When I was sick earlier this summer, I had to take 6 weeks off from running–the longest break I’ve taken in years. I was concerned about how soon I could get back into shape, but happily, within two weeks I was back to running 60-70 minutes comfortably.
Runners often talk about building a base. By running a minimum distance every week, your body makes adaptations and the long distances eventually feel less long. When you take time off, it’s easier to get back to running long distances again than it would be for a new runner because you’ve already taught your body some important things about running. Things like: no, we’re not stopping, so quit grumbling and get on with it and yes, you can make it up that hill because you have before.
Each run makes the base a little stronger, a little deeper. Over the years, all those miles create a sort of long-term physical memory. Aerobic conditioning is a big part of being able to run for an hour or two or four, but the act of having done it before is the difference between this will be hard and this is impossible.
“What doesn’t kill you makes you stronger.”
I used to think this meant that surviving difficult things makes you tougher. Which it does. But tougher is not the only way to be stronger.
This innocuous phrase has turned obnoxious for me. Here’s an example of why: I’m reading a book about teaching social skills to children with Asperger’s and I come across a sentence stating that children should be allowed to time to engage in stress-reducing activities, including “self-stimulation in socially appropriate forms.”
What sort of stimming is socially appropriate, you may wonder? The book doesn’t say. Presumably everyone knows? Later in the book I find a clue. There is a list of sample relaxation activities that children can try as a way to de-escalate their stress. One of the activities is “rocking in private.”
Does that mean rocking is socially inappropriate? I assume so, since it’s meant to be done in secret only. How about flapping? Bouncing? Spinning? Playing with a stim toy? Rubbing a surface? Staring at a moving object?
This week’s questions are about acceptance and gender/sexuality/body image. You can answer here or at Survey Monkey, wherever you feel most comfortable. (I’m going to break from pattern and answer anonymously this week, because . . . reasons.)
I’ve created two separate surveys at Survey Monkey:
As always, this is open to anyone, regardless of official diagnosis.
Do your friends and family ask you about your diagnosis? Do you feel supported by them?
Do you ever feel ashamed to be autistic/technically disabled/different? Especially after spending a big chunk of your life as a ‘normal’ person?
Do you all experience a lot of double standards regarding your autism, and how do you deal with this? For instance, it annoys me so much that an NT person can move their hands around, fiddle with clothing etc, but when I do it, it’s stimming and therefore A Bad Thing in the eyes of others.
If you could be neurotypical, would you want to be?
How often do you hear someone use autistic as a pejorative?
Before you realised you were autistic did you ever understand yourself as being somehow not human or not from your culture of birth? (e.g. an alien from the wrong planet or born into the wrong country, century or species etc)
How do you relate to gender? What is your understanding of the word/concept?
Has there been a point in your life when you felt that you wanted to be, or were meant to be, a gender different to the one you were raised as? (If so, why do you think this was, how old were you, how long did this last?)
Do you currently believe in or follow gender roles and stereotypes? (for example, roles/rules about how you’re meant to dress and present yourself, what interests you’re meant to have, how assertive/emotional/nurturing/etc you’re supposed to be, what role you’re supposed to take in personal and professional relationships, etc)
If you are some variety of transgender or answered that you’re gender nonconformist in some way, do you think that this is in any way related to your autistic traits? Do you think you ‘do gender’ or ‘do transgender’ differently to other people because you’re autistic?
Is your sexuality, romantic orientation or preferred relationship structure different from our cultural norms in some way? If so how does this differ and do you think this is related to your being autistic?
Have you ever had any difficulties with your self image, if so how did these manifest? (such as physical/bodily gender dysphoria, body dysmorphia, eating disorders)
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.
This post is a part of today’s “Autistic people are . . .” flashblog. You may have seen the news this week that Google has promised to eliminate the problematic “Autistic people should” autocompletes in response to last week’s flashblog. They’ve said it will take time to engineer, so while the hateful autocompletes are still appearing, hopefully they’ll soon be gone.
We can make a difference by speaking up.
Autistic people are everywhere.
We sit next to you at school and on the bus. We give your dog his rabies shot, teach your kids, make your latte and sweep the floor at your grocery store. We pass you on the sidewalk and stand beside you on the subway. We eat in the same restaurants, shop in the same stores, go to the same gyms that you do.
We are mothers and fathers, husbands, wives and partners. We are sons and daughters, sisters and brothers, aunts, uncles and grandparents.
We are everywhere, all around you.
If you don’t see us, it’s because we’ve mastered the art of hiding in plain sight.
We don’t come neatly labeled. Many of us don’t “look” autistic. You can interact with us and not realize you’ve talked to, worked with, studied with, played with, cursed out, fallen in love with, or are related to an autistic person.
