All posts by musingsofanaspie

Acceptance

Autistic as a Reclaimed Word

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Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).

Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.”  Continue reading Autistic as a Reclaimed Word →

Social Skills

Hovering on the Fringe

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My apartment building is testing the alarm system so I’m at the park today, sitting at a picnic table, writing. It’s a beautiful day and the park had been deserted until a few moments ago when a group of kids on a field trip showed up to eat lunch at the picnic tables and play on the nearby playground.

Watching them find seats and settle down to lunch reminds me of how much I dreaded field trips as a kid. The unfamiliarity of the setting. Having to find someone to sit with on the bus. Worrying that I would end up without anyone to hang out with during the inevitable free time we were given as a reward for enduring the educational portion of the outing.

As the kids are finishing up their lunch and breaking into little groups to play football or soccer, I hear a crash. Two boys were off by themselves swinging on the swings and one of them has literally fallen on his face. He gets up, pressing his hand to his mouth, but doesn’t cry or run to the adults for help. Instead he walks off to the side of the playground, away from the group, repeatedly touching his lip and looking at his fingers.

None of the adults notice what’s happened. They’re distracted by the other children, most of whom don’t hesitate to seek out their help or attention.

The other boy on the swings saw his playmate fall and ignored him.

The whole situation feels painfully familiar. The wandering off to play alone. The clumsiness. The embarrassment at getting hurt and the subsequent refusal to seek help. The two boys playing side by side but showing little interest in each other. The invisibility.  Continue reading Hovering on the Fringe →

Acceptance

The Myth of Passing

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Autism is often a hidden disability. There is no universally visible signifier–no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days–our lives–passing for nondisabled.

Or do we?

If you’re autistic, you can probably recognize other members of the tribe fairly easily. Maybe by their stims or their use of AAC, their noise cancelling headphones or by the body language that’s so like your own. We all have our tells.

I know mine. Atypical eye contact and body language are the most obvious. Occasionally my voice gives me away as different–it’s too loud or too mumbly or too flat or simply decides not to exist. If none of those is a tip-off, well, it’s only a matter of time before I have a social communication mishap.

Still, I go through life quite convinced that I’m passing. That my disability is oh so well hidden.  Continue reading The Myth of Passing →

Social Skills

Rules to Live By

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Back when I first started reading about ASD, I came across David Finch’s “Journal of Best Practices.” If you haven’t read it, all you need to know is that after being diagnosed with Asperger’s he started keeping a journal filled with social rules (best practices) that he wanted to remember.

What a great idea, I thought. I should do that!

Yeah. It turns out that I’m not anything like David Finch. He went about cataloging the rules he was learning with a humor and fanaticism that I just don’t have. I wrote down the rules I was learning for approximately . . . two weeks. Then I got distracted by some other bright shiny thing I can’t remember and abandoned the file.

As I was cleaning out my Google docs folder recently, I came across the rules I’d written down. And I have no idea what the point was, because unlike Finch, who actually set about following the rules he’d learned, all I did was write snarky explanations to justify breaking the rules.

That was a year ago, so I thought it might be fun to revisit them. For each, I’ve listed the rule, my response from a year ago and my current response.  Continue reading Rules to Live By →

Diagnosis

Diagnosis Barriers for Autistic Women and Girls

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I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece, Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

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 . . .

Strategies

Asking for Help

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I’ve never been good at asking for help. A few memorable examples to help you understand how nonexistent my “asking for help” skills were as a kid:

When I was five, I fell out of a tree that I was climbing and landed on my back. As you can imagine, I completely knocked the wind out of myself. Not being able to breathe was scary. Falling out of the tree hurt. Did I run to my parents in tears, wanting to be comforted? Nope. I can still remember squatting on the garage floor, crying, trying to catch my breath.

In third grade, during small group reading time, I only brought one tissue with me to the group reading table. I had a nasty cold and quickly used up that tissue plus both shirt cuffs. So I sat there, right next to the teacher, pretending that I didn’t have snot running down my face and that I wasn’t licking it as it reached my mouth. Eventually I guess she couldn’t take it anymore. She went and got some tissues, setting the box in front of me with the admonition that I should ask next time.

In sixth grade, a boy trapped me in the coat closet and kissed me. Not a cute puppy love kind of kiss. More like a gross, smelly, pinned in the corner so hard I couldn’t breathe kind of thing. I spent the rest of the spring avoiding him. He was bigger and stronger and I was afraid of him. I never told an adult. I never asked for help in keeping myself safe from him.

All three of those memories are traumatic in their own way. I remember feeling scared and alone. I don’t remember even thinking about asking for help. For some reason, among all of the options I came up with, none of them involved going to another person to see if they could assist me in solving my problem.

help Continue reading Asking for Help →

Strategies

What I Want

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At the end of July I embarked on a 30-day experiment, the aptly-named “What Do I Want” experiment. My intention was to report back at the end of August with a neat little of summary of what I’d learned.

