perfectly describe me, too. I am especially grateful for the ones offering an explanation for why things I used to be able to do easily are now so hard, and why I am at an impasse, at 42, in which I can either decide to drop “passing” in a big way, or die–literally. I cannot continue to live the rest of my life the way I’ve lived it up to this point, rewarding as that has been. I did what I most craved as an awkward little girl: I learned how to fit in with the rest of the world. I’m socially adept. But the cost; oh, the cost. There’s nothing left over for the real me, the inner me. And that *has* to change, to save my life. Literally.
-
Well said. I feel better hearing you discuss the limits to how much any human being can do. I’ve recently gone into a health regime and feel physically, and somewhat mentally, better than I have in years. Immediately I think, “I should get a job.” When I was 30 lbs heavier, didn’t move much, I didn’t think about getting a job and all it entails. Now I do, and it’s somewhat harder to keep reminding myself that if I get a job (unless, of course, I could find that all too perfect job) it’ll end badly. I won’t feel good for long as all the energy I have from loosing weight and exercise will be siphoned off by trying to pass. Then I start acting like myself and then I won’t have a job.
In some ways it was easier being a lump….
-
I know what you mean about feeling better and then thinking you can do more. In my mind, I can see exactly what to do, but my body just can’t do it anymore, no matter how much exercise I get.
-
Susanne Liley May 20th, 2009 at 5:44 am
I have never had a license and my family keeps insisting that it’s not as hard as it seems and that I’d get used to it once I try. Never mind the fact that I cannot remember one street from another, or where places are actually located and I have lived in this town for 16 years! The three times I gathered enough courage to try, Hubby took me out late at night to drive through a large parking lot. Once I had driven around a bit he was more than relieved when I let him back into the driver’s seat. I get so nervous that I’d endanger everyone else on the road and find it better to let other people drive who are confidant in their driving skills.
It still seems so strange to me to realize that I was right about myself for so many years, but I thought I was just being lazy. Now I’m realizing how difficult it is to even do simple things, depending on what’s required of me. My family thought I was being purposely difficult when I told them if they wanted to plan any family activities I have to have 2 weeks notice, and then be reminded 3 days before and the day before or I wouldn’t be able to come (my memory is really bad about stuff like that.) I’d spend most of that time trying to pep talk myself and build up my reserve tolerance levels and trying not to completely freak out about the overload that ALWAYS goes along with seeing my family. Even just the other day Hubby was getting frustrated at my mother and commented to me “Doesn’t she realize that if you do major projects (shopping, yard work, etc.) one day that you need to take the next off?” It made me feel really good that he recognizes when I’m hitting overload, apparently even before I did.
-
Susanne, isn’t it great when we realize why things feel so difficult, and that we’re not alone? What a relief!
Leave a Reply
About Me
I'm Rachel Cohen-Rottenberg, and I publish this blog, Journeys with Autism. I'm a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, I awoke to my place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. My latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. My work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurodiversity section of the ASAN website.
My Memoir
"The Uncharted Path is an autism autobiography unlike any I’ve ever read.....I’d recommend The Uncharted Path to anyone on the spectrum, to anyone who has friends or relatives on the spectrum, and to anyone who cares for people on the spectrum. Her book is written straight from the heart.” —Gavin Bollard, author of Life with Asperger’s
“Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today....A highly recommended read."—Kate Goldfield, author of Common Scents: Adventures with Autism and Chemical Sensitivity
“What Rachel has written, few others would be able to....An enlightening journey."—Jon Gilbert, author of Same Child, Different Day
My memoir The Uncharted Path: My Journey with Late-Diagnosed Autism is now available in paperback for $17.95 and in PDF format for $8.95.
To purchase the book, please contact me by email. I accept payment via PayPal, by check, or by money order. You can also find the book for sale in paperback on Amazon.com.
Thank you for your interest in my work.
Rachel Cohen-Rottenberg
rachel@journeyswithautism.com
My Visual Art
Sojourning in the Visual World www.sojournerartist.comUnique Visitors
16,701 | Unique Visitors |