We often don’t share our neurological status unless we feel that we absolutely have too, and even then sometimes we don’t.
There is no payoff for calling attention to our differences. There is no reward for being openly autistic. The risks are real.
Many of us remain quietly, even silently, autistic.
We are everywhere, sitting beside you, walking past you, interacting with you. Do you see us?
This post is part of today’s “Autistic People Should” flash blog where Autistic bloggers are writing about positive things that Autistic people should do. Why? Because if you type “Autistic people should” into either Google or Bing’s search engine query box, the autocomplete results–the most popular searches starting with those words–are disturbing and upsetting, especially if you’re Autistic or love someone who is.
Trigger Warning: I’ve posted a screenshot of the text from Google’s autocomplete at the end of this post and as I said above, it may be very upsetting if you are Autistic or care for someone who is.
Autistic people should: question everything.
When we’re given an autism spectrum diagnosis, we’ve also given a model of what it means to be autistic.
Question the model.
What does your word cloud for autism look like?
Question the assumptions.
Is there a right way to play?
Question the research.
How do they know?
Who paid for it?
Question the stereotypes.
Question the experts.
How do they know?
Are they sure?
What if they’re wrong?
Question the language.
Disorder, deficit, disability, difference?
Cured, recovered, coping, adapting, passing?
Label, slur, identity?
Person with autism, autistic, Autistic, aspie, autie?
Locked in, trapped, uncommunicative, nonverbal, nonspeaking, unvoiced?
Question the hype.
Burden to society?
Question the fundamental fabric of humanity.
What is empathy?
What is love?
What is communication?
Question what you read, what you hear, what you see, what you are told.
Working my way through The Complete Guide to Asperger’s Syndrome, I found myself revisiting moments in my life that had been confusing, painful or traumatic. Suddenly, so much of my life made sense in the context of aspie traits.
Difficulty making friends? Impaired social communication skills
Clumsy? Motor planning deficit
Poor handwriting? Problems with fine motor coordination
Massive stamp/coin/doll/baseball card/Lego collections? Abnormally intense interests
Not a hugger? Tactile defensiveness
The odd reactions I get from people? Poor eye contact, flat affect, inability to read body language
and on and on and on . . .
When I got to Attwood’s description of the little aspie girl lining up her Barbie dolls and their clothes instead of playing with them, I literally shouted with joy. There are other people like me! I’m not defective. I’m not randomly weird. I’m an aspie. One of many.
I’d found my tribe and it was good.
This process of giving meaning to experiences is sometimes known as sensemaking or creating a sensemaking narrative. It happens when our current way of understanding ourselves or our situation is inadequate. Without the Asperger’s piece of the puzzle, I was forced to cobble together incomplete explanations for my developmental history and my life experiences.
Once I had a basic understanding of Asperger’s, I could apply that knowledge to “make sense of” my life in a new way.
Sensemaking has a few key steps, most of which I found happening naturally as I processed my newfound identity.
The Sensemaking Process
Shift in identity – identification as aspie/autistic
Retrospection – looking back at key life events in the context of this new identity
Building narrative accounts – retelling the story of your life in light of AS/autism
Sharing your narratives – strengthening and preserving your stories by sharing them with others
Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes
Each person’s sensemaking narrative is unique. Mine takes several forms: thought, speech and especially writing. Right now, my blog–including your comments and my replies–is the cornerstone of my sensemaking narrative.
As you learn more about AS/autism, does it help you better understand difficult or confusing life events?
Can you retell those events in a new way now?
When you’re ready, share your new understanding with trusted people in your life.
Sharing can take many forms: oral, written, visual or mixed media. It can be factual, fictional, derivative or a combination. This is your story. Tell it your way.
Don’t be afraid to revise and refine your story as your knowledge expands or your perception changes.
Something is happening deep inside me, something unexpected and strange and fantastic. I’m not sure if I can describe in any sort of way that will make sense, but here goes.
Last night I had a dream. I was in a railway station, crossing the platform to the exit, when I came upon a woman and her pet goose. As I accidentally stepped between the woman and the goose, the goose nipped at my pants. Surprised, I yelped and flapped my hands.
Here’s the strange part: I haven’t flapped my hands since I was very young. From watching old home movies, I know that I flapped as a toddler and preschooler. I’m not sure when I lost my flap but my best guess is very early in elementary school.
Here’s the unexpected part: I’ve never consciously stimmed in a dream. I didn’t realize the lack of stimming in my dreams until I woke up this morning and was overpowered by the memory of my dream flapping.
Which brings me to the fantastic part: In the dream, in that moment when I flapped, I was flooded with the sensation of being connected to my original self.
I don’t think there are words to describe that last part properly. It felt like a wormhole to the past opened up and for the briefest moment I was able to experience my self as a very young child. Not imagine or remember, but actually experience it.
