“Adélie, chinstrap, emperor, gentoo. Adélie, chinstrap, emperor, gentoo…”. Those of you who watched “Atypical”, the Netflix TV series, will know exactly what these names mean. Not everyone knows that these are the names of the four species of penguins found in Antarctica. Adélie penguins can be recognised because of their short beaks, while chinstrap penguins are the smallest ones. Emperor penguins are the largest species- out of the fifteen species present on our planet- but gentoo penguins are the fastest and most skilled swimmers. For Sam- the high-functioning autistic boy and protagonist of the series- reciting these names is the only way to calm down in a stressful situation, which includes contexts where a new change is implemented. In fact Sam, like the vast majority of people affected by autism spectrum disorder, rejects anything that might represent change- he always pushes to take the same road, eat the same food and follow the same habits.
In light of this it is no surprise that autism spectrum disorder sufferers and their families found it particularly difficult to cope with the Covid-19 pandemic, which caused a drastic change in routine, with the interruption of in-person therapy and the reduction of opportunities for social interaction. However, it is not just these types of changes that cause discomfort, anxiety and worry. People suffering from autism spectrum disorder perceive life as a single one-way track and whenever further trajectories are added to it they do not know what to do. In some cases, change can destabilise the individual, particularly low-functioning autistic subjects, with very significant repercussions. Nonetheless, this does not mean that all change should always be avoided. For most sufferers it can be beneficial to start an educational journey at an early age, in order to help them gain more flexibility and a better predisposition towards change. We discussed this with Luigi Mazzone, the coordinator of the Operational Unit of Child Neuropsychiatry at the Tor Vergata University Polyclinic- that recently started to vaccinate the first autism spectrum disorder patients against Covid-19 – and Maurizio Bonati, the director of the Maternal and Child Healthcare Unit of the Mario Negri Research Based Hospital (IRCCS) in Milan and author of “Through the screen. Cinema and autism during development”.
Why do people suffering from autism spectrum disorder struggle to accept and cope with change?
LM Autism spectrum disorder sufferers often display cognitive rigidity so resistance to change is one of their peculiarities. They have a very rigid forma mentis that leads to poor flexibility, even around daily activities. Anything that might entail a change in routine, in the usual activities or any other aspect of the day has the potential to destabilise autistic subjects, both emotionally and behaviourally. Obviously that can have other repercussions. For this reason it is beneficial to prepare the autistic subjects, even with a series of visual tools, to help them anticipate what is about to happen and what changes might impact their lives.
MB Some symptoms can be more or less significant for patients, and the perception of their severity changes depending on whether you are their caregiver or an external observer and on whether the subject has low or high-functioning autism. According to the collective imagery people affected by autism spectrum disorder that do not have any cognitive disability- thus roughly 70% of sufferers- display impaired social and communication skills that are linked to limited interests and stereotypical behaviours. That would be the case in comparison to what is considered to be the standard level of “wellbeing”, which is subjective hence variable. Repetitive and restrictive behaviours can be the most isolating symptoms of the condition, depending on their severity. Autistic subjects have a strong desire for rigid routines and feel extremely bothered whenever there are any deviations from them. Examples of these are repeated movements, such as flapping hands, or the intense focus on specific parts of an object. Subjects can also express themselves and respond to habitual questions but are unable to hold a conversation. When it comes to hobbies/interests it is usually difficult to move from one activity to the other. When there is significant verbal impairment then subjects display initiative and socially interact in connection with limited hobbies/interests. Repetitive behaviours interfere with the subjects’ functioning in various contexts of daily life. It is difficult to implement any change because it is only parents or society that perceive them as being essential or better, while the subject does not.
“Autism spectrum disorder sufferers often display cognitive rigidity so resistance to change is one of their peculiarities.” – Luigi Mazzone
What is the best way to cope with change?
LM There is no treatment as such to help cope with change, but there are a series of strategies- mainly behavioural or cognitive behavioural- that can be implemented with an autistic person. Obviously you should first determine whether the individual in question has high or low-functioning autism. If the person has a good degree of cognitive functions it might be sufficient to verbally explain what is about to happen and how it will work. Instead, with a low-functioning autistic person one option would be to use images or pictures that show where they are going and what is about to happen. These are not treatments per se but rather helpful tools to support people with autism.
MB Therapeutic interventions should evolve and change in relation to the evolution and changes of the condition. The more complex the clinical presentation is the more it is necessary to identify intermediate objectives, each with its own potential set of interventions intended to help with social interactions, to improve communication and to widen the interests of the patients, therefore making their behaviour more flexible. Furthermore there should be training for parents, which actively engages them, and the constant adjustment of the entire environment, in order to help families interact with their children, to promote their development and to improve the parents’ satisfaction, empowerment and emotional wellbeing. In addition to supporting parents it would be crucial to also involve the whole community of the sufferer, although that is more difficult to achieve and it looks like families are and will continue to be alone in this.
“It is difficult to implement any change because it is only parents or society that perceive them as being essential or better, while the subject does not.” – Maurizio Bonati
Is it better to try to avoid any sudden change or to help autistic people cope with them?
LM It’s important to keep in mind the age of the subject because often, if he/she is an independent person in society, change would initially just affect them individually. Instead, if the person in question has care needs and requires a caregiver then change will often impact their whole family context instead of just them. Therefore the concept of change can have a cascade of consequences, which are amplified for autistic subjects compared to people who are functioning normally.
MB Psycho-educational interventions are intended to modify the patients’ overall behaviour in order to help them become more attuned to daily tasks (such as food intake, personal hygiene and the ability to get dressed) while trying to reduce dysfunctional behaviours. A central aspect of any intervention is teaching behavioural, cognitive and emotional skills that help to modify thoughts and behaviours, which in turn trigger negative emotional states such as anxiety, depression and anger. I would say that that should be the objective of any type of parenting, even for non-autistic children, as everyone can benefit from it, not just autistic subjects. The educational journey takes time, for children and parents or students and teachers alike.
“I recite the four species of Antarctic penguins. It helps. You should try it next time you think you’re dying. Except if you really are dying, it won’t help at all.”
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