Journeys with Autism » Blog Archive » Why I Can’t Do What I Used to Do

Jun
29

Why I Can’t Do What I Used to Do

Filed under: Aging, Anxiety, Diagnosis, Marriage, Spectrum Pride;

This morning, I ran across another amazing piece by the brilliant Amanda Baggs called Help! I Seem to be Getting More Autistic! It’s a long, informative piece about all the possible reasons that we can lose abilities as we get older. The section called Burnout especially spoke to me, setting off a cascade of feelings and associations that helped me understand why I can’t do many of the tasks and activities I once did.

Amanda explains that burnout begins because we are working at a level of energy that non-autistic people would use only in emergencies:

“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor

In the article, I would explain why my short trip to the hardware store this afternoon was followed by several hours alone in my loft, writing my little heart out. After all, if you had to walk five entire minutes to the hardware store, buy four sponges, a spray bottle, super glue, and some scotch tape, and then walk five more minutes back, you’d be exhausted, too. If you were me. Or anyone else who has tried to be “normal” for as long as I have.

But back to Amanda’s piece. In the same section, she sums up, well, pretty much my whole life to this point:

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

The problem, of course, is how do you get support services when you’ve made a seemingly phenomenal success of life? Amanda writes:

“Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.”

This problem is why I have decided not to apply for disability. I don’t think that anyone at the Social Security office could begin to understand what a difficult time I’ve having. I can’t blame them, because I’m just beginning to understand what a difficult time I’m having. Fortunately, I have Bob and his family to help me, so I don’t have my back up against the same financial wall that so many others do.

After I read through Amanda’s piece, I went downstairs to the kitchen, and I told my husband that I feel even more adamant about getting people to help with basic tasks. We’ve hired a housecleaner who is starting this Friday (yay!), but we need to continue reconfiguring our lives to deal with the reality that 1) I’m autistic and 2) he will be able to do less for me, not more, as he gets older.

From the time I was first diagnosed, my husband has used a great image to describe what has happened to my life. He said that I’m like the Road Runner in the old cartoon. The Road Runner would run right off a cliff and be perfectly fine—until he looked down. Then, he’d crash. Every time I say to Bob, “What has happened to my life? Why was I able to do so much more before?” he gives me the same answer: “You looked down.”

I looked down and saw that I’d been running off a cliff for some time. I just didn’t know it. By trying to take care of everything myself and not asking for any help, I was working way past my capacity. When I got my diagnosis, it was like finding myself in mid-air. I had to face the inescapable reality that gravity was going to win.

As Bob and I talked about the image of falling, I suddenly understood the source of my worst nightmares. Since childhood, I have had two related, recurring dreams.

In one version, I am on the ground watching a plane or a bus or a car, with people in it, zigzagging across the sky. The vehicle is out of control, and I know it’s going to crash, with all those people in it. I am terrified for the people who are going to die, and as the vehicle starts plunging to earth, I know that if I don’t wake up, I will also die. I am always able to wake up just before the vehicle hits the ground.

In the other (and even more terrifying) version, I have climbed to the top of a very high place using several ladders or flights of stairs. The problem is that the ladders or the stairs are on the outside of the structure, and I suddenly realize, to my unspeakable horror, that I cannot get down. Going back down the ladders or the stairs is out of the question. I am very high up, the stairs or the ladders are nearly perpendicular to the ground, and the sight of the earth below is dizzying. I know that if I try to get back down, I will fall and die. There is no way to get down gracefully. I stand there wondering how I could possibly have climbed all the way up without realizing that I wouldn’t be able to get back down. And then, I’m so scared that I wake myself up.

Both kinds of dreams are about an autistic person trying desperately to be a super-competent neuro-typical person. All my life, I had climbed the ladder of success, and I’d spent my life convincing people that I had it all together. And all that time, behind the scenes, I was terrified. In fact, I can barely remember a moment of my earlier life in which I wasn’t anxious or afraid about something. Now I know why.