It was unlike anything I have ever felt, imagined, or experienced as an adult. I can’t even say that I clearly remembering feeling that way as a child.
Perhaps it has nothing to do with childhood. Perhaps the concept of original self transcends age and hinges instead on access.
I don’t know and I don’t really care. I have to give it a name so I can tell you about it, but in my mind, it doesn’t need a name. It is a state of being, as clear as any I’ve ever experienced.
It felt like untainted joy and freedom. It felt infinite. It felt like I was connected to the absolute most original version of my existence.
I can’t explain how I know that, but I do.
And it was so strongly tied to that flap–that startled, instinctive response provoked by the angry little dream goose.
But it was a dream, right? Dreams trick us into thinking all sorts of strange things.
But dreams also tap into our subconscious in ways that we can’t access when our waking defenses are active.
All morning I’ve been thinking about why this happened. Why now?
What I’d like to think is this: I’m slowly rediscovering my original self.
Part of that rediscovery is tuning in to my urge to stim and setting it free. Too many years of reflexively quieting my body, of squeezing my stims down to their least noticeable versions, has disconnected me from myself in an essential way.
Slowly, slowly, the stims of my childhood are coming back. Last night as I was waiting for the pasta to cook, I found myself twirling in the kitchen and instead of stopping, I let myself enjoy it. I kicked out my foot and make a full spin to the right, then kicked out my other foot and twirled to the left. I did it again and again and soon I found myself laughing out loud.
Twirling around in the kitchen feels good. It feels right.
As I unlearn my habit of minimizing my stims, I feel like I’m reintegrating parts of myself that have been disconnected for a very long time.
And I find myself wondering if acceptance comes not from learning to accept but from unlearning a lifetime of rejecting.
How many books on Asperger’s Syndrome or Autism have you read that begin with Chapter 1: What is Asperger’s Syndrome or Chapter 1: What is Autism? If you or someone you love is on the spectrum, then the answer is probably “a lot.”
The authors’ desire to start at the beginning is commendable but honestly I skip over these introductory chapters. I have the DSM diagnostic criteria memorized and I’m on intimate terms with the signs and symptoms of Asperger’s Syndrome.
Perhaps a more useful opening chapter for aspies would be: What is Neurotypical?
Neurotypical is a term that’s thrown around in the autism community like everyone instinctively knows what it means. If this is a new word for you (like it was for me not so long ago), in the ASD community, neurotypical is often used to refer to people who are not on the autism spectrum. It’s a mash-up of the words “neurologically typical” and is often shortened to NT.
A more correct word for someone who is not autistic is allistic. Technically, you can be non-neurotypical (neuroatypical) even if you aren’t autistic. Having clarified that up front, I’m going to go with the popular usage here.
How Can You Tell if Someone is Neurotypical?
So who are these NTs and how can you tell if someone in your family is neurotypical?
For starters, NTs make up about 99% of the population, so they’re everywhere. It’s very likely that you know neurotypicals and you probably have at least one NT in your family. While there is no widely accepted diagnostic test, NTs are fairly easy to spot once you know what to look for.
Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.
Another common sign that someone is an NT? Touching. NTs enjoy all sorts of physical contact and often use touch to greet friends, family and even casual acquaintances. While it’s hard to fathom why your real estate agent or hairdresser feels the need to send you off with a hug, try not to be judgmental while fending them off. NTs are simply wired differently.
Sometimes NT behavior can be frustrating. For example, you may notice that NTs have a tendency to say something other than what they mean. If you get a new haircut and you’re not sure how it looks on you, don’t bother asking an NT. Most will tell you it looks great, even if you look like this:
Why? Because when a neurotypical woman asks her friend “how do you like my new haircut?” she isn’t looking for her friend’s opinion, she’s looking for validation. When her friend says, “I love it” she may mean I love your hair, but what she’s really saying is I love you and value you as a person.
So when your NT friend says “how do you like my new haircut?” and you, being your aspie self, reply, “It’s a little short in the back but I like it”, your NT friend hears I secretly hate you and think you’re ugly.
Confusing, I know.
And good luck getting an opinion out of an NT when you really need one. It may help to preface your question by explicitly stating that you’re seeking an actual, honest-to-God opinion but, even then, the NT’s dogged adherence to socially appropriate behavior may inhibit their ability to say what they’re really thinking. Try to remember that NTs were born this way and their natural sensitivity to what others are thinking and feeling often makes it hard for them to be completely honest.
Of course all NTs are different, much like all aspies are different, so these are just some general guidelines for recognizing the NTs in your life.
If you’re neurotypical, how did reading this make you feel? Offended? Stereotyped? Did you enjoy the patronizing tone? How about the sweeping generalizations?
