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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Pragmatic language

Me: Can I give you a muffin?

Frances: Gypsy moths are an invasive species.

Me: Okay. Here’s a muffin.

Because it remains a challenge for Frances, her social/pragmatic language often produces very unusual exchanges between us.

This one caught me off guard one recent morning, and I had to stifle a giggle.

I will always help as much as possible to make being with others easier, yet this is one facet of her personality that I absolutely adore.

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.

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.)