In the 1990’s, intersex adults began stepping forward to say that the medical treatment they received in childhood was harmful, leading to sterility, ongoing pain, scarring, incontinence, loss of genital sensation and sexual function, and depression. Many also pointed out that the secrecy surrounding their experiences led to extremely damaging feelings of shame and stigma and had a profound negative impact on their lives.
Leaders of the adult intersex community started calling for an end to unnecessary surgeries, and for children with intersex traits to have a voice in their own treatment. At first, their input had little effect on the medical community’s treatment of children.
In the late 90’s, however, the single case study that provided the basis for the surgery/secrecy model was discredited. Slowly, the insights of intersex adults began to have some impact on the medical treatment of children born with intersex traits.
AIS-DSD 2015 Conference
Around the same time, parents of children born with intersex traits started finding each other and form supportive communities. They realized that they too were not alone. They began advocating for models of care that took the experiences and wisdom of children and their families into account.
Thus far, some parents’ groups have organized around specific intersex traits, and today the AIS-DSD Support Group, the largest intersex support group for adults, families and youth, advocates for complete disclosure of medical information to parents, more research, more sensitive care of families (especially at the time of diagnosis), and more psychological and peer support for parents and affected children. These combined efforts have also started to impact standards of care and support for research.