For anyone who struggles with the meaning of gestures (such as pointing, request for handshake, etc.) the world must be difficult to decode. For one thing, their meaning varies from culture to culture; for another thing, the different contexts in which a gesture appears at different times, or should not appear, within the same culture can be very subtle.
The okay symbol that we know in Canada and the U.S. — thumb and forefinger touching while three fingers are raised (👌) — came up in conversation after Pink Cup Sister sneezed rather forcefully in the car one day.
Frances: Are you okay?
Pink Cup Sister: (uses👌 symbol)
Frances: I don’t know what that means.
Pink Cup Sister: It means I’m okay.
(Frances struggles to imitate her sister using her middle finger instead of her index finger.)
I think this is where ageing can make features of HF ASD more distinct. Most children without ASD will probably know this particular symbol (👌) by ten-and-a-half years of age.
But I can remember when Frances was five years old: she looked puzzled as one of Pink Cup Sister’s friends held a hand up to signify a high-five was being requested of her. At that point, Pink Cup Sister took Frances’s hand and high-fived the friend. Before any diagnosis was sought, I remember wondering if perhaps a five-year-old would be expected to know the symbol for a high-five. I wasn’t sure, but I suspected so.
When she was six, and visiting with her developmental paediatrician, I remember the doctor telling her that he needed to put batteries in the train that she was holding. He held out his hand, and Frances just looked at it and then continued to be interested in the train. He repeated that he needed to put batteries in the train and kept his hand extended toward her and the toy. She didn’t pick up that cue, and I realized that she didn’t know the gesture and wondered, then, too, if she would typically know it at her age. (I silently suspected that a child of six would usually respond by handing over the train.)
Not long after, Frances was diagnosed with HF ASD based on psychometric testing and lengthy physician-observed appointments. The diagnosis wasn’t a surprise to us, but certain features of ASD were only just becoming apparent or hadn’t even yet been revealed.
It was becoming clearer to me that social difficulties could be quite profound and that they involved more than the verbal interaction with which she was (and is) struggling.
But now, as I listen to her play a passage of the Moonlight Sonata perfectly and with great sensitivity, I can hear her communicating using her fingers in a way that many her age could not yet manage.
Certainly, gestural and body language challenge her— such as when people point to instruct or inform Frances — but she thrives on decoding the language of music (whether by ear or by reading notation).
And when she plays the piano, it seems as if she is encountering something mysterious and interpreting it for us using a beautiful and clear form of communication that she intuitively understands.
She sometimes says “thank you” instead of “you’re welcome”, or she might say “you’re welcome” before the other person has a chance to thank her.
My adorable little girl is learning language and context, so I always tell her the correct response.
But, as I’ve mentioned recently, in these moments I get a chance to appreciate who she truly is just as she is.
I guess what I’m trying to say is that her struggle with pragmatic language often creates precious moments between us.
I know that it’s my job to make sure that Frances knows social rules and to help her make sense of them, but sometimes it is very endearing when she doesn’t remember.
For example, in the car recently, Frances handed her sister some food that she intended to share and then said, “You’re welcome.”
“You have to wait until the person says, ‘Thank you,'” I reminded her.
“Oops. I sometimes get the words confused,” she replied.
She hadn’t said “you’re welcome” sarcastically; the words that she needs in social situations just aren’t always available to her or she confuses words because following the rule hasn’t yet become automatic to her.
At those moments, even though I step in to help, I’m really aware of just how much I appreciate who she is.
When Frances verifies rules with me by asking questions (all day long), they’re often — but not always — correct.
I know that there are much more recent examples, but I just happened to have seen the following while browsing my notes.
Frances: You wash your hands after taking off skirts, right? (May 1, 2016)
It’s the point at which a developmental difference is fairly obvious. When she gets it right, it sounds like a curious kid who is focussed on rules; but when she gets it wrong, it sounds like a very untypical question for a child of her age (or anyone) to ask.
She’s quite capable: intellectually, she is about 13 years old (socially, she is much younger), while her actual age is nine. Her questions just sometimes reflect a difficulty with generalizing.
Personally, I love her questions and verifying of rules, and sometimes I feel bad when I have to correct her.
A couple days ago, as we waited for a bus in the pouring rain, Frances asked, “Who in their right mind would be out in this kind of weather?”
I boarded the bus and sat beside her. Frances leaned over, and in her best stage whisper (for she has no ‘library voice’) said, “Remember when I asked you who in their right mind would be out in this weather?”
I put a finger to my lips to indicate that she needed to lower her voice.
“Remember?” she asked more loudly.
“Yes,” I answered.
“Well, apparently? There are lot of people who are out of their minds in this town!” she said loudly.
I lost my composure and laughed out loud.
With great sincerity, Frances looked at me, annoyed, and said, “Shhhh. You need to be quiet.”
Frances’s questions are usually, but not always, delivered out of the blue or in rapid-fire style.
There are times when her questions are kind of jolting in a personal way because they provide a glimpse of the ways in which she struggles from day to day.
In this panel, at five years, she has trouble decoding culture-specific head movements to accept or to decline an invitation. (I had to be certain, of course, that she was not simply confusing the words shaking and nodding — she was not.)