Recently Oxford Trust NHS foundation trust has released the draft version of their Autism Peer Support Worker Capability Framework. The NHS states that the purpose of the framework is
“To assist health and care organisations across the country who are developing new NHS autism services to understand how peer support roles can add value to their teams and services.”
Oxford Health was commissioned to design the capability framework to assist employers in understanding what Autism Peer Support Workers need skills and abilities. Oxford Health states they have worked in partnership with Autism Oxford UK, Autism Champions, Sussex Ehlers-Danlos Syndromes Hypermobility Disorders (SEDS) CIC, Resolve, National Autistic Society, and a co-production group of experts by experience when creating the framework.
Autistic people still experience significant marginalisation in our society (especially in services), and peer support can be incredibly empowering for individuals. However, what is the impact of the framework on autistic people who come into contact NHS services? And for the autistic people recruited as peer support workers? Let's break this down.
So as an autistic peer supporter, what are my thoughts on this framework?
On a surface level, the draft seems to have most of the first steps right in terms of using identity-first language and abolishing the use of functioning labels. Still, as many of us know, this won't necessarily mean that the framework will automatically create a utopia for autistic people.
I am also glad to see that there was co-production with experts by experience for the framework. However, I hope that the autistic experts by experience were not spoken over or valued less than professionals when creating the framework, which can often be the case with the power dynamics within the system. I also hope that the experts by experience have engaged with peer support, either by being a peer supporter or having received peer support before. As learning from autistic people's experiences who have engaged in peer support is vital for creating meaningful change.
I bring up these power dynamics because of one fundamental flaw in the draft; you do not have to be autistic to provide autistic peer support according to the framework. Peer support is about having similar lived experiences on some level, so having peer supporters for autistic people means only autistic people can provide autism peer support, not those adjacent to us in our daily lives. As historically, people adjacent to us have spoken over us and not allowing us to have our voices heard. So if non-autistic 'autism peer supporters' are recruited, the NHS is repeating mistakes pointed out countless times.
Although there is a lot of emphasis on understanding autism in the draft (which is essential), there is still some room for improvement. For example, there is a lack of distinction that autism is a different neurotype (and not a mental health condition) and that a medical view of autism is still somewhat influencing the draft's description of autism, which I see as problematic.
Another concern that has been raised by the community (one I share too) is the lack of information about neurodiversity and the double empathy problem. The 'double empathy problem' states that the different ways autistic and non-autistic people communicate can lead to a misunderstanding of each other (rather than autistic people automatically having deficits in social communication).
When you consider what happened to Oliver McGowen, whose natural autistic behaviours were deemed as needing antipsychotic medication and detaining under the mental health act, which ultimately led to his death, it is incredibly neglectful to see how the double empathy problem was excluded from the draft framework. A better understanding of autistic differences in services could prevent further deaths.
As expected with an NHS document, there are issues of still using concepts that can be harmful to autistic people, such as "Behaviour that challenges". The professional see this phrase as a more "respectful" way now to describe an autistic person in distress, but I still feel it blames the autistic person just as "challenging behaviour" does. It continues the cultural norm in services of dehumanising autistic people.
One thing that the draft also fails to acknowledge is broader systemic issues. One example is
"promote health, diet, exercise."
Many leisure centres are inaccessible to autistic people due to the sensory environment. Also, many autistic people find it impossible to follow a diet that the NHS considers 'healthy' due to eating disorders and sensory issues with food. If there is no appreciation for these factors, 'promoting health, diet, exercise' with neurotypical expectations will do more harm than good. So although the Autism Peer Support Worker Capability Framework may have been created with good intentions, broader changes are required for the draft framework to create meaningful change for autistic people.
Additionally, autistic people have raised concerns that the Autism Peer Support Worker Capability Framework is not accessible, meaning this may exclude some autistic people from being able to provide feedback. Again, this needs to be changed so every autistic person can understand and be part of the conversation.
What changes are needed?
Although the framework seems to have been created by well-meaning professionals, the following changes are required.
● Only autistic people are recruited for autism peer support roles.
● Describe autism through a pro-neurodiversity lens over a medical lens.
● Inclusion of the double empathy problem in NHS autism peer support.
● Removal of attitudes that label autistic behaviours as "Behaviour that challenges."
● Appreciation for broader systematic issues that affect autistic people's daily lives.
● Extending the deadline for feedback, so a more accessible version of the framework can be created, and autistic people have sufficient time to respond.
Want to discuss Autism Peer Support Worker Capability Framework with peers? then Click here to join our online community and neurodivergent peer support workers group.