Disclosure is one of the biggest issues faced by people with AIS and intersex conditions. All too often, the truth is not revealed until much later in life, if at all. As Sharon Preves notes:
"One of the most common themes in intersexuals' stories centres on the lack of full disclosure on the part of the clinicians and family members regarding the true nature of their intersexed conditions. Withholding information from the intersex patient compounds his/her feelings of confusion and shame because the individuals are told that there is something wrong with them, but they cannot and should not know the specific details of their condition."
Disclosure is all important, and has legal ramifications, considering that the basis for any medical treatment or surgery must be informed consent. In 2002, an article in the Duke Journal of Gender Law and Policy declared that physicians must fully disclose diagnosis, the nature and purpose of treatment, material risks and outcomes, skills or status risks, alternatives, prognosis if treatment accepted or declined, and conflicts of interest to patients with intersex conditions and/or their parents.
In the landmark pubication of the Consensus Statement on Management of Intersex Disorders in 2006, the author suggests that doctors should plan disclosure with the parents right from the time of diagnosis:
"Studies in other chronic medical disorders and of adoptees indicate that disclosure is associated with enhanced psychosocial adaptation. Medical education and counseling for children is a recurrent gradual process of increasing sophistication that is commensurate with changing cognitive and psychological development."
For further information, see:
Overview of the National AISSG Australia meetings
Lee, P. A. 2006. Consensus statement on management of intersex disorders Pediatrics . 118 (2): p.e493
Martin, P. L. 2002. Moving toward an international standard in informed consent: The impact of intersexuality and the Internet on the standard of care. Duke Journal of Gender Law and Policy . 10: pp.135-170.
Preves, S. E. 2003. Intersex and identity: The contested self. New Brunswick, New Jersey and London: Rutgers University Press. p.73
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