Ambitiously co-producing mental health support

Date of publication: 23 November 2020

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‍During lockdown 1.0, isolation and mental health were some of the biggest issues being experienced by the autistic young people in the Ambitious about Autism participation programme. Instead of letting this situation overwhelm them they wanted to do something about it - something that brought together the network that the participation team has developed. This started with peer support sessions over Zoom as a way to connect when we were all told to stay at home in March. Since March of this year we have run 119 peer support sessions which amounts to 298 and a half hours or 12 and a half days straight of support for autistic young people. Which sounds like a lot when you think about it, especially when you realise this was squeezed into eight and a half months! Sessions and topics fit the needs of autistic young people, they happen at consistent times each week, have the same format each time and adapted to become ever more accessible. These meetings provided the young people with friendship and the chance to socialise despite the isolation of the lockdown and gave the opportunity to learn and even be inspired by peers who might have similar experiences, interests, and passions. Even more importantly, it gave them the space to be heard.

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“I don't feel as though I’m on my own in struggling in this. It is also a healthy distraction from being stuck at home all day every day.” - Anonymous

‍“I joined the sessions in late March and immediately felt welcomed. No matter what mood I was in or what external situations I was facing, chatting to other young people and doing fun activities made me completely forget about the rest of the world.” - Vera

It soon became clear that peer support, no matter how much we did, would not be enough to fill the gaps the pandemic created. The young people wanted professionals to be ready for the potential ‘mental health tsunami’ that was coming. Importantly they wanted professionals to be ready to support the needs of autistic young people, so we sought funding for a project to develop their ideas. The funding ended up enabling further peer support sessions, which were utilised to not only produce training about mental health, but also to enable autistic young people to be paid to co-deliver such training through the webinars to a vast range of professionals.

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By developing a previously co-produced project - Know Your Normal, a collaboration between Ambitious about Autism’s Youth Council and researchers at UCL Centre for Research in Autism and Education, they could build upon their previous work and introduce new young people to resources that could support them. In the development of the training, the peer support network grew and became a space that was even more inclusive and positive. People felt comfortable speaking about their mental health journey and advocating for what should be included. Power was shifted entirely in favour of the autistic young people as to how they wished to be spoken about and represented in training. The feeling of empowerment and ‘making a change’ was incredibly impactful on many of the young people taking part.

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“I appreciated everyone sharing their experiences so much, because it taught me that I’m not alone, and that something positive can come out of (unfortunately) some of our very negative experiences.” - Vera

‍“Being part of the Know Your Normal project has truly been an amazing experience for me. Actually feeling part of something tangible that could make a real change in the world was so incredibly empowering; getting to share my story, and, even better, receiving actual feedback from people and knowing that what I was saying had impact, had worth….it has made me so determined to fight for more change and improve things for autistic people struggling with their mental health. I want to use my negative experiences and this project showed me I can be heard, which is something I haven’t understood before” - Saffron

‍“By co-producing the Know Your Normal webinars, I was able to advocate and raise awareness about autism, something that means a lot to me. The structure and the support put in place [by the participation and training teams] meant that I was able to deliver the webinar in a comfortable way and still express everything I wanted to.” - Emily M

While we continue to face the unknown and changing environment brought about by the pandemic, our peer support sessions remain in place. The young people continue to challenge, inspire, motivate, encourage and provide comfort to each other, benefiting the group but also leading to positive changes with a wider impact. We’ve adapted to the ways a pandemic can challenge mental health and continue to co-produce the changes that autistic young people wish to see.

Notes:

Ambitious about Autism is the national charity for autistic children and young people. The participation team works with autistic young people aged 16-25 on projects led by the autistic young people themselves. Recent projects have included co-producing resources for inclusive youth groups called Include Autism, researching post-16 education, examining the lack of post-diagnostic support and helping museums become more inclusive and inviting to those with neuro-diverse conditions.