What Kinds of Assessments are Completed by Occupational Therapists for Children and Adults with Fragile X Syndrome?

Before an appropriate treatment program can be designed for a child or adult with fragile X syndrome, an evaluation of sensory and fine-motor strengths and needs should be completed. Such an evaluation may include an interview with parents and teachers, observation of the affected person in various situations, and some formal tests.

Interviews with parents and caregivers may provide the assessment team with knowledge about the child's or adult's typical performance and reactions in various situations. As discussed in the section on characteristics, persons with fragile X syndrome often have difficulty in situations that are new or are noisy, crowded, or confusing, and parents may be able to describe their child's reactions and coping strategies in such instances.

Observations may take place in the home, classroom, and workplace. The occupational therapist (OT) tries to determine what settings are optimal for best performance by the child or adult with fragile X and what alterations can be made in the environment to help that person. Lighting adjustments, noise reduction, or private, calming spaces may prove helpful to a person overwhelmed by too much sensory stimulation. The OT may also observe the individual during transitions from one activity to another and when unexpected events take place. The OT may also observe the affected individual with regard to seating (postural issues) and movement.

Formal tests might include developmental scales, such as the Bayley Scale of Infant Development for young children, or the Vineland Social Maturity Scale for older children and adults. These measures assess developmental levels in self-help skills, play, communication, and socialization. Play inventories, such as the Knox Play Scale, might be used. Sensory integration tests, such as that of Jean Ayers, may be very helpful for persons with fragile X syndrome. Fine-motor tests, such as the Developmental Test of Visual-Motor Integration or the Goodenough Draw-a-Person Test, might also be a part of the assessment.  Occupational therapists look at grasp of a pencil or crayon and the motor movements used to copy and draw shapes and figures.

Information about oral-motor development may be gathered by the occupational therapist or the speech-language pathologist. They both look at how the child or adult chews, swallows, and tolerates various textures of foods. The SLP also looks at how the child moves his tongue and lips to articulate various sounds.

Information from all of these assessments is combined to form a plan for intervention. Intervention may combine developmental therapy (neurodevelopmental therapy and sensory integration therapy) with functional therapy (self-care and fine-motor therapy).

Gail Harris-Schmidt, Ph.D., CCC-SLP
Saint Xavier University
Chicago, Illinois

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