“Do you think she’ll get better, Gill?”
My mother asked that question when she and my father came by for coffee one evening.
All I remember is shaking my head. I am not sure if I was shaking my head to respond to the question or out of sheer shock that such a question had been asked.
To get better, you first have to be sick. Autism is not a sickness. This is our life and we make it work. Some days I get it wrong; some days I get it right.
“But she’s getting worse,” my father commented as he sat across from me in between mouthfuls of freshly dunked biscuit.
Was she? I didn’t think so. Perhaps it was because she refused to come out of her room when they visited. They visit so infrequently—two or three times a year. If she had come out of her room, she most likely would not talk to them.
It’s nothing personal, of course.
My mother sighed loudly and her shoulders dropped as she shuffled the birthday present across the floor to me. That was the reason for their visit: to drop off a birthday present for their granddaughter.
I understood a little of how my mother felt. They had gone to the trouble of selecting a suitable gift, wrapped it, and drove the three miles to our apartment to drop it off. It was the least my daughter could do, to come out of her room, accept the gift, make a big fuss, and do everything else my mother expected, right?
What many fail to grasp is that people with autism deal with things in their own ways, and it is important to allow them the freedom to do so. After all, if we don’t want to do something we find mentally exhausting and emotionally draining, we can choose not to do it, especially if it causes anxiety or pain.
My father is loud—he has a loud laugh that comes all of a sudden. He will throw back his head and this noise will erupt that still makes me jump sometimes, so I can only imagine how that must be for someone with a heightened sense of hearing. Shocking is a word that comes close.
So, she chose to stay in her room, out of the way, quietly and without making a fuss.
Perhaps this is the underlying reason that my parents feel as though she is getting worse. They don’t see her every day, have never witnessed a meltdown, or calmed her down when anxiety takes a firm hold. They have never seen her rocking back and forth or pulling her hair out or laying in bed so quietly, I hold my breath and wait for a sign that her chest is moving. Yes, it gets that bad.
I had to tell them why I thought things were different to them and the explanation is really rather simple.
The last time my parents visited was Christmas Day. They brought presents and had breakfast. We chatted, and Chloe sat quietly in the room with us. She waited until they had gone before she began to cry. The whole experience had been so overwhelming, her first reaction as soon as they left was to break down in tears, and she had no clue why.
As many parents understand already, to see your child(ren) struggling and not be able to identify why is heartbreaking.
She retreated to her bedroom with the door closed firmly behind her; that was her way of telling me to leave her alone.
Eventually, she was able to put words to her emotions. When she told me how she felt, I understood immediately, and from that moment, I could support her better. Information is paramount, don’t you agree?
I was and am proud of my daughter for dealing with the myriad complexities that autism brings. She has taught me so much in the 18 years we have known each other. It is a challenge, but such a worthwhile one. I take what I learn at home into my working environment, extending the help and support to the children with whom I work. I couldn’t do any of that, wouldn’t be the person I am today, if I didn’t have such a courageous daughter. Every day is different, and every day is a challenge.
Every day is a success story.
Gill Marshall is a writer, artist, and photographer. She is a single parent to a daughter with autism. Gill spends her days working with children in a primary school, encouraging them to push the boundaries of their own learning. She is passionate about inclusion and that every child has an equal opportunity to achieve their potentials. Recently, Gill decided to document her adventures as an autis-mum, believing that there are other parents out there who are experiencing similar situations, thoughts, and emotions.
This article was featured in Issue 68 – ASD Strategies in Action