Working together to remove barriers to post-diagnosis support
Highlights from our post-diagnosis conference, November 2023
On Friday 3 November Ambitious about Autism hosted its first-ever post-diagnosis conference in Woolwich, southeast London. With around 80 people in attendance, it was an opportunity to discuss how to improve support for autistic young people after they have received a diagnosis.
Members of the Ambitious Youth Network shared their personal experiences during a day of learning from each other, collaboration and open dialogue. We also heard from a host of experts representing UCL’s Centre for Research in Autism and Education (CRAE), University College London, University of Bath and Autistica.
It was my pleasure to help bring this event to fruition with the help of colleagues from across our organisation.
Post-diagnostic research and lived experience
I was inspired by the tenacity and resilience of the autistic young people on our panel who spoke about overcoming frustration and a lack of understanding when navigating a confusing post-diagnostic landscape. It was really important to hear these accounts first-hand, which are backed up by our research into post-diagnostic support for autistic young people that was produced in partnership with UCL CRAE and presented on the day.
This research was partly based on an evaluation of our peer support course ‘Understanding You, Discovering You’. The online course was co-designed with autistic young people in direct response to the limited availability or accessibility of post-diagnosis support, especially for those from lower economic or different cultural backgrounds.
Results of our research indicate that a positive autistic identity is associated with better mental health and wellbeing in autistic young people. We’ll take our findings and use them to consider other ways to ensure that all autistic young people, especially those who struggle to access services, get the support they need in the most suitable and appropriate way.
Recommendations for increasing awareness, acceptance and understanding
It was great to hear several of the autistic young panellists explain how valuable our Ambitious Youth Network has been to them. It has offered a lifeline to those experiencing isolation following their diagnosis and boosted positive feelings about their autistic identity.
One network member said:
“Being part of the Youth Network helped me to discover and understand myself.”
“I can’t put it into words how beneficial it’s been, I’ve made so many friends.”
A third summed up the importance of peer support in cultivating a positive autistic identity:
“There’s not a one-size fits all approach to developing a positive self-identity, but being around autistic people and seeing diversity can help boost people’s self-esteem and positive feelings about identity.”
Our learnings from both the research itself and conference speakers include the importance of peer-to-peer support, co-production – where autistic young people are actively involved in determining their support needs – and a person-centred approach to accessing services.
My thanks to the speakers, panellists and attendees for their participation in a day of inspiration, insights and shared purpose to support our autistic young people in realising their ambitions as they transition into adulthood.
There is of course no universal solution to post-diagnosis support, which must be responsive and tailored to the individual who accesses it. The support that people need is not static, it needs to be flexible, fluid and ongoing during and after the diagnostic process. Next steps will involve pulling together what we have learned to consider how we continue our work to advocate for and on behalf of autistic young people and their families.