People with autism face many injustices and difficulties. They are more likely to be unemployed, have a greater risk of mental health problems, and are at increased risk of other health issues. Autistic people will die, on average, 16 years earlier than their peers. A quarter of autistic people will not speak a word during their lives.
Autistica, a charity which supports people with the condition, believed that research, services and policy had failed to address these issues, and that too much effort is focused on a cure.
In contrast, too little time is spent listening to autistic people and find out what it is that they want.
Autistica decided to reinvent itself and pioneer new ways of working with people to address the issue. The charity has changed its organisational mindset and now considers itself a “force for change”. It has changed its staffing model, shifted its fundraising strategy, and shaped new alliances.
But the key change has been its approach. The charity publicly stated an aim to transfer priority-setting power to its community, developed a new methodology for setting research priorities, and sought funding to make it a reality in autism. It has developed a new scientific strategy based on the outcomes, and aims to co-design a new nationwide research network aiming to solve these problems.
The charity has made changes but is far from finished. It wants to triple autism research spending, get autistic people themselves more involved in research, and improve autistic people’s mental health.
CC reg no: 1107350