Understanding and giving voice to people on the autism spectrum about their everyday life experiences is key to Aspect’s work in raising awareness, promoting discussion, and also provides valuable information for designing and delivering autism services that meet the needs of the autistic and autism communities.
How can we enable people on the autism spectrum to have their say about the awareness, services and support they need to achieve their goals and aspirations? How can we use this knowledge to inform the development of Aspect's services?
In an Australian first, in 2011, Aspect researchers conducted the We Belong study, surveying a sample of Australian adults on the autism spectrum and their families and carers about their experiences, needs and aspirations across a broad range of life domains.
Building on the We Belong study, which identified that adolescence for those on the autism spectrum was defined by interrupted school pathways, relentless bullying, discrimination and unmet education needs, in 2012-2013, Aspect researchers then conducted the We Belong Too study. This second study surveyed a sample of Australian adolescents on the autism spectrum (without intellectual disability) and their parents about their lived experiences, needs and service requirements. This was the first time that adolescents on the autism spectrum had been directly surveyed in a study of this scale, along with their parents, to create a statistically sound profile of the life experiences, aspirations and future support needs of this growing group of young Australians
What we learnt
The We Belong study showed very clearly that adults on the autism spectrum have the same goals and aspirations, including being part of everyday life, as do other Australians. They want fulfilling employment, opportunities to have a range of successful social relationships, and to pursue their leisure interests, including by participating and contributing to local community activities, but that the awareness, understanding, and services needed to support them in realising these goals and aspirations are lacking.
We Belong Too confirmed that many adolescents on the autism spectrum struggle with bullying, mental health issues and the challenges of schooling. Less than half reported having good friends; and despite the young people themselves being optimistic about their future, their parents were not so confident, and most of their parents did not believe educators are well-informed about autism.
Making a difference
These studies gave adults and adolescents on the autism spectrum an opportunity to have their say about the awareness, services and support they need to achieve their goals and aspirations, and have since informed the development of Aspect’s services.
The project was extended in 2016 with the publication of the book Shining a Light on the Autism Spectrum: Experiences and Aspirations of Adults. In a unique collaboration between Aspect researchers and adults on the autism spectrum, the book illustrates the original data from the We Belong study with personal stories and case studies written by adults on the autism spectrum to present their experiences, aspirations and needs in their own words.
Aspect Research Centre for Autism Practice is now planning a new research project, Ageing on the autism spectrum, to identify the service needs of older adults on the autism spectrum as they age.
Dr Debra Costley, former National Director, Aspect Practice; Associate Professor, School of Education, University Nottingham
Susannah Baldwin, former Research Officer, Aspect
Dr Susan Bruck, ARCAP
Kaaren Haas, ARCAP