Report highlights unmet needs in diabetes care for autistic people

A new consultation report published by Diabetes Research and Wellness Foundation (DRWF) and Autek CIC sheds light on the often-overlooked challenges faced by autistic people managing diabetes, drawing on their lived experiences. Released to coincide with World Autism Awareness Day, it reveals the absence of a formal framework for supporting autistic people with diabetes, meaning that healthcare professionals often develop care approaches on an ad hoc basis.

The consultation was conducted through a series of workshops and interviews with 30 autistic participants living with type 1 or type 2 diabetes, gestational diabetes or prediabetes. Participants described a wide range of barriers to effective diabetes management, including:

• Eating habits and food sensitivities that conflict with dietary advice.
• Needle phobias that affect glucose monitoring and insulin administration.
• Social interaction difficulties that make group education and clinical appointments less accessible.

The report also highlights some less well-recognised traits that can affect care, including:

• Differences in interoception, where body signals relating to hunger, thirst or changes in glycaemia are not perceived.
• Rejection sensitive dysphoria (RSD), characterised by an excessive reaction to perceived criticism.
• Pathological demand avoidance (PDA), which manifests itself as an excessive reaction to seemingly small demands.

These factors can affect how individuals engage with diabetes advice and highlight the need for adapted communication styles from healthcare professionals.

The report emphasises that understanding diabetes management in autistic people requires consideration of both the characteristics of autism and the impact of living in a largely non-autistic world. For example, it was noted that once autistic people form new routines around diet and exercise, these changes can become lifelong.

DRWF and Autek CIC identify three key priorities for improving diabetes care for autistic people: maintaining momentum with the NHS and other partners; developing autistic-friendly communication resources, including videos; and establishing a research programme to support the development of new person-centred approaches.

The full report can be read here.