I have more than one kind of silence. There is the very bad kind, the crushing kind. That one I could do without.
There is also the heavy silence. I can force the words to come out, but each one is an effort, like lobbing boulders out of a pit. They land in the dirt around me, scattered, muffled, obscured by clouds of dust. Lobbing boulders is hard work.
There is the accidental silence. The words fly away, leaving gestures, grunts, nothing at all. “Didn’t you see my eyes get wide?” I ask The Scientist when he wonders why I didn’t warn him about the wall he was about to back into.
There is the silence of too much. Too much input. Too much to process. Too many people, things, noises, questions, answers, objects, movement. I feel myself fading into the scenery, disappearing. I become silence itself. Continue reading Silence II: Variation→
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→
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→
Saying “no” is hard. Often when I say no, I feel like I’m disappointing the other person, like I’ve somehow failed.
This probably sounds funny coming from someone who not too long ago wrote about her “no reflex” but there are two categories of no for me. There’s the reactive no–the one that just pops out because I can’t deal with change or spontaneity. I might feel momentarily bad but don’t get all twisted up inside over it.
The other no–the one that hides and cowers and wakes up the butterflies in my stomach with its nervous pacing–is the no that makes me feel like I’m failing. The hard no is often a result of tension between what the other person wants and what I can feel like I can reasonably do. It’s often tied in with adult social obligations, the sort encountered by parents, spouses, adult children, employees: the neighborhood book club, the PTA committee, the office holiday party, the class research project.
When people ask others to join, volunteer, lead or otherwise participate in something, they do it with such a hopeful, expectant tone of voice. The implication is “how can you refuse this excellent thing that we’re all counting on you to be a part of?” And so often, that excellent thing just feels like a burden to me.
Saying no, however, is going to lead people to make assumptions. I’m not pulling my weight. I’m standoffish. We’re not as close as they assumed. I think I’m better than other people. I just don’t care.
All of the other moms are on a committee. All of the other parents have coached a season of rec sports. All of the other wives will be there. All of the other cousins are going to the wedding. All of the other students in the department are attending graduation. All of the other neighbors are baking for the fundraiser.
Of course not literally all of the other ______ are doing anything, but that’s what the person asking will imply. Everyone else is doing it, what aren’t you? Or worse, not enough people are doing it, I’m counting on you to help me out.
This is peer pressure at its most insidious. The hints that doing this thing makes you normal or a better person or not a bad person are powerful, especially when you’ve been raised and socialized to feel like fitting in and being normal are a primary goal.
And here is where we come to the crux of the issue. Autistic children are often grow up with a strong desire to fit in, to be liked, to be normal and/or to not get into trouble. We aren’t necessarily taught that we have the right to decline activities that uncomfortable or that we can sometimes put our needs first.
Learning to Say No
No comes from different places for different people. Strong boundaries. Good social skills. Explicit instruction in saying no as a child. Good self-esteem. A general orneriness.
If no doesn’t come naturally or has been socialized out of us, we can still learn to say no. This is where scripts come in handy. Not only do scripts give us the words that we might find unnatural, they prevent us from accidentally saying yes when we mean no.
Social communication is fraught with code words and unspoken communication. If your no is too soft, it can be misconstrued as a yes. For example, if you mean “no” don’t say “I don’t think so” or “I shouldn’t.” This can be interpreted by the other person as an open invitation to persuasion, negotiation or further discussion. You may find yourself feeling bullied into a “yes” when you already thought you’d said no.
If you mean no, unless you clearly and unambiguously say “no” the other person may think you’re being polite or coy.
But how to do that?
Saying No 101
I’ve always secretly wished there were social skills classes for adults. Then, recently, I realized there is something very similar: etiquette. On a whim, I’d checked Emily Post’s aptly titled Etiquette out of the library. And guess what? It’s loaded with not just advice but scripts. Lots and lots of them.
Emily Post and the people who now edit her books have spent a great deal of time figuring out the polite thing to say in just about every imaginable situation. Did you know that saying no can be as simple as:
“Would you like to come with us to lunch?”
