Autism & Diabetes

 

In this blog, I will be writing about my personal crusade aiming to help autistic people better manage diabetes.  In this article, I will summarise progress that I have made alongside Rotary Direct Members and our diabetes partners: Solent Diabetes Association, Diabetes Research and Wellness Foundation and Diabetes UK.

In September and October, DRWF commissioned Autek to run a consultation where we spoke with over 25 autistic people who had experiences of diabetes and learnt more from them about the challenges they face. 

In October, I presented some of our findings to a packed hall at the Diabetes Professional Care conference in London and got a lot of positive feedback.  From the questions at the Q&A I was particularly interested in what professionals can do to support patients who they suspect are neurodivergent, but don’t identify as such.  Of course, the approach should be the same, just avoiding neurodivergence language.

In December we completed our consultation report and shared it with professionals to get endorsement and feedback.  A few select items of feedback that we received:

Diabetes Specialist Nurses said: “This report has been a long time coming and has given a voice for expert patients who generally feel silenced and unable to articulate their diabetes experience.“

Association of British Clinical Diabetologists (ABCD), on the report said: “The committee welcome this report and its findings, and we look forward to using the resources they produce and the findings of their research.”

On World Autism Day, 2nd April, DRWF published the report with a social media launch.  The report can be found here: https://www.drwf.org.uk/news-and-events/news/talking-to-people-with-diabetes-and-autism-to-understand-their-specialist-care-needs/

From the many comments that the post generated:

“This is such an important area that doesn’t get talked about enough. Managing diabetes is already complex, and when communication or sensory challenges are part of it as well, it adds a whole different layer.”

“Wow, we have 2 t1 children, both are autistic. We have recently found out that PDA was playing a huge part in blood sugar control.”

Because of our consultation and its findings that social settings are challenging for autistic people, we have set up, with Diabetes UK, a peer support group for autistic people in the Portsmouth Area.  Janice, a direct member of Rotary in Great Britain & Ireland and myself have run these monthly sessions since January.  They have already led to much increased understanding and changes around management for the autistic people who attend.  This group is growing and shedding new light in how best to communicate complex diabetes related topics in ways that autistic people understand.  Noting that this mainly comes through peer support rather than professional brilliance!

On World Autism Day, Diabetes UK posted about the support group with excellent engagement, including 163 shares and 92 comments on Facebook, over 8,000 people reached including a lot of non-followers, and on Linked in a massive 58% engagement rate (compared to DUK average of 3.5%).  Interestingly, most of the comments related to Type 1 diabetes and autism which is something that is particularly challenging for families and carers to manage.

“Yes we need to know the correlations of type 1, autism and ADHD…. And their complexities. We’ve learnt most of them the hard way for our daughter…. Much more info needs to be shared I am glad you are talking about this”

In addition to this post, Diabetes UK created an internal article for staff to become more aware of this topic, and Autek are in discussion with their Comms team about how to move this forward.

Finally, at the end of Autism Awareness Month, DRWF recorded a podcast involving Steve Bond from Autek and the legend that is Professor Naresh Kanumilli, diabetes expert and founder of the autism social enterprise Vision Beyond Autism.  The recording for this podcase and a detailed article can be found here:    https://www.drwf.org.uk/news-and-events/news/drwf-podcast-nothing-was-helping-me-why-we-are-raising-awareness-about-diabetes-and-autism/

This is not something that is going to go away.  Autistic people deserve better support for diabetes (noting that in many cases it isn’t just autism & diabetes, but made more complex by other conditions), and professionals who are better equipped to provide this support.

Autek believes that accessible videos are part of the solution.  Another part of the solution is to start research that listens to the specific challenges that autistic people face trying to manage diabetes. The research needs to be Participatory Action Research, making autistic voices at the centre of understanding and designing solutions that work.

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