A Cross-Neurotype Analysis of Camouflaging and Illness Perceptions in People with Central Sensitivity Syndromes

Abstract

Background:

Central sensitivity syndromes (CSS) are a group of conditions, including fibromyalgia, migraine, and others, that are thought to share a common mechanism of central sensitization—that is, pain and hypersensitivity that originate in the central nervous system. Research suggests that autistic adults may be more likely to have a CSS, and that autistic traits, sensory sensitivity and anxiety, all contribute to an association. This study aimed to explore whether autistic camouflaging could also be related to CSS symptoms in autistic and nonautistic adults. In addition, we completed an analysis of illness perceptions to determine whether autistic and nonautistic people may experience chronic illness differently.

Methods:

The sample comprised 504 adults (88 men, 416 women) with clinical diagnoses of autism, CSS, both diagnoses or neither (i.e., a comparison group), who completed online self-report validated questionnaires, including the Autism Spectrum Quotient, Central Sensitization Inventory, Sensory Perception Quotient, the Camouflaging Autistic Traits Questionnaire, the Brief Illness Perceptions Questionnaire, the Patient Health Questionaire-9, and Generalized Anxiety Disorder-7.

Results:

Camouflaging significantly predicted CSS symptoms in this sample. Autistic people with a CSS had higher camouflaging scores (mean: 130.28) than the other diagnostic groups, with a significant difference between the comparison and the CSS-only group (p < 0.001). The autism-only and CSS-only groups had significantly higher camouflaging scores than the comparison group (p < 001) but not from each other (119.35 vs. 107.94). Autistic people reported a significantly more negative effect of chronic illness on their life (f (1333) = 5.289 p = 0.022); there were few other differences in illness perceptions between autistic and nonautistic people with a CSS.

Conclusion:

Autistic camouflaging is associated with CSS symptoms. Autistic people who receive a CSS diagnosis are particularly at risk for greater illness-related disability, including poorer quality of life and mental health.

Community Brief

Why is this an important issue?

Lots of research has demonstrated that autistic adults are more vulnerable to poor physical health and chronic illness. Autistic people seem to be more likely to have central sensitivity syndromes (CSS). Conditions listed under the CSS umbrella include fibromyalgia, irritable bowel syndrome, and migraine. These conditions are considered to share a common mechanism of “central sensitization,” in which the neural signals in a person’s brain and spinal cord become amplified, causing several symptoms, including pain and sensory hypersensitivity, fatigue, and brain fog. We do not have a good understanding of why CSSs are common in autistic people, or what impact CSSs have on autistic people’s lives.

What was the purpose of this study?

We wanted to explore how some psychological or social factors in people’s lives might differ between autistic and nonautistic people with and without a CSS. We were particularly interested in whether there was a relationship between camouflaging, which is when people use social strategies and techniques to hide their autistic traits, and CSS symptoms. We also wanted to explore whether autistic and nonautistic people think about and perceive chronic illness differently.

What did the researchers do?

We used data from 504 online survey participants to compare social camouflaging scores between autistic and nonautistic people with and without a CSS. We also explored group differences in autistic and nonautistic illness beliefs between a subset of people who all had a CSS diagnosis.

What were the results of the study?

While autistic people camouflaged the most, nonautistic people with a CSS had higher camouflaging scores than the comparison group (nonautistic people without a CSS). This could suggest that the CAT-Q, the measure used to explore camouflaging, may also be capturing techniques that nonautistic people use in everyday life to manage others’ impressions of them, such as through concealing symptoms and effects of chronic illness. Alternatively, it could suggest that a significant number of autistic people receive a CSS diagnosis before autism is recognized, and that diagnostic overshadowing could be happening—that is, traits and experiences related to autism could be missed or misattributed by clinicians to an already diagnosed CSS. Autistic people with a CSS also reported a greater impact of illness on their life, even though the number of symptoms they experienced did not differ significantly from nonautistic people with a CSS. This could mean that, in addition to autistic people being more likely to experience chronic illness, the impact of chronic illness may be greater on autistic people than for nonautistic people.

What do these findings add to what was already known?

While it is known that autistic people are more prone to physical ill health, these findings add to our understanding of the association between autism and CSS. They also suggest that underdiagnosis of autism and/or diagnostic overshadowing could occur in people with both CSS symptoms and autistic traits, and emphasize the heavy impact of chronic illness on autistic quality of life.

What are potential weaknesses in the study?

The participants were recruited online with a large proportion of women responding, and more nonautistic people with a CSS than autistic people.

How will these findings help autistic adults now or in the future?

These findings draw attention to the experience of autistic people with a chronic illness and suggest future directions for research into autism and co-occurring conditions.