“No, but thank you for inviting me.”
That’s right, you can simply say “No, but thank you for [asking, inviting, including, thinking of] me.” No further explanation necessary! This was a revelation to me because I always thought I needed to provide an excuse when declining an invitation.
You can, of course provide an (honest) excuse if you have one:
“No, I have plans for this weekend, but maybe next time.”
“No, I can’t make it this time. Work/school is too hectic.”
When providing an excuse, be careful not to put off for the future something you have no intention of ever doing. Saying, “Work is really busy right now” opens the door to getting the same request next week. If the request is something you don’t want to do, remove the invitation for a repeat inquiry by saying, “My schedule is full right now. If that changes, I’ll let you know.
And for those of us with food sensitivities and allergies, here are a couple of simple, polite phrases for declining food offered by a host(ess):
For foods you don’t like, a simple “no, thank you” is fine.
For allergies, intolerances or diet restrictions, you can say, “________ is off limits for me, but everything else is wonderful.“
Polite. Straightforward. Inoffensive to your host’s cooking. Again, no need to offer a lengthy explanation or get into why you couldn’t possibly put a single piece of creamed spinach in your mouth without dying of sensory overload.
Beware of Traps
Not everyone knows how to politely take no for answer. People often try to guilt or bully others into saying yes, even after they’ve said no. Don’t fall for mind games:
Just because someone compliments you, you don’t have to say yes to the request that follows. For example, Mary says, “You’re the best web designer/babysitter/cake baker in the world. I know this is last minute, but could you [do some task that you don’t have time or energy for]?” Instead of feeling flattered/guilted into saying yes, you can say, “Thank you, but I don’t have time right now.” Politely acknowledge the compliment, then follow with a firm unapologetic no.
Peer pressure doesn’t end in high school. If someone prefaces a request with “Everyone is . . .” or “You’ve got to . . . ” beware. Don’t cave in to the bullying–instead politely decline with a simple, “I can’t right now.” Repeat as necessary.
Don’t allow others to trick you into doing something by making you feel sorry for them. A simple “I’m sorry you’re feeling overwhelmed, but I have my own deadlines to meet” is sufficient for turning down an unreasonable or inappropriate request.
Even well meaning people sometimes have trouble taking no for an answer, as Mados vividly illustrated in her recent post “Parties & Irrelevant Pity“. Saying no can be a complex social exchange and one that requires a lot of practice to do well. Scripts like the ones Emily Post suggests are a good starting place, especially for those of us who struggle with how to phrase things as well as how to maintain boundaries.
It’s rare these days that the thread of comments on a post isn’t two or three or five times as long as the post itself. This makes me happy. Happy that so many of you feel comfortable sharing your thoughts here. Happy that each post becomes a jumping off point for discussions that wind in all sorts of interesting directions. Happy that we can learn from each other.
I enjoy reading your comments–and I do read every single one of them. I especially enjoy the longer ones where a subject catches someone’s interest and they go off on an enthusiastic tangent. This happens a lot.
You know what else happens a lot? Apologizing. No sooner does someone finish writing their long detailed informative comment than they’re apologizing for it. A recent exchange with Ischemgeek made me realize how often we apologize for simply talking. I do it in the comments too and this is my blog!
And I’ve lost count of the number of times I’ve started to write a comment on someone else’s blog, then deleted it for fear that it was too long or irrelevant. I bail on comments more often than I finish them. The ones I do leave, I often end up wishing I’d said less or came across sounding more chatty and less. . . . fact-y.
No one likes a smarty-pants right? I learned that lesson early and well.
Does Infodumping Have a Place?
We’re autistic–we have deep knowledge of certain subjects, we’re passionate about our knowledge and we want to share. This should be a good thing, but so often it’s something that we’re made to feel bad about and have been since childhood.
In that exchange I mentioned above, Ischemgeek said:
I like hearing others monologue at me (love learning & reading stuff), but I’m used to having to apologize for it when I do it, yeah. When I was a kid, I’d be told I was being domineering or rude and then made to apologize… which didn’t have the effect of teaching me not to monologue because I’m usually 5-10 minutes in before I realize I’ve been talking a while, it just taught me to apologize when I realize I’ve monologued.
