It’s the moon, isn’t it? Or maybe it’s the stars. It’s not clear from the question, but it could be either.
Most of us instantly understand what is being asked here and can readily name at least one heavenly body we expect to see gleaming in the sky at night.
But what for us might seem like a simple question was, for my daughter Amelia, a challenging hurdle in an obstacle course of tests conducted by her psychologist, MC, over the last two Sundays to assess her for suspected autism.
Some tests, like naming random objects in pictures, assembling puzzle shapes and reasoning out visual sequences presented no problems to her at all – she sailed high over these hurdles as far as her abilities could carry her.
When her focus could be captured and held tightly before it evaporated, the alertness of her mind and her desire to learn and share lit up her face like a beacon. Like that round, shining moon in the night sky.
Other tasks frustrated her or downright eluded her grasp; more complex puzzles, increasingly abstract questions and images, or the replication of assembled blocks ‘just like’ MC had done before her were abandoned in quick time.
For the most part, Amelia’s behaviour imposed its mighty will on the proceedings. Her strategies for defending herself against the ‘tyranny’ of testing were devastatingly effective and impossible to countermand.
From the moment we walked into MC’s large and clutter-free office space, Amelia clicked into her manic mode of being. There was no shaky start leading to a calm middle with a fiery end. It was game on from the get-go.
MC had arranged a table with small chairs where she intended to sit across from my girl and enter into some controlled back and forth for her assessment. We were to sit at a larger, parallel table and stay very much in the background.
Predictably, Amelia had other ideas. There were so many examples of her need to assert complete control over this new environment (and person).
First, she selected one of the ‘adult’ chairs and moved it to the smaller table. Then, she rearranged the rest of the furniture to suit her purposes. It was the feng shui of a defiant child who will sit wherever and in whatever chair she damn well chooses.
As for our location, well, Amelia was having none of this stuff about parents playing a two-hour game of ‘keepings off’. She dragged our chairs close to hers and MC, like us every single day of our lives, just had to go with it.
The psychologist was forced to conduct her tests on the table, under it, on the floor, everywhere except where she had intended. MC quickly worked out that it’s Amelia’s world and we’re just in it.
The rules that govern this kind of assessment are highly strict. Parents are not allowed to verbally intervene or help unless under specific instruction. Questions are defined by a tightly-crafted script, designed to give the least information or hints, hoping to draw out responses that identify understanding without aid.
Sign language and gestures are also not permitted in this context so could not be used to help Amelia comprehend what was being asked of her. Nor were there attempts to use touch to catch or regain her attention, even when it was such a struggle to hold.
While I understand that cognitive testing needs to be conducted consistently (and without undue influence), I have been wondering and worrying about the efficacy of a purely verbal process like this for a bilingual deaf child with a speech delay.
It was very difficult for me to literally sit on my hands and keep my mouth shut when certain questions – things I am sure Amelia knows – were posed to her while her face was averted, in a soft voice, using a lexicon that she would not recognise.
Allow me to interpret an instruction such as ‘Amelia, build the blocks like I have done’ and I could construct meaning with key words and the accompanying sign of ‘same’ along with a strong voice and clear gestures and I am certain she would know what to do.
But there’s a big difference between knowing what to do and being prepared to do it. The very real disadvantage of a speech-only approach explains a part but not all of her refusal to participate in the tasks set for her that first day.
I could see a little switch flick inside her as soon as a question had genuinely taken her outside of her field of knowledge. Once that little circuit breaker had been ignited, Amelia escaped to a small, empty cupboard.
That’s not a metaphor; it was literally, an empty cupboard near the door that seemed to appeal immensely to her. It was safe, dark and she had already begun storing objects from the room inside it. It was the quickest creation of a makeshift comfort zone I have ever seen.
It clearly fit the security bill for her, because she spent about ten minutes of each appointment inside it. At the beginning of the second session, she walked straight into MC’s room and set up the cupboard space in preparation for its imminent use as a recovery bolt-hole.
As a place to regroup, I wish I could have climbed in too. Because it’s a weird feeling to be in an appointment where you so want your child to ‘do well’ but at the same time you want the specialist to see all of the strange and difficult behaviours that have led you to be there in the first place.
Okay, so there were plenty of low lights and we spent a lot of the time sitting awkwardly, unsure what our role was or wishing we could take a more active one, but there were some sweet moments in the mix that made me smile.
The majority of the second appointment was taken up with ‘free play’, where MC placed lots of toys around the room to watch Amelia’s activity, how she played and for how long. Then MC engaged in some one-on-one play with her to see how well she related to someone other than us.
Out of her enormous bag of tricks, MC produced a Finding Nemo bubble blowing machine and cranked it up for Amelia. It released a multitude of tiny bubbles, sending them high into the air before they popped on their way to the floor.
I watched Amelia hold her beautiful face up in welcome supplication to the generous cascade of bubbles as they dropped onto her cheeks, nose and mouth. The pleasure in her features, now open and receptive, was so powerful I just stared and drank it in. I took every last drop of her joy to sustain me for the rest of the session.
In that same appointment, she took three chairs and lined them up in a row in the window corner of the room. She ordered me and her Dad to sit while MC sat behind taking copious notes.
Then Amelia ‘took to the stage’ before us and grinned, a signal of something exciting about to commence, and belted out a heartbreaking rendition of ‘Twinkle, Twinkle, Little Star’.
She was so proud, so delighted with her performance – this child who would not sit or comply or do anything other than what she wanted – and I had to bite down hard on my bottom lip to stop myself from crying.
My husband and I are taking a great leap of faith here, placing the hopes and fears of our family in the hands of a stranger in yet another clinical setting but we have no other options available to us. We simply have to keep our minds open to the possible benefits and the answers MC might provide.
But it’s a hard road. In the end, it doesn’t matter if Amelia sang about stars ‘up above the world so high’ – there are no points for effort or heart on a standard IQ scale.
And she didn’t know the answer to the question about what shines in the night sky. I don’t think she knows what ‘shine’ is and there weren’t enough key words or signs to help her decide which celestial object to name.
But last night, while I was driving Amelia home from visiting her grandparents, she craned her neck to look out of the car window to tell me excitedly and repeatedly all about that big, glittering moon she knows so well.
Yes, she knows about night and the sky and what a moon is, just not in the right order and not always at the right time.