Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!
I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.
I guess that’s it for today. Shortest post ever . . .
Ninety-eight percent of the time I’m good with being autistic. I was going to say “fine with being autistic” or “okay with being autistic” but I don’t want to use tepid adjectives. I really truly feel good about myself most of the time.
Then there’s the other two percent. The hard, ugly, maybe I shouldn’t be saying this but I’m wishing for normal two percent.
When I was four or five years old, I wished I was a boy. Boys got to roughhouse and play cool sports and go shirtless in the summer.
I tried the shirtless thing. It landed me in trouble, though as far as I could tell I looked no different from the shirtless boys in the neighborhood. Later, I hung around the pick-up games and sometimes the older kids let me play. I learned to throw a tight spiral and catch a long pass no matter how bad it made my ice-cold hands sting afterward. Eventually, I learned to fight.
The desire to be a boy faded.
In third grade, I wished my curly hair was straight like Marsha Brady’s. All of the cool older girls-and by older I was thinking fifth graders–had straight hair. Somehow, it seemed like straight hair would magically make me popular.
A couple of years later “Farrah Fawcett hair” was all the rage, and if I spent enough time with my mother’s blow dryer and roller brush, I could feather my hair perfectly. It didn’t make me popular but it cured me of the illusion that better hair was the key to eternal happiness.
I’ve wished for other things over the years. To be taller: more clothing choices. To be more coordinated: I didn’t make the cut for high school sports. To be more feminine: I’m not sure why, exactly.
As I’ve gotten older, the wishes have become more amorphous.
Now I find myself trying to sort out where this wishing to be normal falls. Is it like wishing for Marsha Brady hair–that one elusive change that will make me magically popular? Or is it like wishing to be a boy so I can play shirtless in the summer?
Surprisingly, I think it’s more of the latter–more of a practical wish. You see, when I most find myself wishing to be normal is when I see the people around me struggling with the–well, for lack of a better term, let’s call it the side effects of my autism.
I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.
This is when the wish to be normal sneaks up and grabs me.
I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.
It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.
And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.
Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.
I’m not sure it even matters. This will all pass. It always does.
At some point, I see the illusion for what it is, and the desire fades.
When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on. I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.
I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.
Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.
And so I was confronted with the question I’d been avoiding: am I disabled?
Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:
From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.
Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.
As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.
So, yes, I’m autistic and proudly so.
But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:
A physical or mental condition that limits a person’s movements, senses, or activities.
Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.
Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.
There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.
Well, on most days I wouldn’t.
But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.
Do other people see me as disabled?
Undoubtedly some do.
Maybe the real question is, does this bother me?
I guess it does, on some level. Would I be writing about it if I didn’t?
I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.
So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.
some related posts by other bloggers about labels, how we identify and the significance of language:
I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.
This is the final post in a series about being a mom with Asperger’s.
There’s some question about how having a parent with Asperger’s affects a typical child. I definitely see ways in which my aspie behavior has influenced my daughter’s behavior. She’s told me stories about how friends at college or colleagues at work have pointed out deficiencies in her social skills. Although she’s a very empathetic, compassionate person with a high emotional IQ, she occasionally does things that others consider thoughtless.
Recently, Jess was talking with a friend who was discouraged by his job search progress. Her response was much like mine would have been. It’s a tough job market for new graduates and you just have to keep at it. When he expressed his frustration at how unsympathetic she was being, she realized that she was saying to him what I would have said to her.
Although she understands social nuances, she sometimes chooses not to “play by the rules” because she’s seen how a less conventional approach has affected her at key points in her life and she finds some value in it that is probably hard for people raised in typical families to relate to.
She’s also related stories to me where she was shocked to find out that other people thought she was being rude–for not sharing a birthday treat, for example. These were instances where she simply didn’t think about what the right thing to do in that situation was. More than one person has attributed these faux pas to her being an only child, but I think it has more to do with my AS than her lack of siblings.
So you can see where being an aspie mom is going to result in your kids picking up some socially unacceptable habits, no matter how hard you try or how socially adept they seem to be.
Having an NT partner or spouse can go a long way toward helping you “mind the gap” when it comes to parenting. My husband is everything I’m not when it comes to social skills. He’s naturally compassionate, outgoing, empathetic, and confident. He can walk into a room full of strangers and strike up a conversation with anyone. People instantly love him. When it comes to our daughter’s social skills, I give him 100% of the credit. He modeled behaviors for her that don’t come naturally to me and that I’ve never learned to fake well.
As parents, we haven’t always seen eye-to-eye. There were times when he thought I was being too cold-hearted and there times when I thought he was being too sentimental. We’ve had to compromise on some issues and agree to disagree on others. We’ve both made mistakes. But we’ve also come to realize that we have our own strengths.
When Jess needs sympathy or relationship advice, she usually talks to her dad. When she needs help filling out forms her new job or fixing her computer, she calls me. She intuitively worked out what we can each give her as parents long before any of us knew what Asperger’s was.