Monologuing or infodumping is part of our nature. I understand why it’s discouraged in children. Monopolizing the conversation is rude. So is talking about a subject the other person isn’t interested in.
If you’re told enough times that talking about what interests you is rude, it’s easy to start thinking that talking itself is rude. Because what would we talk about, if not what interests us? We’re black and white thinkers–we come to conclusions like this as a matter of course, especially when we’re younger.
But like Ischemgeek points out, that doesn’t necessarily teach us not to infodump. It teaches us to reflexively apologize every time we say more than three sentences.
Is that necessary as adults? What if the other person expresses interest in the subject? Like Ischemgeek, I will happily listen to someone infodump on a wide range of subjects. Not only that, I’ll often prolong their monologuing by asking lots of questions. I love learning new things and am fascinated by details. When someone has an expert level of knowledge on a subject, their enthusiasm for the subject is contagious. At least I think it is.
I’ve learned about fascinating subjects I never would have pursued on my own thanks to someone else’s passion for them. Ancient Egypt. Aboriginal camp dogs. Unknown unknowns. Primate social behavior. Poaching in Africa. The epidemiology of cancer in Hispanic populations in the US. Given enough time to think about it, I could fill a page at least with topics of memorable conversations like those.
The Scientist and I are both monologuers at times. We indulge each others’ topics of interest. I know far more than the average person about a whole bunch of subjects thanks to his passionate interest in them and the same is true of him. That’s not to say all or even most of our conversations are one-sided monologues. Simply that we both enjoy learning new things and not every conversation we have has to be a typical back and forth, each person talking for equal amounts of time type of conversation.
Making Our Own Rules
I think, because we’re adults and because we can, we should put a moratorium on apologizing for sharing information that we find interesting. Starting here, in the comments. The asynchronous nature of blog comments makes this a low risk place to infodump. We can each choose to read or skip over comments as we see fit. No one has to read what you wrote (well, except probably me).
If you have something to say that you think is interesting and adds to the conversation, say it. Don’t apologize for being passionate about what interests you or for sharing it.
There is a moment I dread in conversations with strangers: the moment when that stranger–that person I’ve been talking to for a minute or two or five–decides I’m “a little slow.”
It doesn’t happen with every stranger, but it happens often enough that I can pinpoint the moment a conversation turns. To start, we’re both on our best interacting-with-a-stranger behavior, a bit wary, a bit too friendly, whatever. Then I slip. I miss some key bit of information, ask the other person to repeat something one too many times, stutter, backtrack, repeat myself, interrupt again, lose the thread of the conversation, take a joke literally, perseverate. There are a lot of ways it could play out.
The response–the one that makes my skin heat up and my heart race and the blood in my ears pound–is subtle but sudden.
A note of condescension slips into the other person’s voice. I may suck at reading body language, but I’m pretty good at gauging voice tone. Maybe they start speaking more slowly or repeating themselves. They downgrade their vocabulary to smaller words. They repeatedly ask questions like, “are you following me?” and “does that make sense?” They get pedantic, having decided I require some sort of instruction.
In short, they’ve decided I’m a little slow on the uptake.
At the first sign of this shift, I get a sick feeling in the pit of my stomach. I’ve been categorized by this person who knows next to nothing about me and is forming an opinion based on my spotty verbal skills, tallying them up with my inconsistent eye contact and my incongruent body language and all the other ways my body says “not like you.”
Am I Slow?
Literally speaking, I guess I am. My verbal processing–both receptive and expressive–is impaired to the point that I often need more time than the average person to understand or respond to someone.
I have all sorts of communication glitches. I struggle with verbal instructions. If there’s background noise or other distractions, my auditory processing lags to the point that it can take a few seconds to process speech from noise into words. My verbal responses default to scripts–sometimes not even the right scripts–or become minimal when the conversation takes an unexpected turn, moves too fast or is too unstructured.
There is a significant disconnect between my verbal skills and my intelligence or literacy or whatever you want to call it.
