DRWF Podcast: “Nothing was helping me” – why we are raising awareness about diabetes and autism
DRWF and Autek CIC recently published findings of a new report into the connected conditions to coincide with World Autism Awareness Day.
DRWF in collaboration with Autek CIC have published the findings of our report following a consultation into the challenges faced by autistic people managing diabetes, including type 1, type 2 and gestational.
In the latest episode of the DRWF Living with Diabetes podcast we discuss the recent report produced by Autek CIC in partnership with DRWF to coincide with World Autism Awareness Day (2nd April).
The consultation was carried out with people living with diabetes and autism through a series of workshops and interviews to explore the individual challenges faced by people living with these conditions. There are few recommended treatment pathways offered to people with diabetes and autism due to lack of previous research in this area.
The consultation follows DRWF and Autek CIC recent announcement of a new collaboration focused on improving diabetes outcomes for autistic people.
Improving diabetes outcomes for people living with autism
Through this work, DRWF and Autek CIC aim to provide relevant and appropriate information to help diabetes management and improve diabetes outcomes for people living with autism.
In the latest episode of the DRWF Living with Diabetes podcast we discuss the recent report produced by Autek CIC in partnership with DRWF.
This special edition of our podcast coincided with Autism Awareness Month, which takes place every April. DRWF spoke to Steve Bond, Director at Autek CIC; and Dr Naresh Kanumilli, Chair of the Primary Care Diabetes and Obesity Society.
Steve, who is both autistic and living with type 2 diabetes, said: “This is a topic that is very close to my heart. I run the social enterprise Autek CIC, which aims to provide employment opportunities for disabled filmmakers and animators. We use our lived experience in the videos we create.”
Dr Kanumilli, a GP in Manchester and community consultant in diabetes at Manchester Royal Infirmary, said: “One of the big things we have been looking at is management of diabetes or supporting people living with diabetes and neurodivergence.
“I have a daughter who is autistic and I am also a director of a charity called the Vision Beyond Autism, which looks at supporting people, young people and children living with autism to have better lives within the community itself rather than sitting in residential homes.”
DRWF and Autek partnered with the aim of understanding more about the intersection of autism and diabetes, both from a perspective of specific challenges faced by this group of people, and from the perspective of what works? For example, once autistic people form a new routine around diet and exercise for diabetes, this becomes a lifelong change.
The aim of the collaboration, alongside other partner organisations, is to create a suite of educational videos that improve understanding of autism and diabetes, that can be used both with professionals who support autistic people living with diabetes, and autistic people themselves.
Read the full report from DRWF and Autek CIC here
Steve said: “We are at the risk of just not even identifying this population [people with diabetes and autism] as somebody who would benefit from screening strategies and prevention strategies. I think we need to have an open mind, and I think we should start being paying more attention to prevention and identifying these conditions early within people with neurodivergence.
“To get the report out at a time when people are focusing on autism and neurodivergence is hugely important.”
On the beginnings of Autek CIC, Steve said: “Autek was formed around the time of Covid and I had a real passion and interest in employability for autistic people and the challenges around getting work that is in a field that you are interested in but also have a special interest and talent.
“It is difficult enough getting work but getting something that you are really into just seems to be almost impossible. Our work has just grown from there, just creating a style of video that is accessible for neurodivergent for disabled people, but also helps them prepare to visit a place or a service.”
Working with DRWF to raise awareness about diabetes and autism
Steve: “At the time I was struggling with my diabetes and really could not find any help or support to understand what I needed to do, how I needed to change the way that I ate, exercised and lived my life. There was not anything that was helping me.
“I am not unique. And I know there are lots of other people like me, but I don't feel hunger. So, my interoception [“8th sense” that recognises hunger symptoms] is quite challenged in some areas and it does not make things easy for me in terms of eating. I eat out of habit.
“I went to a support group, and it was useful, I got some input from it. However, it was a very difficult environment for me to stay, in terms of sensory areas. I was looking for people to help me understand and for me to support other people in terms of developing that understanding.
“We felt that because accessible videos are a great way of communicating with autistic neurodivergent people, a partnership with a charity supporting living well with diabetes looked perfect.
“With funding from DRWF we set up a three-month consultation period where we spoke primarily to neurodivergent people living with diabetes, type 2, type 1 and gestational. The majority were type 2. We also spoke to some people living with prediabetes. We spoke to about 30 people.