That’s the thing about moms with Asperger’s and their kids: they know how to adapt.
This morning I wrote a post about adult autism. I came to the keyboard armed with statistics. I hashed out arguments. I agonized over the wording. I framed my life in terms of the grim numbers I’d found in the research.
When I was finished, I walked away from the computer feeling unsatisfied and restless. Does knowing that 14% of adults with ASD are married or 25% have at least one friend really mean anything? We can create a composite of averages, saying this or that about adults with autism, but that composite person doesn’t exist.
The average American family has 1.86 children. Do you know anyone who has 1.86 children? Of course not. The averages are just that. Fictional composites created by aggregating data and finding the mean. Ironically, that mean often doesn’t exist.
We can’t define autistic adults using averages any more than we can have 1.86 children in our family.
Tonight, I did what writers do. I deleted four hours worth of work and started over.
I decided to leave the statistics to the people who really need them, the advocates and policy makers, for whom they are tools of the trade.
Through the lens of humanity, quantifying something so complex and varied is a futile undertaking. The minute we divide ourselves into those with friends and those without, those with jobs and those without, those with partners and those without, we set up a false dichotomy.
Life is a journey, not a snapshot. We may shift in and out of those categories on our journey. We may intentionally choose not to join one side or the other. We may choose not to be quantified according to another’s standards of functionality.
We are individuals and as such we can only be understood as individuals, one at a time.
As I so often do, I went to the opposite extreme in search of inspiration. I abandoned statistics in favor of Tibetan Buddhism.
If I could explain in words how I got from one to the other, I would, but the closest I can come is this: I found myself standing so close to this subject that I felt blind to the shape of it and as I struggled for a solution, shuffling through bits of ideas and images and memories in my head, puzzling out how to describe something that refuses to take a single shape, I came upon a fragment of the quote below, stored up from some long ago reading or lecture:
Like the mountain, our lives need to be observed at a distance. To take any one moment and say it defines who I am is to diminish the whole of me, the greatness and complexity of all that I’ve been and will become.
Like the mountain, the form of our lives can only be understood fully by taking stock from all sides. Look at my life from one side and it looks dull, flat, unformed. Look from another angle and you’ll find texture and depth, hidden crevices jagged with fallen rocks and outcroppings worn smooth from the battering winds.
Like the mountain, experience reveals us to ourselves. Walking through rain and snow, basking in the sun, weathering the storms, we find our strength and frailty, we form bonds with others and choose which paths to walk alone.
With each passing season, I feel myself growing and changing, sometimes subtly, sometimes violently, but changing, always changing.
To see, to understand, to experience.
Instead of the statistics I’d planned to leave you with, I’ll give you people, others on the spectrum who are sharing their stories in their own words:
An autism diagnosis changes everything. Life after autism will never be the same. Or will it?
Before I studied Zen, mountains were mountains, and water was water.
After studying Zen for some time, mountains were no longer mountains, and water was no longer water.
But now, after studying Zen longer, mountains are just mountains, and water is just water.
~ Ch’ing-yüan Wei-hsin
An autism diagnosis is a lot like this. Inevitably, there is Before and After.
Before, I was me and Asperger’s was Asperger’s. My thoughts and actions were shaped by my personality, my upbringing, my environment and my choices. I thought of them as my own. Asperger’s Syndrome was something that described other people.
After learning that I have Asperger’s, I was no longer me and Asperger’s was no longer a label applied to others. Suddenly, I was Asperger’s and Asperger’s was me.
After, everything I do, say, think, feel, experience is Aspergerized. Exhausted after a long shopping excursion? Sensory overload. Tripped and fell while running? Motor planning deficit. Didn’t think to send my daughter the title to her car when she told me she was selling it? Poor executive planning.
“I’m an aspie” is my default explanation these days. I no longer know where Asperger’s ends and I begin–yet I constantly attribute my actions, thoughts and behaviors to this separate thing called Asperger’s.
While I appear to have a deeper understanding of myself thanks to my newfound understanding of how Asperger’s influences my behavior, there is a long journey ahead before “mountains are just mountains.”
The me that I was before learning about Asperger’s will never exist again. But the me that I will become–the me that no longer needs to differentiate between Asperger’s and I–that me is still a long way off.
When I arrive in the place where I can say I am just me and Asperger’s is just Asperger’s, before and after will cease to exist.
It feels good to check “college graduate” off my list of Important Life Accomplishments, but I got something far more important out of college than a degree.
I got Asperger’s Syndrome.
Not literally, of course. I was born with Asperger’s, but I managed to get through more than four decades of my life without knowing it. The process of attending classes made me realize how different I am from most people. Until I ventured out onto campus, I’d carefully structured my life in a way that let me avoid having to face my differences too often or too blatantly.
I’ve been my own boss since I was 19, which has allowed me to decide who I work with and how. I make the rules. I decide what’s acceptable workplace behavior. Walking around in my socks? Yes! Bringing my dog to work? Why not? Eating lunch in my office with the door closed? Totally normal.