In short, I look better on paper. If I was a shelter pup, there would be a note in my file that said, “Does not show well.”
Generally, this isn’t a problem for me. I’ve engineered my work life so that I first “meet” people via email or some other text-based correspondence. By the time we talk on the phone or meet in person, the other person has (hopefully) formed an opinion of me that will withstand some verbal glitching.
I’ve gravitated toward text-based medium in general, spending my days working primarily with the written word. Still, I have to do things like go to the doctor, contact the super in my building for repairs, and navigate the university records office to correct my transcript–all situations in which I’ve encountered the dreaded conversation shift. Situations in which I went from feeling like I was on equal footing with another adult to feeling patronized, belittled or ignored.
And here’s the thing: I am an adult. Whether I speak eloquently and fluently or not, I’m still an adult. My ability to communicate verbally has no impact on my ability to understand the way a ground fault interrupter works or what the risk factors for breast cancer are or how to read my college transcript. I don’t need to have these things explained to me like I’m a child.
What do I need, you might be thinking? My wishlist:
Treat me like a competent adult.
Be patient. I might need a little extra time to compose my answer or to process what you’ve said.
If I ask for clarification, try explaining in a different way. If I didn’t understand the way you explained the first time, an exact repetition probably won’t help.
Assume that if I don’t understand something, I’ll say so.
Don’t rely on my body language or other typical cues for feedback about whether I understand what you’re saying. Unless you’re also autistic or know me very well, you probably can’t read my body language any better than I can read yours.
Give me time to write down key information if I need to.
Don’t oversimplify your language or speak unusually slowly or loudly.
If you’re giving me verbal instructions, break them down into specific steps and explain one step at a time.
If I keep repeating a question or statement, I need a stronger acknowledgement that you’ve heard and understood me.
Treat me like a competent adult.
Some of the stuff on that list comes under the heading of accommodations. These are things I have to ask for because they are outside the norm and others may not know that I find them helpful.
But some of it–like #1 and #7–those should be the bare minimum we can expect when interacting with other adults, regardless of how typically or atypically we present.
I started this post thinking it would be about dyspraxia and Asperger’s. Dyspraxia, difficulty with fine and gross motor coordination, is often diagnosed alongside ASD. Adult symptoms of dyspraxia overlap with adult ASD traits to the point that even the experts have trouble separating the two. In fact, autistic individuals are sometimes misdiagnosed as dyspraxic.
If the experts are confused, I’m certainly not going to untangle the topic in a single blog post, so I decided to set that idea aside and write about general movement difficulties. Aspies are a notoriously clumsy lot. I’m forever tripping over stuff, bumping into stuff, dropping stuff, breaking stuff.
Seriously, if you like your stuff, keep me away from it.
I’ve broken an entire kitchen’s worth of glassware in my lifetime. In the first month of owning a new blender, I broke the glass pitcher not once, but twice. You’d think I would have learned the first time not to put it down so forcefully on the counter. After the second one shattered, I downgraded to a plastic pitcher because a blender is not worth that kind of trauma.
Gross and Fine Motor Impairment is Nearly Universal in ASD
The theories about why aspies are so uncoordinated are many: motor planning deficit, motor development delay, motor timing impairment, problems with initiation or inhibition, imitation and praxis impairments, deficient postural control, under reliance on feedforward control. There are also a handful of other conditions that muddy the waters further: apraxia, ataxia, hypotonia, dysgraphia, dyscalculia, dyskinesia . . .
You see where this is going, right? It would be easy to write a book on the subject and still not cover everything. Just defining all of those things would require a whole series of blog posts.
There are a few things that most of the experts agree on:
Some level of gross and fine motor impairment is nearly universal in people on the spectrum.
Motor impairments may improve somewhat with age, but generally persist into adulthood.
With more study, motor development delays could be a reliable indicator of the presence of ASD in very young children.
It is unclear whether dyspraxia is a separate diagnosis or the features of dyspraxia overlap with features of ASD.
The cause of motor development delay in autism is unknown.
