Weekend Essay: The way we understand autism needs to be reframed

Illustration: Deepak Fernandez

Every year on April 2, the world focuses on raising awareness and acceptance of autistic people. Some call this Autism Awareness Day; others prefer to call it “autism acceptance day”. Some celebrate for the day, others for a week and some for a month. Such days, weeks or months give us the chance to think about and act on increasing understanding, acceptance and awareness of autism. They also engage us in discussion about how we can break down the barriers that stop autistic people from leading their best lives.

Although we have come a long way in our understanding of autism and in creating better awareness and acceptance, the desperate reality is that autistic people all over the world are still more vulnerable than others to being excluded from education, from services or by their peers in social settings. This often leaves them isolated within their educational and wider community. It highlights that we have a long way to go to ensure inclusive and equitable education, employment and belonging for autistic people.

Change will only come about if we start re-framing how we think about autism, because how we think shapes how we act and interact. Autistic advocates and the families of autistic people have been at the forefront of challenging us to re-think how we approach our understanding of autism. We need to hear what they are telling us.

Temple Grandin, an autistic professor of animal science at Colorado State University in the US, once said: “I am different, not less.” With these words, she powerfully articulated that we need to move away from seeing autism as a disorder, disease or an abnormality towards regarding it as a different way of being.

British sociologist Damian Milton, another autistic academic, stresses this point by saying that the way we talk about something frames how we think about ourselves and one another. If we describe autistic people as having “impairments” and “deficits”, we frame the autistic person as a disordered other. This can have a significant impact on the autistic person’s self-esteem. It also means that the people who care for or work with autistic people are likely to see the person as faulty somehow and to focus their efforts on changing the person, or on eliminating or reducing symptoms and behaviour.

Yet autistic people tell us that it is not the autism itself that causes difficulties, but the expectations, interactions and responses they get from others. So, rather than changing the autistic person, this suggests that our focus should be on adapting our own communications, interactions and the environment around the autistic person.

By re-framing autism as a different way of being rather than a disordered way of being, we can start moving from a focus on curing, converting or changing autistic people, to shifting our gaze to how society disables autistic people instead. It does not mean that we don’t take account of the challenges an autistic person and their family might be facing, but that we recognise that we can make a difference by changing how we interact, educate or support autistic people.

Crucial to this endeavour is to engage with how an autistic person experiences the world. Otherwise, we cannot begin to understand what we can do to change things. The late Donna Williams, an autistic author and campaigner, put it so clearly when she said in 1996 “…right from the start, from the time someone came up with the word 'autism', the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced”.

By understanding how an autistic person experiences the world, we can become better at engaging and interacting with autistic language and communication, whether the autistic person has spoken language or not.

Milton coined the term “the double empathy problem”. This highlights that communication breakdowns between autistic and non-autistic people are a two-way issue. Autistic people have trouble understanding or communicating with non-autistic people, but non-autistic people equally have difficulties in understanding autistic people.

To help understand what we can do to engage in a way that improves the lives of autistic people, the Autism Education Trust in England has a panel of young autistic experts that has developed a set of Inclusion Promises. These are based on Eight Principles of Good Autism Practice that my colleagues and I in the Autism Centre for Education and Research developed in collaboration with the Autism Education Trust Partnership in the UK.

The Inclusion Promises provide a set of commitments we can all make to autistic children, young people and adults in our journey towards awareness, acceptance and change for autistic people. The Eight Principles of Good Autism Practice and the Inclusion Promises are also informing practice in the UAE. They are central to the autism strategy at Al Karamah School and training institute, Abu Dhabi’s first specialist autism centre that is dedicated to students with autism, their needs and learning difficulties.

I had the privilege of visiting Al Karamah school in February and was humbled by the way they embed the principles and the Inclusion Promises in every aspect of their work. They also inform the Autism Education Trust’s Making Sense of Autism module that Abu Dhabi’s Department of Education and Knowledge is delivering to educators across the capital. Re-framing autism and disability is also core to the programmes we deliver at our University of Birmingham Dubai campus.

The Inclusion Promises help us by promising the autistic person: to understand what you are good at, what you like doing and when you might need help; to listen to and act upon your ideas about how we can help you if you need it; to listen to and work with the people that know you best; to make sure that we know the best way to support you so that you are always progressing toward your goals; that everyone in your setting will do their best to help you learn and be happy here; to do the best we can to help you make friends and be involved in everything that happens in your setting; to set goals for you that are important to you and which help you see how well you are doing; help you do well by making you feel happy and good about yourself.

World autism awareness and acceptance day gives us the opportunity to reflect on where we are at in honouring such promises. It also highlights the importance of working together to effect change in our thinking and our actions. We need to make sure that autistic people take centre stage in helping us understand what we can do to move towards a more inclusive society, and how we can all become better at celebrating diversity.

Karen Guldberg is Professor of Autism Studies and Director of the Autism Centre for Education and Research (ACER) at University of Birmingham, UK