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.
Frances: Did you ever realize that we don’t see our own faces? We don’t know if mirrors are lying. We never know what we truly look like.
I just found this gem of a conversation. Frances had just turned four.
Frances: The ugly duckling is really a swan? The swan egg got accidentally into the duck nest? How could that have happened? That doesn’t make any sense…!
One day, when Frances was about 18 months old, she took hundreds of children’s books off a set of shelves in the living room and stood on top of the haphazard pile to get more.
She sometimes lined the entire house with a path of books that encompassed the dining room table and led back to the front room.
From the time that she was seven months old, she perused books with an unusual intensity and focus.
As a toddler, she would push a book into my abdomen or my neck or my hands and say, “Read!”
By the time she was 2.5 years old, I was reading stacks and stacks of books to her daily (usually 20 but as many as 30 or 40 at times).
At the library, where most parents might be encouraging their children to choose books, I was popping throat lozenges and encouraging her to go play just so that I could give my voice a rest.
She cried if books got damaged in the tiniest way. She protested loudly if anyone had written their name inside a book. If she became angry with me, she would threaten that we would no longer be able to visit my favourite bookstore.
She always had a book in her hand (for comfort, I assume).
The local bookstore knew us so well that Frances was allowed to take a book and read under a table where she wouldn’t be disturbed.
When Frances is reading is pretty much the only time (besides sleeping) that it is quiet in our house — the ONLY TIME.
She’s a nonstop talker with a more-than-average amount of energy and bounce in her running steps.
The other day, after school, there was a prolonged period of quiet (say, five minutes). It was very noticeable which could only mean that she was reading. Then, I heard her say to herself:
“This book is not very instructive on drawing horses.”
I knew that, within a minute or so, the house would be virtually alive again with the sound of her chatter and laughter and objects banging around again as she searched for something that she absolutely needed.