It’s interesting that once again we have something (like insomnia) that occurs in the majority of autistic people but is not part of the diagnostic criteria. Autistic children routinely receive occupational therapy to improve their fine motor coordination, balance and posture; motor impairment is nearly universal. So why isn’t fine/gross motor skill impairment officially one of the diagnostic criteria?
What if Motor Impairments are Connected to More Than Clumsiness?
Some of the research I read about motor skill impairment in ASD is more radical than what you’ll find in the popular literature. Consider these two possibilities:
1. Delayed or nonexistent speech may be the result of a movement disorder. Rather than assuming that nonspeaking autistic individuals don’t have the cognitive development necessary for communication, some researchers believe that there is a physical impediment to performing the necessary movements with the mouth to produce speech.
This isn’t a blanket explanation for all situations in which autistic people are nonspeaking, but it does offer an alternative way of thinking about the relationship between speech and communication. Once we separate the two, thinking of speech in the physical rather than purely cognitive realm, we’re less likely to assume that because a person doesn’t communicate via speech they are incapable of communication.
It also presents another way of looking at the phenomenon of “selective mutism” (temporary loss of speech). Often a temporary loss of speech in autistic individuals is related to a period of high stress. When I’m very stressed, my speech suffers and I can become temporarily mute or significantly impaired.
I also know that during periods of intense stress, I’m more likely to trip and fall while running or to drop things. There is a definite deterioration in my motor coordination under stress. It’s not hard to imagine this extending to the motor aspects of speech.
2. Social communication issues may arise from early difficulties with motor skills. Before children speak, they rely on nonverbal communication for play. If autistic youngsters aren’t modeling the expected nonverbal cues due to motor impairments, they will also fail to receive appropriate nonverbal responses from their peers.
This failure to communicate physically may mean that autistic children have fewer and poorer quality nonverbal interactions with peers and therefore struggle to learn social communication at the most basic levels. As they grow older and nonverbal communication grows more complex, they fall further and further behind.
Facial expressions, hand gestures, posture and body positioning–all physical movements–are the primary tools of nonverbal interaction. If autistic individuals have difficulties with initiating, performing, mirroring, inhibiting or planning physical movement, it stands to reason that this would include difficulties with the physical movements inherent in nonverbal communication.
Social Communication Difficulties in a New Light
It’s interesting to think about social communication and speech difficulties as rooted in impaired motor skills. What if we struggle with speech and nonverbal social communication for the same reason that we struggle with catching a ball or learning to ride a bike?
Is it possible that a group of seemingly disconnected autistic traits have a common root in our motor skills impairment?
I’ve mentioned my “missing word problem” here before. You may have noticed it in reading the blog or my comment replies–my tendency to skip over a small but necessary word when I write. This is more than a simple problem with typos, which I can easily catch and fix when proofreading.
The mystery of the missing words had proved intractable enough that I’d given up on solving it.
Until now, that is! I’m reading “The Mind’s Eye” by Oliver Sacks and right there in Chapter 2 is a potential answer: aphasia.
Aphasia is a disruption in expressive or receptive language. It can be as severe as a complete loss of understanding of language, including the inability to speak or think in words. (Aphasia usually affects all forms of language, not just speech.) “Global aphasia” often results from a brain tumor, stroke, traumatic brain injury or degenerative brain disease.
However, milder forms of aphasia are characterized by:
difficulty in finding words (especially nouns, in particular proper nouns)
a tendency to use an incorrect word without a change in sentence structure
In discussing notable case histories of aphasia, Sacks mentions the English writer Samuel Johnson, who experienced aphasia after a stroke at the age of 73. While Johnson eventually regained the ability to speak, he “made uncharacteristic mistakes, sometimes omitting a word or writing the wrong word” in his writing and correspondence.
Adding Up the Evidence
I omit words when I write–more often than the average person it seems–at a rate of about one missing word per one to three hundred words, more if I’m tired (yes, I’ve started keeping track).
The missing words are small but important, like not, an and the. I need to proofread multiple times to catch them, often in an alternative format, because my brain likes to help me out by pretending the missing word exists and skimming right over the omission.
