By Porscia Lam
I brace myself as we start going around the table playing a dinner game, which we do every night to
distract Harry from the discomfort of eating. Tonight, the game Harry has chosen is I Went to the
Shops, a memory game where each person adds an extra item to the list of things bought from the
shops. So far, Harry has chosen donuts, my husband, Paul, has chosen broccoli, and I have chosen
milk. Now it’s little Tessa’s turn. She is excited. She takes a big breath and is about to proudly
announce her grocery item when Harry cuts her off. “Actually, we are going anticlockwise, so Mama
goes again”. There it is, the unfairing.
Harry has a sub-profile of autism know as Pathological Demand Avoidance (PDA). PDA is an
anxiety-based need for autonomy or control, frequently exhibited by avoiding the demands of
everyday living. As a small child, Harry displayed this in terms of refusal of daily tasks, this included
everything from changing his nappy to getting into the car. As an almost seven-year-old, he now
exhibits this by attempting to take control. Sometimes it is aimed at Paul, or me, as a means of
equalising the power indifference, other times it is aimed at the weakest member of the family, as an
easy way to sooth his own anxiety about the world that he is at odds with. Its intensity depends much
on his levels of anxiety throughout the day and phase of life generally. Some days we can push back
and others we cannot.
This is the recurring dilemma of parenting neurotypical and autistic siblings. A regular parent in this
scenario might softly reprimand Harry and give him an explanation about fairness, before ensuring
that the remainder of the game is played clockwise. This is what I want to do, but when I try it
provokes a spike in Harry’s anxiety. Harry’s threat response to a perceived loss of control will, if not
clawed back, spiral into the throwing of food or swiping of things off the table, and eventually a full
meltdown. In other words, a further diversion of even more of our time and attention away from his
little sister.
I make a feeble attempt at keeping the game going clockwise, because it is important for Tessa to
know we see the unfairness. Paul tries to offer his turn to her, but Harry’s insistence of, “The game
has changed direction!” has just taken on a panicked quality. Seeing the situation threaten not to go
his way, he puts down his chicken tender and stands up on his chair. Paul and I hate our lives in this
moment, where all our strategies reek of impotence.
Pandering to my son’s controlling behaviour offends me to the core, but I eventually let the game run
anti-clockwise. I apologise quietly to Tessa and promise her a token if she just “puts up with it”. I also
promise to take one off Harry, just not at this very moment which I know he views as a life-or-death
battle. I worry what this scenario, which plays out in many different forms, will do to Tessa’s
developing interpersonal skills. I tell her, “This is not normal behaviour that you should accept, but
Harry has autism, and right now he doesn’t have the ability to play fairly”. An hour later, when Harry
no longer feels like he is in a fight for his life, I pick up the conversation explain why the next time we
play a game everyone at the table must have a turn. This will not prevent the situation from
happening again, but in our household that is not the benchmark of success, it is the interval between
each of these unfairings.
Low-demand is often recommended for PDA children. Although we do not adopt this as an overall
approach (mainly because we cannot tolerate subjecting ourselves to this demoralising behaviour for
every aspect of our lives), we understand that eating is an exquisitely uncomfortable experience for
Harry, and for this specific activity we allow it. Harry has avoidant restrictive food intake disorder
(ARFID) which means he eats around ten brand specific foods (he can tell even though he never sees
the packaging). He is allowed to roll around under the table, eat on the couch and play unfair dinner
games because this is the only way we can keep him fed. It is a struggle for him to get the nutritional
and calorific content that his growing body needs, so dinners are high-stakes affairs.
As parents we try to be the ones to accommodate Harry’s disability, but his ARFID means that we
never eat out for dinner as a family, and holidays are limited to places where we can access his one
brand of chicken tenders. Try as we might, there are times when Tessa does miss out because of her
brother. As a result we now view “quality family time” differently. For us, this may mean that I eat
dinner with Tessa at the table while Paul and Harry eat al fresco to give Tessa a break from dinner
games. We have taken separate holidays. Tessa and I have had a city hotel stay where, for one
night, it is all about her – her choice of restaurant, entertainment and topic of conversation.
In these stolen moments, we have a grown-up conversation about disability that is much bigger than
any five-year-old should be expected to have. We talk about our hope that Harry will continue making
gains in his therapy that allow our family to do more together. Despite the accommodations that are
asked of little Tessa, we have so far preserved the sibling relationship, and she adores her brother. It
is a reminder that, despite not being autistic, my daughter, too, has a lived experience of autism.
Porscia Lam is a lawyer, debut author and mother of two. Her memoir The Unlocking: An Autism Story ($34.99, The Kind Press) is available in all good
bookstores and online.
