It’s Neurodiversity Celebration Week! A worldwide initiative aiming to celebrate different minds and challenge stereotypes and misconceptions about being neurodivergent.
Many of the people we work alongside at Grapevine, including some of our team, are neurodiverse. We help them embrace their power and agency to make change. But we want to get at the root causes of the most difficult problems – not just treat the symptoms.
Neurodiversity Celebration Week
So we also work intensively with systems and services like the NHS and local authorities to understand issues together, shift power and solve the real problem for good.
One example is our Experts by Experience (EbE) Co-Production Service*. This is an opportunity for autistic people or people with a learning disability to influence decision-making and have a say on new services and strategies in Coventry and Warwickshire that have or will have an impact on disabled people.
Getting involved in designing, reviewing and evaluating different services, as well as supporting recruitment of the right people to work for the local authority or in the NHS.
During Neurodiversity Celebration Week, we are celebrating expert by experience Kat’s achievements as part of this work on a project helping the NHS recognise and reduce some of the barriers autistic people face when trying to use mental health services.
“Today I received the news that the 4 P’s has been endorsed as the framework for reasonable adjustments across the Coventry and Warwickshire Integrated Care System (ICS). This means our local NHS services and councils will adopt the framework across all the services in our community, and I am delighted!
“This project has been important to me, as I believe the mindset that autistic people need to change to fit in with society, needs to shift. Instead, let’s think about reasonable adjustments, or small changes, that are easily made to help autistic people feel comfortable, included and valued in our community. This is exactly what the 4 P’s model sets out to achieve.
Kat from Experts By Experience.
“As an autistic adult, being involved in this work has really helped me come to the realisation that my needs and preferences matter. Collaborating with professionals who were so passionate about a person-centred approach that champions positive experiences for autistic people gave me an insight into how things can so easily change if everyone adopts the principles of the 4 P’s.
A graphic showing the 4 Ps Reasonable Adjustment Model co-produced by Kat.
“As an EbE, I contributed by sharing my personal lived experience. I gathered insights from other autistic people in my local community, as well as family members. I looked at the language used in the resources to check I was comfortable that it was neuro affirmative; the language that people use can have a powerful impact on how autistic people feel.
“I am excited about the scope of the 4 P’s framework and hope it can be far reaching. I would love to see it used in schools. Some years back, when my autistic son was really struggling in education and being threatened with exclusion, a behaviour plan was put in place that was rigid and unrealistic. This is where the 4 P’s framework could have turned the whole situation round; exploring my son’s individual needs, being flexible in processes, making the school environment more sensory friendly and having an adaptive approach may have led to positive outcomes for my son.
“I believe it’s so important that neurodivergent people continue co-produce resources and be involved in decision-making that relates to them. Everyone has valuable insights to offer, so if you’re an Expert by Experience, your opinions matter!”
*This project is commissioned by Warwickshire County Council, Coventry City Council and Coventry and Warwickshire Integrated Care Board and contactable at ebe@grapevinecovandwarks.org.
Learning from community organising and co-production
Our EbE Co-Production Service Manager, Suzie Crowter, said: “The 4Ps reasonable adjustments framework will improve health services across Coventry and Warwickshire to make them more accessible for neurodivergent people.
“There is a will to ensure spaces are accessible for neurodivergent people, but people don’t always know how. The 4Ps framework is clear, simple, and gives practical ways for services to become more neurodivergent friendly.”
Suzie has written a blog on ‘sharing your story to make change’ which ties in nicely with Neurodiversity Celebration Week and our work helping neurodivergent people be heard and become part of changes to systems and services that improve the way in which they’re delivered.
Suzie (left) and Sophie from Experts by Experience.
Suzie writes: “While it can be challenging to sit across two different pieces of co-production work that look at different themes, are commissioned in different ways, and use different methods, I do love that I can constantly learn and reflect on how each piece of work could teach me something about the other.
“In both community organising and co-production, stories of our lived experience are shared in order to move someone to action, and to move us closer to the change we want to see. Our stories are powerful, they are the motivating force behind change.
“Unfortunately, there is a lot of bad practice out there when it comes to sharing a personal story in co-production. Too many people with lived experience of accessing services are called upon to share their deepest darkest trauma in a way that is exploitative and not trauma informed.
“Without the right support, without a clear call to action, and without sharing power in the system, storytelling can be exploitative rather than empowering.”
What five key questions does Suzie suggest we ask when telling a personal story while also supporting the individual?
