Blog

22.10.2021

Autism Advisory Forum- learning from those with lived experience

Inspiring Scotland supports charity partners working across a number of thematic funds. Part of our work ensuring individuals can lead full and fulfilling lives focuses on making Scotland a more accessible, inclusive and understanding place for autistic people to learn, work and live. Hearing from people with lived experience is central to this work and we spoke with Chris from the Increasing Understanding of Autism team to find out more.

‘Nothing About Us, Without Us!’ is a key message for the autistic community. It means that autistic people should have a respected and equal voice in decisions that affect them – from choices about care, to government policy and so much more. It is this message that guides the Increasing Understanding of Autism programme; our work is governed by the lived experiences of autistic people in Scotland, through the Steering Committee and the Autism Advisory Forum.

The Autism Advisory Forum is made up of over 150 autistic adults from across Scotland. We are steadily working on increasing the representation of diverse groups of autistic people within the forum too, to mirror the wider autistic community in Scotland, particularly engaging with more men, LGBTQ+ people, people of colour and people with additional support needs. The forum launched in 2019, alongside the start of the Increasing Understanding of Autism Programme, and has been developing ever since. Over the summer  and July, 80 new members signed up to the Forum, doubling its size. We are really excited to be able to engage with autistic people on a much larger scale, to get a greater insight into the needs of the community & make our work more representative of autistic people’s experiences.

The Autism Advisory Forum feeds into all aspects of the Increasing Understanding of Autism Programme’s work. Prior to the pandemic, we hosted four regional Advisory Forum meetings facilitated by local autistic led organisations in Inverness, Aberdeen, Glasgow and Edinburgh. We have now combined these regional groups into one large forum, and engage with forum members through zoom meetings and surveys. We recently asked Advisory Forum members to share their opinions on projects that applied for phase 2 funding. 50 members of the forum shared their views, and we took their scores to the steering committee who agreed to fund the 10 projects that the forum members had scored the highest, enabling autistic people to have a direct say on an issue that affected them.

We have also consulted with the forum members to develop the ‘Different Minds. One Scotland’ campaign through phase one, creating a website full of autistic-led content and a highly successful advertising campaign that reflected their lived experiences. We are now working with small groups of forum members to develop the plan for phase two of the campaign, creating new mythbusting videos, written content and a brand new advert.

Accessibility is a key part of the Increasing Understanding of Autism Programme, we are aiming to make Scotland a more accessible, inclusive, and understanding place for autistic people to learn, work and live; this includes participation in the Autism Advisory Forum. We recently ran a recruitment project for the forum and worked to make it as accessible as possible, including creating easy read documents and working with a wide range of organisations to share the call for new forum members, so we could reach as many different autistic people as possible. This included the charities supported by Inspiring Scotland’s autism and learning disabilities funds, Autistic People’s Organisations and charities who support other diverse groups in Scotland. Forum members also have multiple ways to feed back into the programme, be that through surveys, forum meetings or one-to-one sessions. We are continuing to make the Forum more accessible in any way we can, and we are really looking forward to seeing how the forum grows.

The quotes below from members of the Autism Advisory Forum highlight the importance of the forum for those with lived experience:

“I am one of the autistic community involved in the selection of ideas/proposals. I thank Inspiring Scotland for the lengths they have gone to in encouraging the participation of a range of autistic individuals like me, enabling us to be heard, valued and our views acted upon (and that the forums also supported those who could not communicate within the meetings themselves).-Jeanie 

 

“I am absolutely delighted to have been accepted onto the Autism Advisory Forum as part of the Increasing Autism Understanding programme. As an autistic woman I am excited and proud to have the opportunity to participate in the shaping of this crucial work!” – Aimee

 

“It’s important to feel heard and seen in representations of autism and the forum has provided that space and been a respectful and inclusive environment.” – Forum Member

Looking to the future, we hope that we can grow the Autism Advisory Forum further and create more opportunities for autistic people to be changemakers and innovators. The Forum is a key part of our work and it enables and empowers autistic people to directly make change on the issues that affect them. We look forward to continuing this programme, to build a Scotland that understands, values, and celebrates autism and other forms of neurodiversity.

About the Increasing Understanding of Autism Programme.

The Increasing Understanding of Autism Programme is a direct response to the Scottish Government’s 2017 Engagement Exercise, which emphasised the need to raise understanding of autism amongst the non-autistic population. The programme, which is managed by Inspiring Scotland on behalf of Scottish Government consists of a marketing campaign; Different Minds. One Scotland, and funded charity projects. The programme is directed by autistic people’s lived experiences and the funded charities are partners in this programme, helping to influence the direction of the national marketing campaign and promote the campaign at a local level.