Leeds Autism AIM: #PowerOfPartnership

The Leeds Autism AIM service, part of the Advonet Group, was co-developed in 2015 with autistic adults in response to local need after an initial three-year project. Our initial consultations mirrored national work, with clear barriers of access leading to health inequalities, particularly for autistic adults without learning disabilities who fell between gaps in services.

Evidence shows that autistic people have often struggled to access appropriate advocacy support despite these inequalities and experiencing barriers putting forward their needs and wishes.

National reports show there have been little improvements, even 10 years after the 2009 Autism Act was signed into law:

• Only 8% of autistic adults felt things had improved

• 76% reached out for mental health support but did not access

• “Deeply concerning” lack of adult social care support

• 71% not getting the support they needed and only 4% had enough support after diagnosis

Co-developed service

The service was developed in partnership with autistic adults from the start and the majority of AIM’s staff team are autistic themselves. We knew that resources were tight and that we did not want to be an isolated “bubble” of autistic support. It had an approach based on the advocacy principles of increasing the voice of this group and working with others in reducing barriers and increasing access to wider services.

We knew that services struggled to engage with autistic people and wanted to improve how they met their needs. We built a much bigger offer than our limited resources could allow by approaching other services to work with us. We were able to offer increased engagement to partners to enable their links with autistic people.

We enabled partner to provide regular specialist additional input direct to our hub services in areas they identified as needed. These include Leeds City Council, Citizens Advice, DWP employment advice, Leeds Autism Diagnostic Service (LADS), Carers Leeds, 4Neurodiversity and Community Mental Health Services.

In addition, we were able to increase links to a wide range of other support needed by enabling workshops and/or consultations with, local hospitals and health leads, Healthwatch Leeds, cancer prevention, police, housing, womens groups, employment, transitions and a wide range of mental health services among many others.

Partnership-focused

We developed a real partnership-focused service that now works with over 500 people a year, using an advocacy approach to help them get access to the information and support they need. It also involved providing peer support, drop ins, workshops, groups and resources to help them self- manage and self-advocate. We also developed a pilot autistic led post diagnostic support provision.

AIM have co-produced toolkits for autistic people and self-advocacy resources to increase confidence and skills to put forward their needs. We knew these would not work in isolation, so we have developed training and resources for people and services that may support them, designed by autistic people themselves.

They enabled an autistic voice on many local forums, putting this more at the centre of health and care services to directly influence service change.

These include embedding many improvements in our local hospitals for autistic people, providing training and consultation to mental health services and identifying changes needed, as well as with housing, DWP, third sector organisations and many others.

Work during COVID-19

During the COVID-19 period, they have taken the opportunity to increase partnership work, addressing identified need for adjustments in mental health, housing and health and digital access and enabling consultations with autistic people on future local and regional plans in health and care. They co-developed COVID-19 toolkits for autistic people and professionals that has been used nationally as well as locally and a range of remote groups and one-to-one peer support.

We have seen how the Power of Partnership using an advocacy approach can lead to real and lasting change, if we link to the strengths of those we support as well as services that want to make changes happen for those with the greatest inequalities. Advocacy services are in a unique position to enable this due to their independence, tools for empowerment and strong links with their client groups and wider services.

Wendy Cork, Advocacy Development and Partnership Director