In the maelstrom of assessment and diagnosis all Lois could find was loss.
High functioning autism.
Those words felt more pointed than expected and for Lois, they signalled her failure as a parent – the clues she had missed, how much she had misunderstood her own daughter, the torment she might have inadvertently caused her. Treasured memories were tortured by this new information. Aphra had spoken early. She had an enviable vocabulary. But Aphra had never been able to communicate what she was really feeling, her confusion, her fear at not doing the right thing, her panic at making a mistake, her need not to be laughed at. And now as a teenager she was beyond the usual sullen. She appeared almost unreachable.
The assessment described a daughter Lois half-recognised, but more clearly it spelled out her losses as a parent. It suggested she had never known her little girl. It pointed to her growing awareness of the chasm in the different ways they saw the world. Lois could no longer easily comfort her daughter. Something had broken her sense of ease with parenting. There was no simple sense of what the future might look like.
The report laid out all of Aphra’s struggles. It made a hefty bulleted list of what Aphra could not do:
• Adjust her interaction and communication
• Follow complex, open-ended instructions
• Prevent herself from getting overwhelmed
• Joining in
• Understand the expectations of others
• Match her facial expressions to her feelings
• Deal with noise
• Understand social nuance
Bulleted lists, Lois decided are a hollow way to present a complex, adorable, frightened individual.
It took a couple of days before Lois could see beyond the bullet points. In the same way that people can be shocked by the chaos to be found behind the net curtains of suburbia, Lois knew there was more to Aphra than any neat report could portray. She didn’t dispute the words of the experts. They had credibility, just as her neighbours really could look after their gardens. But reports are just the façade, the front required to access services, to get support, to have documented evidence of your needs.
Bored by the looming practicalities required to become this new kind of parent, Lois took up her art materials. She started to write and draw to produce a different portrait of her daughter that sums up what Lois has won by knowing her. This effort was not going to be dull bullet points and inflexible tables of recommendations, it was going to be a swirl of thoughts and furls of achievements. Lois took the flipchart paper, usually used to produce linear To Do lists and boring Action Plans filled with SMART objectives and took over the dining room table. No lists, no straight lines, she started with Aphra’s dark curly hair and her big green eyes. Then she added in the smiles, the roles she’s played, the prizes she has won, her obsessions, the pinpricks of joy, the quirks and smirks, the tears and the mischief. A matrix of the things that made Aphra who she really is.
Aphra was and is a wanted child – just the way she is. No shame, no blame, just celebration. Aphra is not her diagnosis, her educational label, her limitations – she is a possibility. She has a dryness of humour, a tenderness of thought, an attention to detail, a piercing focus. You cannot make Aphra do something she doesn’t want to. She has a quiet, misleading determination. She can wear masks of her own choosing and she can take them off amongst the trusted few. She can smile, and only does so with real intent. And in her fifteen years of life has already proved herself in so many ways. She is a festival of eccentricity.
Lois draws and writes. The paper becomes flooded with shapes and words that form a portrait.
The sketch emerges and Lois shows it to her husband.
“Look at what we’ve produced. Look at everything we’ve won.”
About the Creator
Writer-Performer based in the North of England. A joyous, flawed mess.
Please read my stories and enjoy. And if you can, please leave a tip. Money raised will be used towards funding a one-woman story-telling, comedy show.