The Story Behind the A.C.T.

"The idea for the Autistic Communication Tool (A.C.T.) began during my doctoral research into the wellbeing of older autistic adults, where I witnessed frequent communication breakdowns in Primary Care—often causing autistic patients to disengage from care.

I recognised a key issue: many healthcare professionals lack understanding of autism and how to adapt consultations for neurodivergent patients.

While working with Prof. Simon Rogers on a simple Patient Concerns Inventory (PCI) in Rheumatology, I was inspired to see how a simple tool could facilitate communication in clinical interaction so effectively. I was inspired to develop the concept for autistic patients in primary care.

The A.C.T. provides a clear, concise way for autistic patients to signal their neurodivergence and communication needs. It helps improve consultations, reduce anxiety, and increase clinician awareness—even in brief appointments.

Crucially, the A.C.T. was co-developed with autistic co-researchers, reflecting our shared commitment to improving healthcare access and outcomes for autistic people.

Early feedback from both patients and clinicians has been very positive—and this is just the beginning. We aim to expand its use nationally and into other healthcare settings."

Why the Tool Is Needed

• Autistic people face many barriers when accessing healthcare. These barriers often lead to poorer health outcomes, even though the health conditions they face are no different from the rest of the population. The difference lies in how easily they can access support and communicate their needs.

• Many autistic individuals find healthcare appointments stressful. They may feel anxious, find it difficult to explain their symptoms clearly, or feel misunderstood by healthcare professionals. Appointments can feel rushed, and there may not be enough time to process questions or responses. Some people may even lose the ability to speak during times of stress, which can make getting help even harder.

• A major issue is that autism is not always recorded in a patient's medical notes. Even when it is, there is rarely any detail about how that person communicates or what adjustments might help them feel comfortable. This can leave healthcare professionals unaware of how to best support their patient. As a result, some autistic people avoid healthcare altogether, leading to late diagnoses, untreated conditions, and preventable health problems.

• This is where the Autistic Communication Tool (A.C.T.) comes in. It was designed in partnership with autistic people to make it easier to prepare for healthcare appointments and share important information. The tool helps patients communicate their needs, symptoms, and preferences in a clear and structured way. It also gives healthcare professionals the insights they need to adapt their approach.

• By improving communication and reducing anxiety, the A.C.T. aims to make primary healthcare more accessible and more effective for autistic patients.