Pain, Autism and Hypermobility

Dr D Moore

What is pain by Dr D Moore

Pain is more complex than many of us first think about. It is more than just an ‘ouch’ or a sensory experience and includes emotional processes and effects our thoughts about the world, our bodies and ourselves. When things work well pain might be a good thing, it tells us that our body might be damaged and makes us behave in ways that can help us heal. Most pain goes away when our body heals but some pain does not and this might become really upsetting and maybe disabling when pain become ‘chronic’. 

What do we know about pain and autism? 

Autistic people’s pain has often been misunderstood. The Diagnostic and Statistical Manual 5 gives an example of sensory differences in autism as ‘insensitivity to temperature or pain’, and this has led many people to say that autistic people don’t feel pain. Although many autistic people will be able to tell you this assumption is incorrect, we have also done laboratory research to explore the pain thresholds of both autistic adults and children and found these are very similar for autistic folk as they are for their non-autistic peers.  

We also know that autistic folk are more likely to experience chronic pain, especially chronic pain that needs management in the most complex services. Some of this might be genetic as some conditions appear more common in autistic folk (i.e. abdominal pains), some might relate to other conditions experienced more often by autistic folk (i.e. hypermobility) and some might relate to difficulty in accessing high quality healthcare.  

Hypermobility, might be especially important here, as this might have direct and indirect effects on pain. Directly this might affect joint strength and results in musculoskeletal pain. But hypermobility also has a number of other effects that might result in pain, either changes in cologne which might result in abdominal pain, or interactions between reproductive hormones and connective tissue laxity which might put folks at greater risk of intense menstrual pain. 

How about pain management and autism? 

We still know very little about how to best manage autistic people’s pain. It seems that for folks with developmental disabilities in general that they are given less pain relief and more antipsychotic medication than non-disabled people. For low support need children who access chronic pain services their pain is typically no worse that their non-autistic peers. However, this group do appear to have more anxiety about pain, and struggle more with their mental health, which may make pain, and pain management, more difficult.  

As far as benefiting from pain management autistic children and young people appear to have similar outcomes to their non-autistic peers in a traditional pain management service. This does not unfortunately mean that autistic folk might not experience barriers when accessing pain management. For example, we have found that autistic folk might experience a cycle where mental health challenges and sensory sensitivities interact and make pain worse. This cycle potentially leads to an overload and can trigger both meltdowns and shutdowns. Autistic folk have also told us that being autistic and living in pain makes them feel doubly different, not belonging fully to either community and often being disabled in two invisible ways which can make them feel even more isolated. Autistic folk have also told us that some common pain management processes might be especially difficult, for example mindfulness.

Pain management often uses a lot of metaphorical language, which many Autistic folk have told us they find hard to understand, especially when they are not their own metaphors. We are working with autistic folk and healthcare providers to try to develop pain management approaches which might be better suited to autistic folk, including adapted/novel approaches, the use of straightforward, practical language and that try to harness the things that autistic folk might be good at or interested in, rather than trying to ‘correct’ things that people might find more difficult.  

Dr D Moore is a Reader and researcher in pain at LJMU university