The social media mob that was so quick to condemn NZ Breaker Tom Abercrombie and his family need to understand the intense challenges faced by autistic people – especially children – in restricted environments like MIQ, writes Denise Carter-Bennett, an autistic mother of an autistic child.

Last week, media reported that professional basketball player Tom Abercrombie and his family had been granted an exemption to complete the rest of their managed isolation at home. The initial reports highlighted the value and location of the Abercrombies’ Auckland home, along with social media posts by Monique Abercrombie about the condition of the hotel room they had been assigned for their managed isolation stay. On social media, commenters were quick to jump on the story, painting the Abercrombies as spoilt celebrities demanding – and getting – better treatment than others in MIQ.

For me, though, it wasn’t the Abercrombies’ wealth and celebrity that stood out, but another aspect of their story: the phrase two autistic children. As an autistic person myself who is a parent to an autistic child, I felt immediate empathy for the Abercrombie family. And I fully understood why they needed that exemption.

Routine and structure

Autistic people love routine and they love structure. It’s obvious to anyone who knows me or my child that we love a good routine and any deviation from said routine may lead to a meltdown. For non-autistic people (usually referred to as neurotypical or allistic by the autistic community), a change in routine can cause feelings of mild annoyance, but they deal with it and move on. For my son and I, it can ruin our whole day, because we haven’t been able to anticipate how this change affects everything else.

The reason we’re so inflexible about routine and structure is that having a predictable daily life helps us stay calm and manage our anxiety. That inflexibility can come across as obsessive and compulsive – we may only like a certain type of toothpaste, for example, or we may only be able to use a particular brand of utensil, or our shoes have to be organised in a specific manner. This uniformity helps us to navigate the uncertainty of the world around us – a world that has been designed and optimised for neurotypical people.

This rigid adherence to sameness is very noticeable in young autistic children, who find it harder to cope with sudden change, and I imagine it would have been incredibly hard for Tom and Monique Abercrombie’s autistic children to process the change that came with living in managed isolation. I can only envisage how hard Tom and Monique tried to prepare their children for an abrupt change to their routine and tried their best to replicate that routine in a hotel room.

Sensory needs

An important aspect of being autistic is sensory processing issues, where sensory input is processed by our brains as either too intense or too weak. When sensory input goes past our threshold, we experience sensory overload and this usually leads to a meltdown and/or “shutdown”.

Monique Abercrombie mentioned in a tweet – which was later deleted – that she tried to construct a “sensory safe space” for her children with what was available in their hotel room, but it wasn’t working for them as they needed constant quiet and darkness. My own son will create a sensory safe space by closing his curtains, closing his door to block noise, cocooning himself in blankets and getting under his bed. This would not be doable in a hotel room for two weeks.

Some autistic people may have “sensory seeking behaviours” that help them keep calm. My son’s particular sensory seeking behaviours are touching every single surface he can see or picking up an object and chewing on it. This would clearly be an issue in managed isolation due to the risk of Covid-19 virus particles on surfaces.

Sensory processing issues also include the texture, taste and visual appeal of foods, smells, clothing, touch and light. It can be very traumatic for an autistic child to spend extended periods in an environment – like a managed isolation hotel room – which causes them sensory overload or is unable to meet their sensory seeking needs,.

The importance of food

Autistic people tend to like the same type of food at the same time, day after day. It probably sounds monotonous and rigid to neurotypical people, but comes from our need for calm, safety and stability.

If they are anything like my son, the Abercrombies’ autistic children like the same breakfast, lunch and dinner every day. The children may also have other health conditions which necessitate specific types of foods that cannot be provided by hotel catering. While they might have been able to order the food they need from a supermarket delivery service, it’s unlikely they had a microwave to cook it with.

What does an autistic child’s desire for the same food look like? My son can go for a month eating only a particular brand and flavour of frozen macaroni and cheese for dinner; it has to be heated in the microwave for a specific length of time he has calculated which gives it the perfect temperature and texture. Then suddenly he decides he doesn’t want macaroni and cheese for dinner and will change to a specific brand of steak and cheese pies for a month. I was a lot like my son when I was younger, but as an adult I’m a lot more flexible about food. I still get terribly upset when my favourite brand of Greek yoghurt is sold out or my local Hell Pizza forgets to put the bearnaise sauce swirl on my Pandemonium pizza (I will obsess about this for two days), but I fully understand autistic children don’t have my level of flexibility.

I hope this provides some insight into what it is like to be autistic, and particularly what it’s like to be autistic child. Being an autistic parent of an autistic child can be challenging at times – as parenting generally is – and it’s important that neurotypical people are aware of the challenges we face, especially in restricted environments like managed isolation. Neurotypical people need to also consider the impact of the words they use on social media. It hurts when we as autistic people have our needs diminished and dismissed – or are criticised as greedy, selfish and spoilt.