Individuals with fragile X syndrome (FXS), especially those co-diagnosed with autism spectrum disorder (ASD), face many sensory processing challenges. However, sensory processing measures informed by neurophysiology are lacking. This paper describes the development and psychometric properties of a parent/caregiver report, the Brain-Body Center Sensory Scales (BBCSS), based on Polyvagal Theory. Parents/guardians reported on 333 individuals with FXS, 41% with ASD features. Factor structure using a split-sample exploratory-confirmatory design conformed to neurophysiological predictions. Internal consistency, test–retest, and inter-rater reliability were good to excellent. BBCSS subscales converged with the Sensory Profile and Sensory Experiences Questionnaire. However, data also suggest that BBCSS subscales reflect unique features related to sensory processing. Individuals with FXS and ASD features displayed more sensory challenges on most subscales.
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We wish to thank all families who dedicated their time to make this study possible.
JK, MR, KJH, and SWP contributed to the conception and design of the study; JK conducted analyses and wrote the first draft of the manuscript; JK, MR, KJH, and SWP contributed to manuscript revision and approved the submitted version.
This study was funded by the North Carolina Translational & Clinical Sciences Institute Grant # 550KR111516.
Conflict of interest
Jacek Kolacz declares that he has no conflict of interest. Melissa Raspa declares that she has no conflict of interest. Keri J. Heilman declares that she has no conflict of interest. Stephen W. Porges declares that he has no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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Kolacz, J., Raspa, M., Heilman, K.J. et al. Evaluating Sensory Processing in Fragile X Syndrome: Psychometric Analysis of the Brain Body Center Sensory Scales (BBCSS). J Autism Dev Disord 48, 2187–2202 (2018). https://doi.org/10.1007/s10803-018-3491-3
- Fragile X
- Autism spectrum disorders
- Polyvagal theory
- Autonomic nervous system
- Sensory processing