New research replicates previous findings to show that autistic people have higher rates of all central sensitivity syndromes1, which are a varied group of conditions that are related to dysregulation of the central nervous system, compared to non-autistic people. Central sensitivity syndromes include irritable bowel syndrome (IBS), temporomandibular joint syndrome (TMJ), migraine, tinnitus, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and fibromyalgia2. (Source: University of Cambridge3)
The video below from the Complex Chronic Disease Program explains central sensitivity syndromes. At the site are also management tips. Other useful sites for chronic pain management include painguide, painhealth, NHS inform Pain Self Help Guide. Modifications with the help of a health professional (or team) to fit individual circumstances is recommended. Where patient priority care needs are considered.
Like with Autism people with more complex chronic pain and CSS may require safeguarding. The NICE ME/CFS guidelines provides safeguarding guidelines for dealing with parents with children with ME/CFS who are often mistakenly accused of childhood abuse (by health professionals and other) due to poor understanding of the condition.
This may cause considerable parental emotional distress, and add to parental care concerns, which may already include anxiety depression and burnout.
ME/CFS safe guarding recommendations
1.7.1
Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect.
1.7.2
If a person with confirmed or suspected ME/CFS needs a safeguarding assessment, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible.
1.7.3
If a person with confirmed or suspected ME/CFS needs to be assessed under the Mental Health Act 1983 or the Mental Capacity Act 2005, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible.
1.7.4
Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
- physical symptoms that do not fit a commonly recognised illness pattern
- more than 1 child or family member having ME/CFS
- disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf
- parents or carers acting as advocates and communicating on their behalf
- reduced or non-attendance at school.
1.7.5
Be aware that recognising and responding to possible child abuse and neglect (maltreatment) is complex and should be considered in the same way for children and young people with confirmed or suspected ME/CFS as with any child with a chronic illness or disability. Follow the NICE guidelines on child maltreatment and child abuse and neglect.
1.7.6
Offer children and young people with ME/CFS a review of their care and support plan at least every 6 months, and more frequently if needed, depending on the severity and complexity of their symptoms.
