Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the FORWARD Registry and Database Multisite Study.

This study was designed to increase our understanding about characteristics and the impact of sensory symptoms (SS) and signs of hyperarousal (HA) in individuals with fragile X syndrome (FXS) from childhood through early adulthood and by gender. Data derived from the Fragile X Online Registry With Accessible Research Database (FORWARD), a natural history study of FXS, were analyzed using descriptive statistics and multivariate linear and logistic regression models to examine SS and signs of HA, their impact on behavioral regulation and limitations on the subject/family. The sample (N = 933) consisted of 720 males and 213 females. More males were affected with SS (87% vs. 68%) and signs of HA (92% vs. 79%). Subjects who were endorsed as having a strong sensory response had more comorbidities, including behavioral problems. The predominant SS was difficulty with eye gaze that increased with age in both genders. As individuals age, there was less use of non-medication therapies, such as occupational therapy (OT)/physical therapy (PT), but there was more use of psychopharmacological medications and investigational drugs for behaviors. Multiple regression models suggested that endorsing SS and signs of HA was associated with statistically significantly increased ABC-C-I subscale scores and limited participation in everyday activities. This study improves our understanding of SS and signs of HA as well as their impact in FXS. It supports the need for more research regarding these clinical symptoms, especially to understand how they contribute to well-known behavioral concerns.

Integrated Occupational Therapy Camp for Children with Regulation/Sensory Processing Differences: Preliminary Evaluation.

Background. Integration of occupational therapy into a camp environment may support participation for children with neurodevelopmental differences, but evidence is limited. Purpose. This study examines the effects of participation of children with regulation/sensory processing differences at one such integrated camp on parent-established functional goals. Method. We used a pre-test/post-test repeated measures cohort design. Individualized goals were established with parents three months before camp using the Canadian Occupational Performance Measure (COPM) (n = 82, child ages 4-13). Parents re-rated goals immediately before, one month after, and three months after camp. Findings. Repeated measures ANOVA revealed improvement in occupational performance over the week of camp significantly exceeded change within the three months prior. Improvements remained stable three months post-camp. Implications. Integrating occupational therapy within a camp setting is beneficial for children with neurodevelopmental differences. The COPM can be integrated into a camp setting to document meaningful change in individualized parent-established goals.