“This gave us a rich picture of all of the different challenges that people face and as we all know, neurodivergent people are all unique, and so my experiences are absolutely not the same as other people.
“It was really interesting to get this much richer view from my perspective of the different challenges people face from young children developing type 1 diabetes and all of the potentially life-threatening challenges that entailed, through to people like myself, who have developed type 2 diabetes in later life.
“It was really fascinating looking at all the different aspects of neurodivergence of autism that contributed to these challenges. We also spoke to a lot of professionals as well to work out what the best practice is in terms of supporting neurodivergent people living with diabetes.”
Encouraging more people to share their experiences
Steve said: “Everyone was totally behind what we were doing. Really keen not only to share their stories, but also to be involved as the project moves forward.
“We want to take this forward as a formal research project to really understand how to improve communication between healthcare practitioners and autistic people around this particular topic.
“A lot of it is based on communication and understanding and framing some of these concepts in ways that neurodivergent people can access, absorb and then act upon. We want to take this further into a research project. We are talking with people at the University of Portsmouth around doing that at the moment.
“The other thing that we want to do is create some videos that explain in accessible ways all of the different concepts around diabetes from how their stomach digests food and creates glucose from it and that goes in and gets absorbed by cells, in ways that neurodivergent people can understand, connect with, and then then make changes to their lives.
“It is about presenting some really complicated information in simple, easy to digest, easy to understand clip of a video, short clips of a video that overall builds up and tell the story.”
How does an autism diagnosis impact children and adults when they are dealing with a long-term health condition like diabetes?
Dr Kanumille said: “We have clinics that look at annual reviews of people living with learning disabilities, but we do not particularly focus on chronic long-term conditions like diabetes.
“I think we need to be thinking about how we develop resources for people with autism and learning disabilities. We do that for people without these conditions. Our clinics are set up for more of those types of people.
“We need to spend more time with people with learning disabilities and autism, because things need to be broken down into simple instructions, that are easily understandable. We have to develop visual guides to try and make them understand because some people have a better visual memory rather than a memory from just listening to people.
“The other thing that we do not focus very much on, especially with children and young people living with autism, is prevention strategies. How do we support them from not developing diabetes or pre-diabetes? Or if they have pre-diabetes, how do we prevent them from becoming a person living with diabetes? I think those are essentials.”
Thinking beyond the condition
Dr Kanumille said: “Having read the DRWF and Autek CIC report, I think it is an eye opener for a lot of us GPs to think again when we are seeing somebody with a learning disability or autism. To think beyond their disability. Think beyond their condition and start thinking of them if this was somebody within my family – what would I do to try and give them the best treatment that is available. How do I translate evidence that they might be better off on these treatments into simple language that they are able to understand? That is the biggest problem for us.
“I am hoping through work with the Primary Care Diabetes and Obesity Society, we will try and make more of raising awareness for people with autism and how they also have long-term conditions and how we should be more patient and try and spend more time with these people to try and get them to understand better how to manage their diabetes.
“When you are dealing with people living with some neurodivergence or learning disability, think beyond their condition and think about they do have multiple long-term conditions. So, think, think, think, think! That is all I will say. Be patient, be kind.”
Steve Bond of Autek CIC said: “It has been fantastic working with DRWF to push forward my personal crusade to get better support for autistic people struggling to live with diabetes.
World Autism Awareness Day
The United Nations General Assembly designated 2nd April as World Autism Awareness Day (WAAD) in 2007, and the United Nations has since worked to promote the full realization of human rights and fundamental freedoms for people living with autism, ensuring their equal participation in society.
A statement from the United Nations said: “Over the years, significant progress has been made, driven in large part by autistic advocates who have worked tirelessly to bring the lived experiences of autistic individuals to the forefront of global discussions.
“The 2026 observance of World Autism Awareness Day, held under the theme ‘Autism and Humanity – Every Life Has Value,’ highlights and affirms the dignity and worth of all autistic people as part of our shared human future. At a time when misinformation and regressive rhetoric about the lives of autistic people is resurfacing, this year’s virtual event is a call to action to move beyond limiting narratives and to recognise the inherent dignity, equal rights, and unconditional worth of every autistic person.”
Read the full report from DRWF and Autek CIC here
Read more about living with diabetes in the series of DRWF diabetes information resources
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