By ensuring that I was the one making the rules, I wrapped myself in a cocoon of relative safety. If I didn’t want to do something, I delegated it, hired someone to do it, or avoided it.
Taking classes at a university forced me to follow someone else’s rules if I wanted to succeed. I was judged on not only my academic work but my communication skills. My ideas were subject to scrutiny. I had to make presentations and work in teams. There was no locked door to hide behind while I ate lunch.
This was a lot to put up with. On the other hand, I really wanted to get a degree, to prove that I might be a little late, but I could make it through college.
I did my best to fit in where I could. When things got rough, I sucked it up and muddled through, telling myself that as a ‘returning student’, most of the young people in my class were going to look at me funny anyhow.
It’s hard to say when I went from thinking “I’m a little odd” to “maybe there’s something systemically different about me.” The process was a lot like putting together a puzzle–connecting pieces here and there, assembling bits of the scene but not being able to see the whole picture until dozens of those little connections are made.
A few of the key puzzle pieces:
The sociology class assignment that asked me to describe a time when someone’s body language didn’t match their words. My initial response: What body language? When we shared our answers in class, I discovered how unusual it is to not instinctively notice body language.
The way professors so often asked me if I had a question or looked at me while asking something like is everyone following what I’m saying? I didn’t know it at the time, but I often frown (a sign of confusion) when I’m concentrating.
The universal look of surprise I got from professors after the first test or paper was graded. I rarely speak in class and when I do, it’s a crapshoot whether I’ll completely misinterpret a question, give an off-the-wall response or get the right answer. But write a 30-page paper about the economic impacts of environmental regulation? Yeah, I’m all over that.
Everything Becomes Illuminated on a Random Winter Day
It wasn’t until I came across a feature story on Asperger’s Syndrome last winter that the puzzle pieces started to reveal the bigger picture. While I’d heard of Asperger’s, I’d never considered that it might be something that applied to me. Sure I could see myself in the some of the symptoms, but who didn’t? It was easy to explain away the similarities.
I’d told myself that having Asperger’s was similar to being shy–like a really bad case of shyness–which made it easy to write off. I wasn’t that shy was I? I had a job, a child, a husband. I interacted with people when necessary.
I carefully avoided the qualifiers. I had a job that I’d structured around all of my little neuroses. I had a child to whom I’d stopped saying the words “I love you” as soon as she was old enough to talk. I had a husband who was growing increasingly frustrated with my often cold, controlling behavior. I interacted with people when necessary and no more.
There is a certain element of good fortune that allowed me to get away with all of the hacks and workarounds I’d devised to compensate for my deficits. Through a combination of luck and a willingness to take risks that a lot people wouldn’t, I’d managed to create an environment that capitalized on what I could do and masked all of the things I couldn’t do.
Being in school upset the delicate balance I’d worked so hard to cobble together and suddenly it became hard to avoid the qualifiers.
When I read that feature story, I felt like the writer was talking about me. Not about someone like me, about me. I don’t know what made that story different from the others I’d read about Asperger’s (and there had been many–my fascination with AS alone should have been a big red flag that my subconscious was trying to tell me something).
Maybe I was finally ready to see the big picture and I’d assembled enough of the little clusters of puzzle pieces to make that possible. Whatever the cause, the result was a feeling of lightness–like Asperger’s Syndrome was this giant bucket that would hold all of the things about myself that I’d found confusing and painful and shameful and frustrating and hard. Maybe putting those things in the bucket would mean that I wouldn’t have to juggle them anymore.
Intrigued, I did some more reading and it quickly became obvious that Asperger’s is more than a collection of social and communication problems.
There were dozens of little tells that were undeniably me and had nothing to do with being shy or introverted. The way I often talk too loudly or too quietly. The intense interests in unusual topics. My blunt honesty. My heavy dependence on lists and routines. The way I don’t recognize people “out of context.” My discomfort with compliments. The list was long enough for me to finally admit that it might be a good idea to get evaluated.
As hard as that admission was, once it became clear that I have Asperger’s, my first reaction was relief. It explained so much about my life that I’d thought was my fault–for not trying hard enough or being good enough. It wasn’t an excuse but it was a hell of a good explanation.
Armed with that explanation, I’ve immersed myself in learning more about how my brain works and how that impacts my life. As I’ve learned more about Asperger’s and about myself, the initial relief has given way to a rollercoaster of emotions: anger, grief, resentment, fear, surprise, confusion, acceptance, joy, optimism and increasingly a deep, liberating sense of quiet.
So yeah, the diploma is nice, but what came with it–the knowledge that I have Asperger’s Syndrome–is something that’s changed my life.
When I was in elementary school, my younger sister used to watch Sesame Street. At 7 or 8, I felt too grown-up for a show about talking puppets but I secretly loved the “one of these things doesn’t belong here” game.
Once on each show, someone would sing:
One of these things is not like the others, One of these things just doesn’t belong, Can you tell which thing is not like the others By the time I finish my song?