I was always afraid of falling off the ladder of success. I was always afraid of a “fall from grace.” I was always afraid that someday, I wouldn’t be able to “do it all” anymore. I was afraid that someday, I’d have to be who I really am.

That’s a fall from grace? What a laugh! Everyone should be so lucky. It’s been more like a fall into grace. Here I’ve fallen from this high ladder I climbed, and look where I’ve landed: I have a husband who loves me as I am, a kid who loves me as I am, friends who love me as I am, an online community that gives me a phenomenal amount of support and understanding, and a local community in which I feel safe coming out as an autistic person. So what’s not to like?

Sometimes, I wonder: If there had been an Asperger’s diagnosis when I was younger, would I rather have been diagnosed at 5, or 12, or 18 years of age than at 50? After all, I would have had many more supports and a much more realistic view of myself. But each time I ask the question, the answer is no. If I’d been diagnosed earlier, I wouldn’t be where I am right now. I can’t regret the past, because it’s brought all the people I love into my life.

Tomorrow, my husband is going with me to the thrift store. We’re going to walk around, watch how I’m feeling, and consider how I might make a place for myself there. When I told my husband that I was going to the shop tomorrow, just to get a feel for the place again, I didn’t even have to ask him to come with me. He just knew I needed him to be there.

While my life has not been the easiest life, it hasn’t been the hardest, either. In fact, it’s become a very interesting adventure. I hope it continues so.

© 2009 by Rachel Cohen-Rottenberg

12 Comments

12 Responses to “Why I Can’t Do What I Used to Do”

Ben June 29th, 2009 at 5:29 pm

of all your recent posts, this one has me a little more stunned than usual. i don’t really expect to get this kind of understanding and affirmation from reading someone else’s experiences. it is a little scary for me, in much the same ways. i was never traditionally successful in relationships or at jobs, but felt that i was always working so hard, and didn’t understand why i could not give myself credit for managing to keep so many of my own plates in the air. i have a very understanding partner, but i worry about the confusion and unknown territory we’re both entering since my diagnosis, and whether or not i’ll be “too much work”, as i have always been
fortunately, i keep sending him posts like these ones. the ones that explain so much about what i’m going through, and how i feel about it, in better words than i think i can manage.
the feeling of being “not alone” and understood was almost overwhelming for me while reading just the first few paragraphs.
thanks again.
goodfountain June 29th, 2009 at 9:10 pm

It’s nice to hear that you have such a positive outlook. I am really looking forward to your book.
Kate June 30th, 2009 at 4:13 am

I agree with what the first poster said. Wow. You are amazing.
Kate June 30th, 2009 at 4:14 am

And I like the journey analogy too. I’m getting quite sick of my own journey. But I know it’s one I need to be on. Kate
LizzieK8 June 30th, 2009 at 7:35 am

Great post. Burn out… before I “knew” about myself and burn out hit around age 45 or so (after 22 years of marriage and six kids) when I told my now X I had to take care of me, he told me how selfish I was.

It took another almost ten years to find out what I was had a name, and since then I’m trying harder and harder to not “pass” unless I have to. I just basically gave myself permission to not do anything I didn’t want to. Of course, it has to be within reason, but I have learned what I have to do and what I thought I have to do are generally very different creatures.

I’ve found a few people and places I feel safe in, and interestingly enough found that earbuds and an MP3 player really keeps people from trying to interact with me. I put a book in player, and feel much more comfortable about “going out”.

I can get by with a “smile” and nod when clerks try to talk to me, and can also pretend I don’t hear people that ignore the fact my mind is occupied with whatever I’m listening to…. And I don’t feel I have to be the polite one when people obviously feel whatever they want is more important than what I want. I sometimes envy my autistic grandson who spends most of his time in his own world. At six now, no one expects him to interact…they just let him be. (Not his school of course, they insist he participate and interact…. so sad.)