Well.

Initially, I thought “what do I want?” meant learning to identify my needs and desires. That sounded intimidating. I had little idea where to begin so I began obsessing over decisionmaking. It was concrete and easy to construct rules around. It was also just scratching the surface of what I needed to be doing.

Wading deeper into the experiment, it became more difficult to separate what I want from other big questions of identity. What I am. How I act. How I think. Who I want to be.

I gradually began to realize that being autistic and alexithymic is only part of what makes “what do I want?” so hard to answer. There is a secondary element at work, an old defense mechanism. Wanting something, getting my hopes up, expressing a preference, letting desire creep in–that makes me vulnerable. To deprivation, to loss, to mockery, to pain. Not wanting feels safe. Ultimately, though, all it gets me is preemptive deprivation. There’s a lot of emptiness in not wanting.  Continue reading What I Want →

Acceptance

Focusing on Assets, Building on Strengths

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A few months ago, I watched a lecture by Sam Goldstein about resilience. At the start of his talk he mentioned how in Utah, teachers used to begin IEPs with a discussion of a child’s strengths. They’ve moved away from this in recent years because, as he put it, many teachers felt that listing what a child can already do well is a cursory exercise–in other words, a form of busy work that was taking up time they could be using to list all the things the child can’t do.

Now imagine that child moving through school, trailing this long list of things he can’t do behind him. That’s twelve-plus years of people emphasizing what he’s bad at and what he needs to fix. If he’s lucky, he has at least one cheerleader in his corner, telling him what he’s good at. Because when he sits down to fill out his college applications or goes for his first job interview, no one is going to ask him what his worst subject is or what he can’t do.

Transitioning into adult life requires knowing your assets. Universities and employers are looking for people who know how to put their strengths to work for them. Assets, Goldstein says, insulate us from risk and make us resilient to adversity.

The tension between building on assets versus fixing deficits is at the core of what we face as autistic people living in a neurotypical world. Much of what is framed as interventions and skill building and self-improvement is about being more normal, about “passing” better. But that feels like a Sisyphean task.  Continue reading Focusing on Assets, Building on Strengths →

Communication

Echolalia: That’s What She Said

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When my daughter Jess was a toddler, we had a set of board books about the Disney Babies, which were the “baby” versions of Mickey, Minnie and Donald. Jess loved these books. For months, every night we had to read her the Disney Baby books at bedtime. The opening line of one of the books was

“It’s a bright sunny day. The Disney Babies go out to play.”

How do I remember that? Because to this day, I’ll still occasionally walk outside and say, “It’s a bright sunny day” and if The Scientist is around he’ll reply with some variation of “Mickey and Minnie go out to play.”

Yes, he remembers it wrong but that’s not my point. My point is that this is what delayed echolalia looks like in someone who has functional language skills. More than twenty years later, I associate that story with good feelings. Reading it made Jess happy and as she learned to talk, she would “read” the book to me, reciting the lines that she’d memorized.

It’s a bright sunny day has very specific emotional associations for me; It’s shorthand for feeling good about the day ahead.

What is Echolalia?

Echolalia is a fancy word for the repetition of spoken words. For typical toddlers, it’s a transition period in language development. For autistic people who don’t have functional language skills, it’s a means of communication. For me, it feels like a kind of ‘found speech’, similar to the cast-off pieces of pipe and rusted metal that an artist might use to make a sculpture.  Continue reading Echolalia: That’s What She Said →

Monday Morning Musings

Monday Morning Musings (9/16)

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Giveaway Winner

Congratulations to Tumblr user captain-irrayditation who is the winner of the weighted blanket giveaway.  There were a ton of entries and I wish I was able to give every single person a weighted blanket. Hopefully there will be more giveaways in the not too distant future.

Looking for Input from Women Who are Late/Mis/Un-Diagnosed

I’m writing a pair of articles for the Autism Women’s Network about the high rates of late, missed and misdiagnosis in women on the spectrum. If you’ve experienced any of these and would be willing to be quoted in the article, please take a look at a short questionnaire I’ve put together to collect more information on the topic. There are five questions but feel free to answer even one if it applies to you and you’d like to participate.

Nat is Blogging!

Nat, who is a frequent and prolific commenter here (as Quarries and Corridors), has a new blog. The latest post Understanding the ‘Spectrum’ in Autistic Spectrum is a great take on the different ways that the spectrum concept can be interpreted.  I especially enjoyed the color wheel/slider bar analogy. I guess you’ll have to go read it to see what I’m talking about. 🙂  Continue reading Monday Morning Musings (9/16) →