Using Lived Experiences to Increase Global Awareness About Autism

Paul Micallef and Emma Donaldson

Determined to draw attention to the specific needs of people living with autism, Emma Donaldson and her team at Torrens University Australia developed the Voices of Autism MOOC (Massive Open Online Course), the first of its kind to be co-designed and co-delivered by people living with autism. 

Emma Donaldson has spent her entire career working on disability, mental health, and inclusion challenges. A faculty member at Torrens University Australia since 2016 and the co-chair on the National Mental Health Consumer and Carer Forum, Emma is a firm believer in creating academic content by using a co-design approach capturing and incorporating lived experiences from vulnerable communities to create educational change.  

“It is really important that we listen and learn from those who experience conditions such as autism and mental-ill health,” said Emma. “This means creating educational materials using their voices and stories, rather than us talking for them.” 

While interviewing individuals and their families with autism to prepare case studies and lectures for her students, Emma began to notice that many topics – stereotypes, stigmas, challenges finding employment, and access to education – continued to come up. She and her team decided that this information needed to be shared, and it needed to be shared by those who have experienced it firsthand.  

Thus, Emma and the education team, including faculty members Professor Mick Grimley, Professor Tim Moss, and Eoghan Hogan, decided to launch a MOOC called Voices of Autism, co-created, designed, and delivered by individuals living with autism. The first of its kind, Voices of Autism gives participants a real understanding of autism from the perspective of the person living with it, helping to uncover real life challenges for them and their families. It utilizes a “person first” approach, where participants are challenged to put themselves in the place of the person with autism, and to consider solutions to a wide range of situations. 

Paul Micallef, one of the co-designers of the course, recently said: “As a person on the autism spectrum, I’ve always found it challenging to get people to understand things from my perspective. For others, it may sound too strange or unbelievable. By sharing our stories and our approach to life situations, I believe we can create an impact on people’s understanding of our day-to-day lived experiences and bring real and positive change for people living with autism.” 

To date, more than 12,000 people from 88 countries have enrolled in this course through Torrens University Australia, completely free of charge. The MOOC had a 49% retention rate, a significant accomplishment when compared to the typical average retention rate of 5-7% for MOOCs. The MOOC has received accolades from the international mental health community, and Emma was recently invited to present on the impact of the MOOC at the 5th World Autism Organization International Congress (WAO2018) in Houston, Texas, USA. Emma, and the education team, and the various technology and support teams from Torrens University Australia who made this MOOC possible are proud of its success, and are excited to continue developing co-designed MOOCs to change people’s perspective about all mental health conditions.