Decoding gestures

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: (usesđź‘Ś 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 (đź‘Ś) 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.

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Language and context

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.

🙂

Saying goodbye

Frances has always struggled with pragmatic language (social language and skills in everyday interactions with others).

Partings for Frances have always been difficult in the sense that, at first, she didn’t know that speaking is necessary when people temporarily part ways. 

Then, after some time, she realized that something needs to be said, but didn’t know what to say. 

For us, for a while, it was good enough that she sensed a need to say something at all because we could slowly introduce her to some parting words. (We didn’t want to constantly correct her and risk damaging her self-confidence.)

But even when she was learning parting words, she still managed to surprise us with her responses.

In the above panel, I wanted to show that, as an ASD parent, there are times when we’ve temporarily accepted as “normal” something that would probably strike others as funny.

As an update: in the three years since the date of the panel when she was six years old, Frances went through a phase of using almost appropriate language. For example, when leaving for school, she would often say to me, “See you tomorrow”. Now, she will often say “goodbye” or “see you later”, if she acknowledges that I’ve said goodbye to her.

Saying hello

Recently, for the first time, Frances has tried a few times to say hello to different people — which is fantastic.

The difficulty that she encounters is that she is not reading the cues: the person is on the phone, the person is too far away to hear, the person is in the midst of noisy traffic. Consequently, her attempts have been unsuccessful.

I’m really hoping that she does not become discouraged and that she continues to try on her own (i.e., without being prompted or coached).

Parting ways…

I have been teaching Frances how to say good-bye to someone at the door when she leaves the house. 

This is not something that has come naturally to her.

From the time that she could speak, there were no greetings or goodbyes for anyone entering or leaving our home; there was no acknowledgement whatsoever. Even leaving her at school met with silence.

In January 2014, something wonderful happened: I stood partially clad at my cold front door blowing kisses back and forth with Frances as she left for school. 

My daughter, who was six-and-three-quarters, had never blown me kisses before! Not once, even though I would blow her kisses; now she was doing it, and I was at once lost in the moment and aware of how joyously elated I was.

(To most people, such a typical demonstration of affection between mother and child would not merit a blog post.)

After that, as she left for her school day, she would occasionally say, “See you tomorrow!” I didn’t correct her. I thought it was cute, but, more importantly, I thought it was enough for the time being that she was aware that something needed to be said. That was a huge success!

One day, she said, “I get the impression that I’m supposed to say something else, but I don’t know what that is.”

At this point, I explained that she could say, “see you later” or “see you this afternoon”. She started using these phrases once in a while. 

Within the past year or so, at eight years old, she started to say “bye” or “see you later” after I said it. 

(And she still blows kisses to me.)

Rules

I don’t know what other ASD parents, or professionals, call the process or behaviour, but Frances almost constantly “verifies rules” or extracts them from both real and imagined scenarios — and this is undertaken very seriously.

She has been doing this since she started speaking, and her language is, as is her pattern, in the form of questions.

The rules usually pertain to danger, and always occur (to the listener) out of context.

One example, from a few days ago:

“Are cows dangerous? Well they are bigger than me, they have a strong kick. So stay away from cows, right?”

Or:

“Never eat anything bigger than you, right? It could be dangerous.”

Personally, I find it very cute, but I know that she has to learn other ways of starting and holding conversations. (She did some work on this difficulty over the summer.)

Lessons

 
Last Saturday, we drove to Frances’s ballet lesson, but we also tried to have a bit of a leisurely drive as well.

I’ve written about it before in a lighthearted manner, but I don’t mean to trivialize the fact that it is very difficult to drive with Frances. 

It is hard to admit that the constant chatter is, well, constant: the questions come at us so fast and furiously that I will not drive with her if I’m not also a passenger.

This isn’t to say that there aren’t endearing moments — such as the funny questions that I frequently record — but I would be lying if I said that I always feel patient.

I don’t know why it took me 1.5 hours to think of giving her my telephone. It helped to quieten her for that final half-hour.

At any rate, it was something of a relief as we pulled up to the grand, ancient building in which her lesson is held.

We waited together, Pink Cup Dad, Pink Cup Sister, and I, without talking in the tacit anticipation of one hour of absolute silence.