What if it went on to talk about how some NTs are so socially adept that they get promoted into positions they don’t have the knowledge or skills for? What if it listed good careers for NTs (sales, management, counseling) and authoritatively added that you shouldn’t bother considering engineering or computer science because you’ll probably fail if you do?
Perhaps you’d like to read that your neurotype–the way you were born–will cause significant stress to your family or prevent you from having meaningful relationships? How about some unsubstantiated data on the astronomically high divorce rate among people of your neurotype or the alleged rarity of someone like you ever becoming a parent, let alone a good one?
Yes, We Can Read
My search for books about Asperger’s syndrome has left me surprised at how much there is about Asperger’s that isn’t directed at people who have Asperger’s. The majority of the books that I’ve read are addressed to parents, educators, caregivers and counselors. Which is great. There need to be resources for all of these people.
But there also need to be more good comprehensive materials that are written for aspies, not just about us. We can read. We’re eager to learn more about how our brains work. Why is it so hard to find authors who recognize that?
I was in the cereal aisle in Target, waiting for The Scientist to decide on his cereal purchase, when I overheard this exchange between a mother and her preteen son:
Mother: “James, come and let’s pick out some cereal.”
James (appears from around the corner): “But I haven’t finished looking at all the pasta. I looked at the pasta on the right but I didn’t look at the pasta on the left.”
Mother: “We need to pick out your cereal.”
James (sounding panicked, voice rapidly rising into hysteria): “But I need to look at all the pasta! I haven’t looked at the pasta on the left. I need–“
Mother: “Okay, you can finish looking at the pasta if you promise to come right back here when you’re done and pick out your cereal.”
James: “I promise.” (dashes off around the corner then returns a minute later)
Mother: “Are you done?”
James: (looking happy) “Uh-huh.”
If you’re autistic or you have an autistic child, I bet you know why this conversation made me smile.
James’s mother didn’t say, “You don’t need to look at all the pasta.”
She didn’t say, “That’s ridiculous.”
Or, “You can look at the pasta later (or next time).”
Or, “Stop whining or we’re leaving.”
Or, “Grow up and act your age.” (James was around 10 or 11, I think.)
Or, “Get over here and pick out a box of cereal or I’m taking away your video games for the rest of the day.”
Though she may not understand why James needs to look at all of the pasta when he visits Target, she recognized that preventing him from doing it would result in a meltdown in aisle 13.
And look at the results: The situation was rapidly de-escalated. James was happy. He came back and picked out his cereal as promised, without any prompting. His mother had to wait for him, but an extra minute standing in the cereal aisle beats the hell out of trying to calm a kid having a meltdown in the cereal aisle.
Meet Us Where We Are
There is a lot of talk about how autistic kids (and adults) need to learn flexibility. We’re too rigid, have too many nonfunctional routines. There are elaborate systems for teaching flexible thinking (which is important, I get that). But maybe non-autistic people need to be more flexible, too.
For kids like James, Target is stressful. The noise, the lights, the people, the smells–any or all of these can be overwhelming to autistic individuals. (And yes, based on what I saw I’m assuming–perhaps wrongly, but I doubt it–that he’s on the spectrum.)
If looking at the pasta makes a kid feel better, is that a big deal?
For some parents it might be. Let’s face it–a kid who needs to not only look at the pasta, but to be sure he’s looked at all of it? A little weird. But so what? We all have our coping mechanisms and James has found a way to cope with the stress of Target.
And his mother, bless her, she seemed to get this. She doesn’t look concerned about people judging her for letting her son “have his way.” She doesn’t belittle or shame him for what is, in his mind, a very real need. She doesn’t complain that he’s wasting their time or being uncooperative.
Her response left me wondering how long it took them to get to this point. Because not only did James interrupt his study of the pasta aisle to come when she called him, he returned the second time and picked out his cereal without being prompted. For a kid with such an intense need to study the pasta aisle, this is huge. Huge.
In this one small exchange, he’s learning how to negotiate, how to compromise, how to satisfy his needs while being conscious of his responsibilities, how to keep a promise, how to regulate anxiety and/or sensory overload using coping mechanisms.
Yes, autistics can be rigid. Yes, we have some odd routines or habits. Sometimes this has to be addressed. If James needed to spend an hour studying the pasta aisle, then yeah, big problem.
But a few minutes in the pasta aisle, accepting that the pasta on the left is important, even critical, to this particular kid–that doesn’t have to be a problem at all.
When you have an autistic family member or friend, you’re going to run into situations that you find hard to understand. There will be times when we’re not where you think we should be or where you wish we were.
When this happens, try practicing a little flexibility. Meet us where we are. You might be surprised at the results.