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Evaluating Sensory Processing in Fragile X Syndrome: Psychometric Analysis of the Brain Body Center Sensory Scales (BBCSS)

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Abstract

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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Acknowledgments

We wish to thank all families who dedicated their time to make this study possible.

Author Contributions

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.

Funding

This study was funded by the North Carolina Translational & Clinical Sciences Institute Grant # 550KR111516.

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Authors and Affiliations

  1. Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, USA

    Jacek Kolacz

  2. Traumatic Stress Research Consortium, Kinsey Institute, Indiana University, Bloomington, IN, 47405, USA

    Jacek Kolacz & Stephen W. Porges

  3. RTI International, Research Triangle Park, NC, USA

    Melissa Raspa

  4. Department of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, USA

    Keri J. Heilman & Stephen W. Porges

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  1. Jacek Kolacz
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Correspondence to Jacek Kolacz.

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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.

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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

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