Summary Communicating a diagnosis of disability to parents, when the diagnosis and prognosis are unclear, is problematic. This is discussed in the light of information received from mothers of such children who attended a counselling and support group. It is concluded that dissatisfaction with diagnosis is not inevitable, if similar guidelines to those suggested for children with Down's syndrome are used. It is essential that parents are involved in management and feel they have something practical to do to help their children. Clinics must organize themselves to avoid swamping parents with information and to provide regular ongoing support.