I sometimes use the wrong word without noticing. In writing, it tends to be a word that is close in spelling or sound, though not necessarily in meaning, like bring instead of brain. When speaking, my substitutions are more entertaining. For example, last night The Scientist was using a kitchen towel to clean up a mess.
“Put that in the dishwasher when you’re done,” I suggested helpfully.
He looked at the towel and frowned. “You mean the washing machine.”
Right. That’s exactly what I meant. And what I thought I’d said. This happens a few times a week and I rarely notice that I’ve done it until someone points it out. It’s more common when I’m fatigued or in a setting with a lot of distractions.
I have trouble with retrieving words, especially names of people and things:
“I’ll recycle the, the . . .” I’m staring at the newspaper and pointing at the newspaper and I cannot for the life of me come up with the word for it. All I have is a blank–a tangible, almost physical hole in my mind where newspaper should be. “I’ll recycle that that . . . thing after I finish reading it. $%&*! WHY ARE THERE SO MANY DIFFERENT WORDS FOR THINGS?!”
I’d been attributing the increasing frequency of gaps in word retrieval to getting older. It’s frustrating, especially when I’m trying to find the right word for a written piece and it refuses to surface. Sometimes it will be hours before I can come up with the word I’m looking for; fortunately I’ve learned how to set the problem to process in the background. This often results in me randomly exclaiming things like “dichotomy!” at inappropriate times.
Is Aphasia the Answer?
If this is indeed mild aphasia, then I finally have an explanation for some minor but annoying language difficulties. Perhaps my auditory processing delay is a form of receptive aphasia?
Then again, this could all be tied to Asperger’s. I’ve heard others on the spectrum mention difficulty with finding words at times. Our issues with processing spoken language are widely known. The missing word problem, though? Does anyone else experience that to the degree that I do?
Eager to learn more than what Sacks presents in his brief chapter, I Googled aphasia and instantly regretted it. Here’s what I found at that reliable bastion of truth, Wikipedia:
“Acute aphasia disorders usually develop quickly as a result of head injury or stroke, and progressive forms of aphasia develop slowly from a brain tumor, infection, or dementia.”
My language glitches have become frequent enough in the last 2-3 years that I can no longer ignore them. The missing words. The struggle to retrieve words. The odd, unpredictable substitutions. The Scientist says that my receptive language difficulties seem to have gotten worse in the past year too. I ask him to repeat himself a lot, especially when he’s not facing me and I don’t have the advantage of watching his lips.
And this is where I think it pays to stop Googling and back slowly away from the neurology textbook.
The language oddities I’ve described here are firmly in the “inconvenient” category for me right now. Unless that changes, I’ll consider the similarities to aphasia symptoms an interesting bit of trivia. Stay tuned . . .
**In proofreading this multiple times, I found 7 missing words (my, their, a, I’m, an, the and of) and 1 incorrect substitution (ever for even). There may be others that I missed.
Through the magic of old home movies (actually DVD transfers of grainy super 8 footage), I’ve been able to study bits of my childhood, looking for typical early childhood signs of autism.
Hindsight is not only 20/20 it’s very entertaining. I decided to liveblog scenes from my autistic childhood, so you can share in the fun.
Let’s go back in time . . .
DVD #1: The Early Years
Through most of the first disc I look like an average baby and toddler. Maybe a little hard to engage at times. I’m often staring intently at something off camera. I’m interested in objects as much as people. Give me a baby doll and I’ll probably hug her. Or wield her like a club. It’s a toss up.
I’m not the most expressive baby. I more often look panicked or confused or grumpy than happy. Hmmm, when I do look happy it tends to be the shrieking, hand flapping sort of happiness.
Then this happens:
Doesn’t respond to his or her name or to the sound of a familiar voice.
Soon I see more clues:
51:55 – I’d rather sit and bounce on my ball than throw or kick it.
53:01 – The first of many shots of me happily swinging on my backyard swing set.
58:38 – A little hand flapping for the goats at the petting zoo.