Why not try at least the ear buds if listening to something is too much stimulation. They block out some sound and imply that “you are busy” to others….kinda like if you have a phone up to your ear….
John Dale Lyons June 30th, 2009 at 8:09 am

This is scary, because I have not hit burnout yet. I was obviously autistic as a child, but now the signs are so subtle as to be non-detectable to those who don’t know me well, or haven;t observed me after long periods of time. Sounds like I’m a prime candidate. And my ADD has gotten worse. But I can’t afford the loss of income if I can’t work and disability doesn’t pay a lot. This makes me very worried about the future. I can’t afford to burn out until retirement, which is almost 20 years away, and I have a high stress job.
April June 30th, 2009 at 5:13 pm

Thanks… I’m totally beyond burnout. That is to say, I’ve had a LOT of it in the last few years! Been reading through the origional (thanks for the link) and this jumped out at me:

“It can be a normal part of even non-autistic people’s development, that when a certain difficult skill is being gained, others are temporarily lost. In autistic people, this loss or disruption of skills can be longer-term or permanent, and more prominent than it would be in a non-autistic person. An autistic person who learns to talk may lose some social skills, an autistic person who gains some social skills may lose the ability to talk, and all kinds of other combinations of things. This may be a natural part of learning for some people, and in others it may be a sign that they’re being pushed too far.”

This quite explains how I forgot about using the telephone book after living 9 months abroad and why I lost my ability to put together a logical 3-word sentence when I went to art school!

I could kiss you!
Saja July 1st, 2009 at 4:44 pm

Very interesting article – thanks for the tip, Rachel.

April – Your post suddenly put my lack of a Dutch driver’s license into context (though it isn’t exactly the situation to which you refer, where gaining one skill leads to loss of another). I got my driver’s license (US) at 16 like everyone else and drove for 20 years before we moved to Holland. It was automatic; I didn’t have to think about anything. After we moved, I drove for about a year before I had to get a Dutch license, and it was TERRIFYING. Bicyclists, different right-of-way rules, different signs (in different colors)….I was worn out driving five miles down the road. And I failed my driving test (something about two-lane rotundas I didn’t get right….pfft, didn’t have them where I come from). And you know what? Underneath the pissed-offness, I was secretly incredibly relieved. That was six years ago, and I haven’t had a single urge to go for my license again since, despite a lot of urging from well-meaning family and friends. Since I’ve found out I’m autistic, now I know where the relief comes from. And I know I don’t have it in me to master driving here (in the sense of becoming comfortable with it; I’ve already learned the rules).
Saja July 1st, 2009 at 4:47 pm

I guess my failing to pass the Dutch driving exam could be called “losing a skill, period” . Or failing to gain a skill, if you consider (as I do) driving in a new country under quite different rules to be a skill distinct from driving in one’s home country.
karen. July 3rd, 2009 at 10:31 pm

this post made me cry. your readers should explore the writings of and read more about amanda baggs if they haven’t. she has made some videos on youtube, as well.

at 32, i just got diagnosed. still waiting for the report, it’s that fresh. but i’ve suspected AS for a while. i realized at some point that i just couldn’t meet what was demanded of me. i realized how much i was coming up short. i had no idea that it was all taking me so much more energy than other people.

like listening takes far more energy because of central auditory processing disorder. so i get tired. i stop listening. i retreat. i seek silence. rest. i am always tired.

so this post made me cry, because it hits me in waves as i take more in, just how much more sense my life makes, and like you said, a fall *into grace*.

shalom
Rachel July 4th, 2009 at 5:50 am

Hi Karen,

I’m so glad you found my blog, and congratulations on getting your diagnosis! Even though Asperger’s comes with its difficulties, the feeling of life finally making sense is a profound relief.
Taylor Selseth October 26th, 2009 at 11:07 pm

I know exactly what you mean by burnout. In my case I burnt myself out trying to push myself too hard in college. Got nearly straight As for the first 3 semesters and then totally BOMED the 4th, partly from Chemistry Lab overload and partly from trying to take too many classes at one time. I’ve been taking a couple years off and will be going back next Fall, and not push myself to breakdown this time.