SATURDAY, JULY 27, 2024
Andre Velho
A young boy was shouting outside the Sethu Centre. Amir and his family were leaving the Centre to go home. Amir’s parents informed that he was expecting to meet his regular clinician at Sethu but instead found out at the last minute that he would be meeting a different clinician. Nobody guessed that this would be hard for Amir and so no one thought to explain to him that he would be meeting somebody different. Amir was left to figure out why this violation had occurred in the order of his universe. Without knowing it, his trust was breached. Amir had developed an understanding of how things should happen based on how they had always happened, or at least how he remembered them. Now, he had reason to wonder whether he could rely on anyone – or on the world he thought he had understood.
Amir’s reaction highlights a central issue in autism – for the vast majority of autistic people, autism can be best understood as a disability of trust. Autistic people face three kinds of challenges quite significantly – trusting their body, trusting the world around them and most of all, trusting other people.
The theme of World Autism Awareness Day this year is 'Empowering Autistic Voices' which aims at providing more support and power to the individuals with this condition, in order to ensure they lead a meaningful life and even pursue successful careers
Trust in the body
If one were to wake up with a cold, it’s a minor inconvenience. Being down with a cold before, one has the perspective and experience to understand that the cough and runny nose would last for a few days and then one would feel like themselves again. But when an autistic person experiences these same symptoms, they might react with anxiety and fear: What’s going on with me? Why can’t I breathe normally? When will this go away? These responses are similar to how one would respond to a severe illness or injury. Cancer patients often experience similar challenges – much of the stress comes from physical changes that occur, uncertainty about the future and the nagging question ‘Will I ever be able to trust my body again?’
Trust in the world
Families of young children are often asked – ‘What upsets your child?’ Alana’s family shared that if they take a different route to school, she will have a full-blown meltdown in the car. Families often find this baffling – children’s reactions can be disproportionate to the problem. But from Alana’s perspective, her sense of order of how things work had been violated. She came up against a world she can’t trust. Her meltdown was completely out of her control.
Trust in people
Most of us can innately predict the behaviour of other people. This is particularly hard for autistic people, who go through life trying to make sense of other people. Not knowing whom to trust or what a person might do next results in a life of constant hypervigilance. Imagine going through life being constantly wary and skeptical of every person. How can you pay attention to anything else when all of your energy is focused on keeping your guard up?