1:04:14 – Here I am getting a haircut. I loved going to the hairdresser because it meant I got to play with the rollers and hair clips. And by play with, I mean sort by size and color.
Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways.
DVD #2: Vacation!
Being away from home causes me to stim nearly nonstop. In the first twenty minutes, I’m 3 to 4 years old and still an only child. I wonder if being the first child–with no siblings to compare my behavior to–makes my autistic traits less obvious to my parents.
3:40 – Here I am rocking back and forth in my stroller at Santa’s Land.
5:21 – My parents prompt me to wave to the camera. Again. I rarely wave unless they tell me to.
Uses few or no gestures (e.g., does not wave goodbye)
8:12 – An entire reel of me sitting beside my inflatable pool, washing the grass off my feet. I’m still doing it when the camera shuts off. I seriously did not like having grass stuck to my feet. Or grass in my pool.
9:40 – Happily swinging on a porch swing.
9:52 – Really happily swinging on a chain link fence. Okay, more like happily full body slamming the chain link fence.
Flaps their hands, rocks their body, or spins in circles
10:39 – Staring intently at an animatronic display. So intently that I have my face pressed flat up against the glass.
11:40 – Swinging on a glider. A disproportionate amount of these movies are of me swinging on things.
Exhibits poor eye contact
12:42 – More rocking, this time while posing in front of a statue of a giant pig.
12:56 – More intense staring at animatronic gnomes.They’re rocking gnomes. I love them. In fact, I love them so much, I’m rocking in time with them.
13:20 – More staring. This time at dwarves.
14:18 – Here I am rubbing Humpty-Dumpty’s egg-shaped body. Over and over again, my parents pose me on or next to something and I immediately start rubbing my thumb or palm over the closest surface.
Engages in repetitive gestures or behaviors like touching objects
15:49 – Swinging from the rope of the school bell in an old fashioned schoolhouse.
16:32 – Bouncing up and down with the White Mountains in the background.
You get the idea. Ten more minutes of vacation footage and I’m constantly in motion. Bouncing, rocking, fidgeting with my windbreaker zipper, kicking my feet, flexing my knees, jiggling my feet, rubbing surfaces, hand flapping.
I’m thinking it’s time to shut the DVD off, assuming I’ve made my point, when I see my sister do something I haven’t done once in more than 90 minutes of video: she points. She’s about a year old, and she’s pointing at the petting zoo animals. That’s when it hits me. I have one of the classic early childhood autism symptoms–a failure to point at objects.
Doesn’t point, wave goodbye or use other gestures to communicate
Soon we’re at Disney World with a family friend. She and my sister point again and again at things they’re excited about. I don’t point at anything. Not once.
30:06 – I’m about six here and I’ve learned to wave at the camera without being reminded. I’m riding on a carousel and wave at the camera every single time I go by. Yep, I’ve got the waving thing down good.
35:36 – We’re at Gettysburg. I’m around seven years old. My mother and sister are posing by a canon, waving at the camera, chatting away. I’m climbing on the canon, rubbing the canon, pretending to ride on the canon, paying no attention to them or the camera.
Appears disinterested or unaware of other people or what’s going on around them
It’s interesting to see footage of my sister and I at similar ages. I see how much more likely she was to engage with the camera, to wave spontaneously, to be smiling or talking or paying attention to the people around her.
I also see that I took a lot of cues from her. She’s four years younger, but at times–like when we’re interacting with characters at Disney World–I’m obviously watching her and following her lead.
And now that I’m no longer the sole focus of the camera’s attention, I’m a lot more likely to just wander out of the frame.
DVD #3: A Slew of Holidays with a Dash of Empathy on the Side
12:10 – Back in time again, to my 2nd birthday party. It’s a huge one. Every cousin, aunt, uncle and grandparent wedged into our basement rec room. I’m looking a little overwhelmed, circling a pole in the background as my cousins mug for the camera. When it’s time to blow out the candles I bravely poke a finger into the icing, lick it off my finger and immediately grab a napkin to clean my hand. Some things never change.
