The importance of peer support in the Autistic community
15/02/2022
Cloverleaf colleague blog.
Author: Daniel Hall, Service Manager for Lancashire Peer & Group Advocacy Services
Autistic people die much younger than neurotypical people. A shocking revelation to read, but something autistic people and families of autistic people have long known from personal experience and which a growing number of studies across the globe is proving is, sadly, the case.
A Swedish study by Karolinska Institutet - a medical university (ki.se) found that autistic people with a learning disability were forty times more likely to die early than neurotypical people - at an average age of just 54. Autistic people without a learning disability were also found to die on average 16 years younger than neurotypical people and were nine times more likely to die from suicide in comparison.
These are truly shocking statistics. Here in the UK, it was agreed in June 2021 that autistic people without a learning disability would be included in LeDeR reviews. The LeDeR has been reviewing the deaths of people with a learning disability since 2015. It has found evidence of people with learning disabilities dying 23 years (men) and 27 years (women) younger than people without learning disabilities from preventable conditions such as pneumonia.
It is expected that when the latest study is published this year [2022] it will show further data that autistic people in the UK die younger than neurotypical people.
Taking all of this into account, it is easy to see just why peer support and self-advocacy provide such a vital lifeline to those most at risk in our communities.
What is peer support and what impact does it have?
Peer support is when people with similar lived experiences come together to support each other.
So how can it help?
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Autistic people can feel misunderstood by neurotypical people. Connecting with other autistic people with similar personal experiences can foster meaningful connections and a deeper sense of understanding and empathy which can reduce loneliness and isolation.
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Bringing autistic people together so there is a collective voice to speak up about the inequalities autistic people face in healthcare and in wider society.
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People are able to share their experiences both good and bad, which helps people realise they are not alone in their experiences.
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Educating people about their rights. For example, letting someone know they have a right to ask for reasonable adjustments or a right to have a medication review.
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Sharing information such as where to go for support with an issue like a complaint about a service.
Peer support is incredibly powerful and can often be overlooked when organisations are looking at how to address inequalities. Who could be better placed to understand the barriers people face than autistic people themselves?
That is why peer support, such as that delivered by Cloverleaf in Lancashire, can and should be an integral part of any plan looking at how to address inequalities autistic people face.
Daniel Hall is the Service Manager for our Lancashire Autism Peer and Self-Advocacy Service. The group meets regularly across the local area and its team is on hand to offer support, guidance, and advice to adults with Autism (including those waiting for a diagnosis) by:
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Facilitating peer and self-advocacy meetings in local areas around Lancashire
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Working together to improve services
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Raising awareness about autism and mental health needs across Lancashire
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Supporting the autism partnership board and Lancashire Wellbeing Partnership (for mental health) to meet and take forward agreed actions that raise awareness and ensure people’s voices are heard.
To find out more about the team and the work they do, please visit: Lancashire Peer & Group Advocacy Services (CLASS) (cloverleaf-advocacy.co.uk) or email a.lancs@cloverleaf-advocacy.co.uk
You can also follow the peer support group on Facebook.