Management of a person with fragile X syndrome
Although most males and some females with fragile X syndrome (FXS) require lifelong care and support, many achieve functional life skills.
Children with fragile X syndrome should be referred for early childhood intervention.
For the management of specific health concerns in people with fragile X syndrome, see Common health problems associated with fragile X syndrome. Care plan summary for a person with fragile X syndrome describes a care plan summary for a person with fragile X syndrome.
genetic counselling of the person with fragile X syndrome, genetic testing of relevant family members; grief and supportive counselling for family (eg from a psychologist)
hearing assessment with an audiologist
vision assessment with an optometrist or ophthalmologist
assessment for orthotics with a podiatrist
consider diagnosis of coexisting psychiatric disorder (eg anxiety disorder) and a trial of appropriate medications
behavioural assessment with a psychologist (including anxiety, IQ, ADHD and autism spectrum disorder); consider behaviour management strategies
educational assessment with a psychologist; advice for school staff
speech and language assessment with a speech pathologist to optimise communication support and dysphagia management (if needed)
assessment of workplace, day program, sensory issues with an occupational therapist
consider referral to a developmental paediatrician, neurologist or psychiatrist with intellectual disability expertise
connect with Centrelink for help with funding, home support, NDIS application or review
provide information on support organisations (eg Fragile X Association of Australia)
multidisciplinary assessment at a Fragile X Association Clinic
Adapted with permission from the Fragile X Alliance Inc. Melbourne.
For advice on the care of a person with developmental disability at various life stages, see children, adolescents, adults or people who are ageing.