Background: The loss of functional hand skills is a primary characteristic of Rett syndrome. Stereotypies, dyspraxia, and other sensory processing issues severely limit the individual’s ability to reach toward and sustain grasp on objects. This loss of functional reach and grasp severely limits their ability to participate in self-help, play, and school-related activities. We proposed that Ayres Sensory Integration (ASI) treatment would improve sensory processing and motor planning, which would lay the sensory-motor groundwork for improving grasp of objects, an important first step in developing functional hand use. Objective: We examined effects of ASI treatment on rate of reaching and grasping for children with Rett syndrome/Rett-related disorders. Methods: We used an interrupted time series design to measure changes in outcome variables occurring after intervention initiation and cessation. We analyzed daily video observations during baseline, intervention, and post-intervention periods, over a span of 7 months. Results: During baseline, rate of grasping declined moderately. There was a 15% increase in grasping from the end of baseline to end of the post-intervention period. There was no significant change in rate of reaching. Conclusions: This study provides preliminary data showing very small improvements in hand grasp of children with Rett syndrome following ASI treatment; larger studies in diverse settings are needed to establish the effectiveness of this approach. This study shows that an interrupted time series research design provides a valid template for evaluating interventions for children with rare disorders.

Rett syndrome (RTT) is a neurodevelopmental disorder characterized by severe dyspraxia, hand stereotypies, and sensory processing issues for which there is no known treatment. This case describes a child with classic RTT and the child’s responses to an Ayres Sensory Integration (ASI) treatment intervention (36 one-hour sessions, 3 per week). We coded and analyzed 36 detailed treatment notes to answer the following questions: What strategies and factors facilitated or interfered with participation in the intervention? What critical elements of treatment documentation might detect small changes in praxis and participation? How do patterns of motor or praxis milestones that emerge over time relate to this child’s level of participation? We observed an increase in participation when the therapist incorporated elements of neurodevelopmental treatment (NDT) and motor learning theory– treatment strategies commonly used with children who have neuromotor conditions. This increase in participation in the ASI intervention emerged at approximately the same time that the therapist documented acquisition of new motor and praxis skills. We observed the importance of using: lateral movement activities to develop weight-shifting and bilateral coordination, rotary play to increase trunk rotation and improve postural transitions, and rhythm to promote continuing or initiating actions. The documentation of the specific amounts of assistance and prompting needed during treatment sessions was an important tool for tracking small yet meaningful responses to treatment. This case illustrates a novel use of ASI intervention supplemented with strategies that developed foundational skills, and the emergence of praxis and participation in the therapeutic intervention. We suggest further research is needed to determine efficacy of ASI for other children with this rare disorder.

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