Over the past couple of months, I have given brief lectures to Social Care and Psychology students on the subject of autism. Below is part two of my lecture notes.
I’m now going to talk to you about my personal theory of autism.
While I was home-schooling Ian, I spent many wakeful nights thinking about autism and trying to find a way of explaining how I see it. I knew autism but I also knew there was something else, a kernel of something precious and individual, and that if you could connect with it, extraordinary things might happen.
Because this kernel within was the working mind.
I call it my Jam Donut Theory, and it looks like this —
When the child is young, the ‘dough’ is fresh and soft. Malleable. With enough work, inroads can be made through the ‘dough’ to the working mind within. If you work hard enough, for long enough, these inroads can become permanent channels of access —
And, if you get it right, the working mind within may expand and reach back to meet you—
As the child ages, the ‘dough’ hardens, becomes denser, and harder to get through. But the working mind within is still there, still sparking, possibly even looking for a way out. I do not like to think about what happens when it gets ignored…
Let me tell you a short story which illustrates what I mean about the working mind.
Not that long ago, my husband and I attended a party given by the group that cater for Ian every day. It was a busy event. Several other groups were also attending, so there were young adults with all different kinds of disabilities. It was noisy and chaotic and wonderful.
One young lass, let’s call her Mary, went around the room shaking everyone’s hand and asking “What’s your name?” That was her ‘thing’. Round and round she went, and when she got to me, I took her soft hand gently in mine and told her my name, speaking clearly for her to catch it. Off she went again, round the room. “What’s your name? What’s your name?” I followed her progress.
Mary came back to me, took my hand and again asked me her question. I looked straight into her eyes and said “You know my name. I told you. Can you remember it?”
Mary went very still.
I stood quietly and waited.
After many long empty seconds, she frowned and said “Fiona. Your name’s Fiona.”
I smiled at her. “Yes,” I said. “Well done! You remembered.”
After that, Mary wouldn’t leave me alone. She clung like a limpet. My new BFF. Her mother became slightly embarrassed by her behaviour; the carers who knew her were casting us curious glances. I didn’t mind. I was in the zone then, and Mary was delightful.
However, she was manoeuvred away from me, and shortly after that we had to leave.
It was only on the journey home, thinking about what had happened, that I felt really sad. I realised that potentially for the first time in her life, someone had discounted the notion of everything she couldn’t do, and credited her with a working mind.
And clinging to me like a limpet was her way of saying “Thank you”.
I take the class back to the jam donut —
and remind them that behaviour is just behaviour. It is not the core of who that person is. And it is important to remember that although the ‘dough’ may not age, the working mind does. My son may behave like a strange four-year-old, but he’s twenty. You cannot treat him like he’s four because he’s not. You cannot keep putting the same infantile tasks in front of him just because he behaves in a way that makes you think they may be ‘age-appropriate’. They’re not. He’s seen them before, and he’s bored.
Challenge the working mind, or stop wasting his time.
end of part two