Honesty as truth speaking…

Yesterday, we had a support worker from a respite program come to our house for an interview.

We are members of an organization that offers this summer service (a support worker comes to take Frances out into the community for a few hours each week) as well as monthly opportunities to socialize at well-planned events.

As it turned out, we had met our support worker before, last year, at one of the few events that Frances had actually wanted to attend.

We had gone to a planetarium, and while waiting for the evening show, Frances had met London (about 17 years old) and stayed by her side. They were fast friends.

Frances even opted (unbelievably) not to sit with me during the show and to sit beside London instead.

London arrived at our house on time, and I showed her to the dining room.

Frances had arranged with me beforehand that she wouldn’t have to take part in the interview, but, as London and I spoke, Frances came in to the dining room.

“Hi, Frances! It’s good to see you again…”

Frances took a seat at the table.

“We had such a great time last time we met!” London said.

Finally, Frances spoke: “I think I vaguely remember you.”

😂 😂 😂

I love her honesty! Since Frances really does want to make friends and has such a difficult time doing so, we are working on learning when not to be so strictly honest (since she will not lie).

I wasn’t worried, tho’: London is familiar with this possibility when some people with ASD, Aspergers, and autism interact. Besides, many people find her honesty to be a refreshing change.

I have to say that, when she was really young, and we didn’t have a diagnosis, she would not have even acknowledged that London was speaking to her.

Greetings appeared in stages: at school, teachers insisted on speaking to Frances and greeting her. For years, Frances was not responsive.

When she did start to respond, it was usually indicated by a change in her position or moving her head away.

By the time she was around 8 years old, she would mutter a “hello” without looking up and without stopping if she were moving.

At 11, Frances may respond with a “hello” or “hi” or she may respond with an observation (that is or is not relevant to the situation). If it’s an observation, there will be brutal honesty. Either way, it is a response!

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Um, no…But yes, absolutely

Frances: Sarcasm — isn’t that just lying? (Nov. 17/17)

People with ASD can experience difficulty with figurative language. What I have discovered is that “not understanding” can, in a sense, mean “just getting to the bottom line” of the matter with Frances.

Ordinarily, she has difficulty interpreting euphemisms, idioms, gestures, etc. Here, her struggle appears to concern purpose or utility: Why would one use sarcasm? Why does one, oftentimes, use sarcasm as humour? In other words, why is it considered to be funny?

It’s really amazing that, even though she struggles with non-literal language, she is very witty and understands figurative language when it is her own, when she, herself, produces it.

For example, when she was newly six years old and was feeling unwell, she once said:

I’m feeling as sick as a tornado can be loud…Is that a lot? (May 28, 2013)

Frances has always kept me on my feet — in more ways than one — and always at least one step away from knowing everything about her.

She’s absolutely fascinating — I am her mother, after all — and her ability to get straight to the heart of any matter is just one more thing that impresses me.

Worth a try

Frances: I think people are getting bored of me talking about horses at school.

Me: You’ve got to let others talk about themselves.

Frances: I let Sally talk about her guinea pigs, but it was so boring.

Me: You have to let yourself be a little bored, and then others won’t mind being a little bored when you speak of horses.

Frances: Okay.

I wanted to include this conversation, which happened before school, because I think I’ve found another way to reach Frances. (Also, it illustrates a difficulty that children with ASD may experience.)

I’ve heard professionals advise Frances to do a “social fake” where the child pretends to be interested in what someone else is saying. It doesn’t work with Frances. She doesn’t believe that her conversations about horses aren’t always riveting to others. So, I tried another approach by asking her to be bored for a few minutes.

By letting her know that others feel a little bored sometimes just as she does, she may start to realize when people don’t want her to speak and interaction could go more smoothly.

It’s just a thought. I’ll let you know if it does, or if it doesn’t, work.

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: (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.