17:51 – Halloween. I’m six years old and for the first time I see evidence of my inability to tell if anyone is paying attention when I’m talking. As I scoop the seeds out of my pumpkin I’m rambling on about something to my sister who is too young to understand and my mother who is bustling around the kitchen, not even in the frame half the time. I’m blissfully undeterred.
Tends to carry on monologues on a favorite subject
20:12 – A bunch of Halloweens flash by. I’m Raggedy Ann. I’m a nurse. I’m a cat. Every costume has a stiff plastic mask which I pull off repeatedly. After yanking off the cat mask, I tug at my hair with both hands. Even today, my single most vivid memory of Halloween is the warm wet sensation of plastic against my face as my breath condensed on the inside of those masks.
29:50 – It’s snowed! My eighteen-month-old self is skeptical. I touch the snow with one mitten. Look at my hand. Immediately begin flapping. Cut to a shot of me a few months later, enjoying a fine spring day by toe-walking up the driveway. Yet another thing I’d say I never did if I hadn’t seen it here.
May be unusually sensitive to light, sound and/or touch
40:19 – My sister and I are playing with my dolls in my room. By playing I mean I’m lining them up against the wall by height while preventing her from touching them. She enjoys this about as much as you’d expect a toddler to.
Obsessively lines up or arranges things in a certain order.
Looking back at these old films through the lens of autism is really enlightening. I had telltale signs of Asperger’s syndrome at a time when AS didn’t exist. I don’t remember much of what I’ve related here, but I do remember being a generally happy kid in my preschool years. Because I didn’t attend nursery school or daycare, I guess spent my first five years in a bit of a bubble, happily stimming my way through Santa’s Land.
This morning I was reading an article about teaching Autistic children. It emphasized that teachers are more effective if they take the perspective of the children they teach.
My first thought was can an allistic (non-autistic) teacher truly take the perspective of an Autistic child? They can try. They can educate themselves about autism and autistic traits. They can observe Autistic people and create situation-based rules. They can make assumptions about what an Autistic child is thinking or why they are behaving in a certain way. They can ask Autistic individuals for input and apply that input to their interactions with their Autistic students.
But they can never, ever truly take the perspective an Autistic child. Why? Because they aren’t Autistic. They can’t know what it feels like to be Autistic.
Do you see where I’m going with this?
When you think about it that way, Autistic people aren’t any more impaired than allistic people in perspective taking. We can take the perspective of other Autistic people quite easily.
It’s taking the perspective of the other 99% of the population that’s challenging. Why? Because allistic thinking doesn’t come naturally to us, no more than Autistic thinking comes naturally to an allistic person.
Experts say that Autistic people don’t realize that others have thoughts that are different from their own. If we’re talking about Autistic adults, this is just silly. Of course we know that other people have thoughts that are different from our own. We don’t always have a good idea what those thoughts (or feelings or motivations) are; for better or worse, we make assumptions based on our own thoughts, feelings and experience.
Allistic people do the exact same thing. Luckily for them, the majority of people around them are also allistic. By default, the odds are quite high that they’ll make a correct assumption about another person’s perspective based on their own perspective. And when a non-autistic person makes an error in perspective taking, we don’t say they’re impaired, we call it a misunderstanding.
If an allistic person tries to take the perspective of an Autistic person based on their own thoughts, motivations and experience, the results can be wildly off the mark. A good example is when teachers and caregivers treat meltdowns as an intentional behavior designed to elicit a specific response. Equating a meltdown with a typical temper tantrum is a massive failure in perspective taking. So much so, that from an Autistic perspective it would be funny if it wasn’t so sad and harmful.
If 99% of the population were Autistic, it would be easy to label the allistic minority “impaired” when they failed to instinctively grasp why their family members all regularly had meltdowns or why everyone on the bus except them was stimming or why their new landlord communicated by typing instead of speaking.
Does that sound like a scary world to live in? I suspect for some it might. It’s hard being surrounded by people whose behavior you don’t understand.
Welcome to the Autistic experience.
We are not born instinctively understanding the allistic world, any more than allistic people are born instinctively understanding the Autistic experience.