Live experience education

My journey with lived experience knowledge of Autism began with myself as I tried to unravel what having Autism meant. After diagnosis I felt a need to learn about this ‘autism’ I apparently had. Being at university at the time the logical next step in learning about Autism was reading psychology literature. Surely I thought, the psychologists would know about Autism.

I enthusiastically found books about Autism and took to in-depth reading. It was quite a shocking experience. The language used toward us as a group was inherently negative and we were typically framed as ‘disordered’. Apparently how I experienced the world was wrong. How I behaved was wrong. My ‘traits’ as a person were wrong.

It was in many ways quite a harrowing experience to read of oneself as this person with a tragic condition that lead me to having deficient social skills, no ability to empathise or love and ‘restricted’ interests. I couldn’t relate to a lot of what I read and was often left feeling quite confused, upset, depressed and a little angry.

Then I discovered books, blogs and website forums containing actual Autistic people’s thoughts about Autism. While researching literature for a graduate study research project about Autism I finally encountered a different view of Autism. As part of this research I also conducted in-depth interviews with Asperger’s adults. I discovered what Autistic people themselves had to say about Autism contrasted sharply with how parents of Autistic people and professionals in the Autism sector described.

Autistic people themselves described feeling different, not wrong. They described experiencing high levels of empathy toward people which could lead to such intense emotions they effectively shut down. This shut down ‘behaviour’ was observed and lead to an incorrect assumption about what we feel. Autistic people described experiences of heightened or different experiences of the senses to NT people which explained unusual reactions to environment with a different way of interpreting or using language providing very logical reasons for communicating differently.

Through talking with and interacting with other Autistic people I came to understand myself in a more positive way and felt sure the path to true understanding of Autism was to listen to Autistic people. I embarked on meeting, connecting with and listening to as many Autistic people as I could find. I increasingly read more blogs and books written by Autistic people. Although we are not all the same many common themes repeatedly emerged.

Somewhere on my journey with lived experience knowledge I was invited to speak about Autism at an AGM for a local Autism organisation. In my first presentation about Autism I summarised common themes I’d encountered from conversations with other Autistic people. I was told it was rather enlightening for the audience to hear how Autistic people felt from their own perspective. So I continued to give these ‘insider knowledge’ presentations aiming to help those with Autistic people in their lives understand us.

Autism is often argued to be somewhat mysterious and difficult to understand. In reality it’s not that difficult to understand if we take the time to listen to Autistic people with an open mind that Autism is simply a different way of being. Lived experience education is about coming together, as Autistic and NT’s sharing knowledge in an empathetic manner. Come along, join the conversation and let’s help create understanding through valuing the lived experience knowledge of Autistic people.