"The doctor didn't believe me": Autistic experiences of reporting pain
What happens when autistic individuals tell medical staff they are in pain? Often, the answer is that they are not believed.
Published 29 April 2025. Written by Leeds Autism Practice Staff.
When autistic individuals tell a doctor they are in pain, they are not always believed. What is going wrong in these situations and how can we fix it?
What happens when autistic individuals tell medical staff they are in pain?
Many autistic individuals report that medical staff do not believe them when they say they are in pain.
Stories include doctors not believing them about broken bones, fractured pelvises, meniscus tears, migraines, fibromyalgia, sepsis, gallstones and many other serious conditions.
Lack of proper medical care has led to significant suffering, and even cases of individuals overdosing on over-the-counter pain medication because they are unable to access more suitable medication.
Why might this happen?
Doctors are often in tough situations. On one hand, strong painkillers are highly addictive and should only be prescribed when necessary. However, it is also critical that everyone gets the care they need, including pain management.
This means that doctors often need to rely on their judgment to determine whether a patient is in sufficient pain or not.
This could be a problem for anybody. But is particularly a problem for autistic individuals as they communicate differently. They may be less emotionally expressive, be more reliant on verbal rather than non-verbal communication, or communicate their pain in an atypical way that doctors, without sufficient training on neurodiversity, may miss.
Autistic individuals may also have different pain thresholds, may not be able to recognise pain as a bodily signal until it is significant, or struggle to understand the social rules around when and where it is appropriate to seek care.
Some autistic individuals rely on pre-prepared answers to social interactions. For example, replying "okay" when they are asked how they are before then elaborating on how much pain they are in.
Autistic individuals are more likely to have experienced trauma which may impact their ability to advocate for themselves or seek the care they need.
How can autistic individuals advocate for themselves?
There are several strategies autistic people themselves can use to advocate for better care. Possible strategies include:
Explaining to medical staff that we are autistic and therefore may not communicate pain in the same way. Ask them to pay more attention to the words we are saying than the non-verbal signals which neurotypical individuals may not be able to read reliably.
Describing the pain in impact on day-to-day living such as "it is preventing me from sleeping", "it is preventing me from eating" or "I cannot take a shower because the pain is so bad".
Using a rating scale such as a Defense and Veterans Pain Rating Scale (DVPRS) to ensure both parties have a common language to discuss the level of pain.
Deliberately being more emotionally and non-verbally expressive. For example, expressing our pain through groaning or screaming.
Bringing a trusted person to medical appointments so that they can advocate for you. It can be very difficult to advocate for ourselves clearly when in a significant amount of pain.
What can medical staff do about it?
First of all, we understand that medical staff are doing the best they can and want to support their patients as fully as possible, but may not have sufficient training to do that.
Our best advice is that if an autistic person tells you they are in a lot of pain, believe them. Do not rely on your ability to read non-verbal signals which may not be accurate when dealing with autistic patients.
Finding a common language, such as impact on daily living, or using a 0-10 pain scale worksheet where each step is clearly described, can help avoid misunderstandings.
On an organisational level, advocate within your workplace for further training on supporting neurodiverse patients.
Summary
Autistic individuals are often not taken seriously when they report pain to medical staff. The most likely cause is that autistic individuals may communicate pain differently to neurotypical individuals. Non-verbal signals are not a reliable way of determining how much pain an autistic patient is in.
These problems can be reduced by finding a common language to discuss pain, such as clearly described rating scales or focusing on the impact on day-to-day living. But most importantly, believing autistic patients when they discuss their pain levels.