Tag Archives: social communication

Autistic Motherhood: The Social Dimension

The first article in a 3-part series on motherhood is out today at Autism Women’s Network:  Motherhood: Autistic Parenting

I kicked off the series with the social aspects of motherhood because that was one of the biggest challenges for me and for many of the women who answered the survey questions. In the article, I focused a lot on the areas of difficulty that we experience and touched on some general ideas for  supports. 

There is clearly a big gap when it comes to resources for autistic moms. I’m wondering if any of you have found solutions to the need for social supports. Do you know of online support groups for mothers on the spectrum? Have you found ways to communicate effectively with your children’s school or have you gotten any social supports from local social services organizations? Have you enlisted help from your own parents or family members when it comes to the social aspects of being a mom? If you’ve done things that have worked, I would love to hear about them and I think lots of people would benefit from having a pool of realistic options to draw upon.

As always, I owe a huge thank you to everyone who answered the survey questions. There were more than 70 responses, many of them incredibly detailed. I’m humbled by how honestly and openly you all share your stories. Although I couldn’t include quotes from everyone, I did my best to find the common threads of our social struggles and portray those in the article through representative quotes. There are still two more articles coming, so if you’d like to contribute, please feel free to fill out the survey in the coming days.

motherhood2

Socializing: Reboot

I had jury duty recently. For those of you who aren’t familiar with the US jury service system, US citizens are periodically required to fulfill our civic duty by reporting to a local courthouse and making ourselves available to sit on a jury panel for a criminal or civil trial. The processes vary quite a bit from place to place but often you show up for a day at the courthouse and get sent home without actually sitting on a jury.

Unless you’re really lucky. Like me. Then, somehow, you get put on a jury 2 out of the 3 times you’ve ever been called to serve.

Together with seven other people, I got assigned to a jury panel for a 3-day civil trial. The case was strange. The testimony was at times fascinating, at times mind-numbingly boring. None of that is especially what I want to talk about.

Like so much else in life these days, I approached jury duty as an experiment. A socializing experiment. I decided it was the perfect opportunity to reboot my approach to interacting with strangers. It was a relatively safe, time-limited interaction–if things went poorly, I knew that I would only have to spend three days with these people and then I’d never see them again.

In the past, I would have done my best to pass, hoping that my fellow jurors would like me and more importantly, not think I was too weird. This time around, I made a conscious decision not to worry about that.  Continue reading Socializing: Reboot

Silence I: Frustration

The first in a 3-part series on silence. 

*

My silence is frustrating. For me. For others.

I don’t mean the silence between the words, the comfortable kind, the long drive in the car, relaxed lunch in the park, playing video games for hours side-by-side on the couch, reading together kind of silence.

Frustrating silence is the kind that arises in place of words, filling up all the space where the words should be. It starts with a heaviness in my chest, like my breastbone has become a plate of armor thick enough to stop a lance or a bullet or a barrage of charged emotions.

The weight holds the words down, tethered tight, floating out of reach. I can see them, hear them. Inside me, there is a cacophony of noise as the words rattle and clash, struggling to escape. It feels as if I’m shouting and yet there is no sound, except within me.

Then one breaks free. Two. Five. A phrase or a sentence. Small and inadequate to the task, they float up, fill with breath, are shaped by tongue and lips. Often the ones that escape are the most practiced. Scripts. Platitudes. The reliable “I don’t know.”  Continue reading Silence I: Frustration

The Myth of Passing

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

Rules to Live By

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

Echolalia: That’s What She Said

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

Socially Inappropriate

Socially appropriate.

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?

Where does the line between socially appropriate and socially inappropriate lie? Who decides?  Continue reading Socially Inappropriate

(Not) a Little Slow

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:

  1. Treat me like a competent adult.

  2. Be patient. I might need a little extra time to compose my answer or to process what you’ve said.

  3. 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.

  4. Assume that if I don’t understand something, I’ll say so.

  5. 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.

  6. Give me time to write down key information if I need to.

  7. Don’t oversimplify your language or speak unusually slowly or loudly.

  8. If you’re giving me verbal instructions, break them down into specific steps and explain one step at a time.

  9. If I keep repeating a question or statement, I need a stronger acknowledgement that you’ve heard and understood me.

  10. 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.

Survey: Special Skills and Fun Stuff

Tuesday!!!!!! I’m so excited. I’ve missed our interactive Tuesdays.

This week’s survey questions are all about special skills and fun things that didn’t quite fit in the other categories. You can answer here in the comments or answer anonymously at Survey Monkey.  Question #10 has 4 parts because Survey Monkey only allows 10 questions on their free surveys and I didn’t want to break this into 2 surveys.

Answer as many as you like. Tell us about your awesomeness. Have fun!

Special Skills and Fun Stuff

  1. What is your favourite thing about being autistic?

  1. Do you have hyperfocus? Do you like it? How long do you focus for, on average?

  1. If you like numbers, what’s your favourite number game?

  1. What is your autistic superpower? (data processing, attention to detail, math, super-concentration, beautiful flapping, lucid dreaming, synasthesia etc)

  1. What cool thing about being autistic do you wish that neurotypical people could experience?

  1. Do you use echolaelia to learn foreign languages?

  1. Apparently, most people feel that their inner self has a particular age unrelated to their chronological age. How old are you inside? Are you older or younger than when you were a child?

  1. If you have a photographic memory, how do you cope with physical locations becoming crowded with all of the history?

  1. Do you have childish or otherwise ‘age inappropriate’ interests or did you at an earlier point in life, such as during your teenage years?

  1. And a multi-parter for number 10 because Survey Monkey only lets me make 10 questions. Do you:

[A] experience synesthesia?

[B] regard yourself as hyperlexic?

[C] think in words?

[D] understand the body language of animals?

Is there a Link Between ASD Motor Skill Deficits and Social Communication Difficulties?

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.

lips

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.

eyes_boy

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?