One fascinating aspect of 10-year-old Frances’s personality is that she remembers facts so well and that she shares them kind of…randomly.
For example, the following recent conversation was brief but interesting:
Frances: The atomic number of copper is 29.
Me: Okay, thanks.
There was no preceding conversation. We just happened to be passing each other in the hallway, and we both went our own way afterwards.
Part of me knows that I’ll have to help her understand that she can’t start conversations like that with, for example, someone walking past her at school; another part of me does find it adorable.
At her riding lesson, Frances interrupted grooming her pony to remind me of something: It was the birthday of her friend’s guinea pigs and she wanted to record her birthday wishes — with the pony — in a video.
Though it was a very serious occasion, I found it difficult not to laugh at the cuteness of the situation.
I also couldn’t help considering it from a guinea pig’s perspective…
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.
For so many years, as is often the case in families affected by ASD, our autism sibling has been more independent as her sister’s needs have been addressed. It has been as if she is on the Frances Show where it’s all Frances all the time.
This has recently changed, and both she and Frances are adjusting rather well to the change in family dynamics.
We have discovered that Pink Cup Sister has special needs as well — though not the same as those of Frances — and she has been receiving the lion’s share of attention recently.
How has Frances coped in situations in which I can’t pay her as much attention? She’s done really well. She doesn’t usually leave my side, but she will give us privacy when Pink Cup Sister, Pink Cup Dad and I have to speak of matters personal.
This isn’t to say that we’re not still working on goals with Frances, too: she struggles with issues of food, coordination when dressing, following sequences without verbal prompts, communicating when she feels unsafe at school and a host of other issues that would fall under the “social” category.
Recently, I was saddened and surprised to learn that a child in her classroom isn’t very patient where Frances’s interest in horses is concerned.
Now, as is sometimes the case with ASD, my daughter’s interest is all-consuming, and she will speak about horses frequently because that is the means by which she has discovered that she can relate to others.
The other child will frequently challenge Frances on horse facts and tell her that horses are weird, etc. He’ll say anything to bother her.
I’ve learned that another boy sticks up for Frances and refuses to let the mean boy’s behaviour go unchecked.
I think she’s had enough though this week: she tells me that she had the “perfect storm” for a meltdown when loud noise, too many people, too much movement and the mean boy’s comments combined and caused her to be overstimulated. She cried uncontrollably, and her wonderful teacher helped her through the episode.
The teacher did inform me that the boy is, in fact, being mean to Frances, and that she is keeping them well separated to avoid any more conflict.
There was also a change in her schedule that probably contributed to her meltdown, too: her father was away on business for the week.
Let’s just say that it has been a long week for all of us.
I’m so glad that it’s Friday. Yay, Friday!