We need to listen

Oxford University (photo by TEDizen, Flickr Creative Commons)
by Liz Pellicano

 

When I was a young academic at Oxford University, I was lucky enough to work with several autistic students, helping them to negotiate the complexities of that ancient institution and of college life more generally. Every one of them touched my life – and influenced my work – in profound and distinct ways.

One of the students I met with regularly was a young woman, a student from the US, who had come to Oxford to read history. Abi* was excited about the prospects of being an Oxford scholar and the opportunities this might bring. I thoroughly enjoyed our conversations. Abi was extremely impressive – very bright, motivated and enthused by her studies and so deserving to be at Oxford. But as the term progressed, I became increasingly unsettled by Abi’s stories of life as a student.

Abi was living within a shared house with other visiting students from the US. During our chats, we had talked about Abi’s strong desire for neither her peers nor her College tutors to know about her autism. She feared that her opinions, her perspectives, her views would be disregarded because she was autistic. I of course respected her wishes but suggested nevertheless that this probably wouldn’t be the case, that the other students would indeed respect her thoughts and opinions irrespective of her diagnosis.

It turned out that I was wrong and Abi was completely right. Her housemates had gradually begun to notice that some of her behaviours were unusual – the unconscious twiddling of her fingers, especially when she was anxious, or her sometimes overly formal phrases of speech. She had desperately wanted acceptance and was doing everything possible to fit in.

They had begun to ask her direct – and highly insensitive – questions about her behaviours, and eventually her autism, which had made Abi increasingly worried about her differences and their implications. Listening to Abi talk about the way others were perceiving – and often misperceiving – her was incredibly upsetting for both of us. It was as if their lay stereotyped knowledge of autism – individuals who are “lacking” in empathy and the ability to think about their own and others’ thoughts and feelings – gave them license to treat Abi as second rate. In fact, they were acting precisely as she had predicted, blatantly disregarding her as a person and ultimately her views and wishes.

But it wasn’t her efforts at all that had been lacking. It was those of her fellow, non-autistic students. They were the ones who showed little means of responding appropriately and sensitively to others’ needs. It was they who seemed to be lacking in humanity.

I felt deeply embarrassed, ashamed and increasingly disappointed by what I heard week on week. I was comforted only by the fact that Abi was learning to deal with her experiences. She was becoming increasingly resilient in the process. But the potential costs of this were – and are – unclear.

Working with Abi and others on the spectrum has taught me the importance of recognition. Autistic individuals – just like anyone else – need to be understood, accepted and celebrated for what they bring to the world. Ours is a far richer world for the diversity that is in it. Of that there is no doubt. But each of us can only make our contribution to improving our common life when we are accepted for who we are.

* Name has been changed