I haven’t said too much in the short history of this blog about my daughter Amelia’s diagnosis of autism.
I’ve touched on it and certainly described many related behaviours, but we are only at the beginning of what this news means for our family.
I’m reluctant to be too definitive about it because the diagnostic progress takes a long time and we are currently stuck in the no-man’s-land between one stage and the next.
Since March, when our paediatrican first put the words autism and Amelia in the same sentence, we have spent an agonising four months waiting to see the next specialist in the queue to assess and confirm the diagnosis.
While we have been in this frustrating state of diagnostic stasis, Amelia’s red-flag behaviours have persisted and some have begun to escalate beyond our reach.
As parents, we are running out of strategies to alleviate how far these things impinge upon Amelia’s generally happy day-to-day existence. We needed help at least a year ago, so July seems so far away, even if it’s nearly upon us.
I am trying not to worry, to smother my anxieties as they creep up my spine and into my harried mind. But it’s hard to hold onto the distant promise of answers to the question I ask my husband every night after we turn out the light: “Do you think she’s going to be okay?”
Last week, my Mum and I decided it would be fun to teach Amelia some card games. It was cold and rainy outside, so we thought some old-fashioned parlour games would keep us all entertained.
We opted for ‘Snap’, because it’s easy to teach and is great for learning about matching pairs and turn-taking. The three of us made a little circle on the floor and my Mum dealt us cards from the deck.
After a quick précis of the rules, the first game of Snap kicked off without a hitch. Initially, Amelia seemed more interested in her cards than the object of the game, but she was so happy to be hunched on the floor with us, thick as thieves, that it didn’t matter.
The she warmed up and started to appreciate the simple joy of smacking your hand down over a jumble of cards with a pair on top.
It made me laugh that she kept playing her cards from the bottom of her little deck, almost unconsciously. She would have made the long line of wily card players in my family terribly proud.
I have to admit that my Mum and I are outrageously loud and competitive people when we are fired up and this day was no exception. We were really getting our Snap-groove on, leaning intently over the cards, and screeching like banshees when a match was made.
We forgot to yell “Snap” and instead went with a sort of barbaric “Yaaaaaaaaaaaaaaaaaaaaah!!!” when a King fell onto a King or an Ace met its match on the carpet deck.
This should have been a simple and fun thing for us all to share on a rainy afternoon, and Amelia used to love joining us in moments of carefree hilarity. But this time she became deeply distressed by our laughter, by the volume of our voices and the changes to our facial expressions, caused by the ecstasy of winning. By our happiness.
This type of distress has been happening a lot lately. As soon as voices are raised in excitement or people are talking in higher volumes or laughing loudly she is gripped by a terrible anxiety and starts yelling “No laughing, no laughing!”
Amelia runs at us and puts her hands over our mouths, desperate for the change in atmosphere to cease. We have to hug our girl to reassure her that everything is alright.
Her fingers will frantically pull at my mouth as she shouts at me to “smile, smile, Mummy!” There’s something comforting or recognisable Amelia wants to see restored in my expression, volume and tone.
She watches my face incessantly but her wires are all crossed so the signals that should tell Amelia that I’m happy/pleased/relaxed are being received as a mixed message that is both negative and scary.
This extreme reaction now intrudes on many conversations or occasions of spontaneous laughter both at home and when we’re out visiting people. It is upsetting and baffling to watch and experience.
The rainy day card game was no different. Amelia just couldn’t handle the raucous play going on around her, even though we tried to explain that laughing is good and we were only having fun. But she didn’t understand.
There was something so dreadful about the gulf between the collegial laughter that my Mum and I were so enjoying and her absolute terror – and that’s what it was – at the sound and sight of us.
We fought hard to control ourselves, like naughty schoolgirls confronted by a forbidding teacher who definitely does not get the joke. But in this case, it was my poor daughter, who was now sobbing and begging us to hold her so she would know that everything was fine in the world.
But it’s not, is it? How can it be when a game of cards and shared laughter can reduce Amelia to an emotional wreck? What is happening inside her to make her so increasingly confused and upset by these shifts in the behaviour of people she knows so well? How can the sounds of merriment be so lost in translation that they become threatening to a child?
How did we get here? And how on earth do we find our way out?
July cannot come soon enough for the number of questions we have and the answers we so urgently need.