'Just when you think you got it all sorted..': Parental dilemmas in relation to the developing sexuality of young profoundly disabled people

Sexuality is a neglected topic in the literature focusing on young profoundly disabled people. For parents and formal carers who work with parents and young people themselves, however, sexual development and identity pose fraught and complex challenges in understanding and addressing young people's needs. This paper is based on qualitative research which explored parents' experiences, feelings and understandings and the responses of formal carers to parents' perspectives. The parents faced contradictory pressures to deny and not to deny sexuality. Formal carers drew on beliefs about 'good parenting' in reactions to the position of parents. Both groups confronted real dilemmas with young people who are incapable, and may never be capable, of informed consent or self-determination in sexual relationships.