What is intersex/DSD?
An estimated one in 2,000 babies is born with a reproductive or sexual anatomy and/or chromosome pattern that doesn’t seem to fit typical definitions of male or female. The conditions that cause these variations are sometimes grouped under the terms “intersex” or “DSD” (Differences of Sex Development). These conditions include androgen insensitivity syndrome, some forms of congenital adrenal hyperplasia, Klinefelter’s syndrome, Turner’s syndrome, hypospadias, and many others.
Intersex people or people with DSDs have lived in all cultures throughout history. These conditions occur naturally, if rarely, and individuals and societies have developed different ways of responding to this reality.
How has American society responded to intersex conditions or DSDs in the past?
One reason many people haven’t heard of intersex conditions or DSDs is that these conditions are not widely discussed. In America beginning in the 1950’s, infants and children with intersex conditions or DSDs were routinely given multiple surgeries and other medical interventions intended to make their bodies appear more typical. Their families were told to keep their conditions a secret, sometimes even from the child. Sometimes doctors didn’t tell the parents or the children the full truth about the child’s condition. At that time, doctors believed that early surgical intervention and secrecy would help the child develop a “normal” gender identity as either a boy or a girl. Most children with intersex conditions or DSDs were lost to follow-up after surgery and no significant studies were done to evaluate this treatment.
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 conditions had led to damaging feelings of shame and stigma. Leaders of the adult intersex community called for an end to unnecessary surgeries, and for children with DSDs or intersex conditions to have a voice in their own treatment. At first, their input had little effect on the treatment of children. In the late 90’s, however, the single case study that provided the basis for the surgery/secrecy model was discredited. The insights of intersex adults began, slowly, to have some impact on the treatment of children born with intersex conditions or DSDs.
At around the same time, parents of children with intersex conditions or DSDs began to find each other and form support groups. They realized that they, too, were not alone. They began to advocate for models of care that take the experiences and wisdom of children and their families into account. Parents’ groups have organized mostly around specific medical conditions, and have advocated 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 efforts have also started to impact standards of care and support for research.
What happens to children who are born with intersex conditions or DSDs today?
In response to the urging of parents, affected adults, and clinicians, new standards of care have recently been released by the Consortium on Disorders of Sex Development and the International Consensus Conference on Intersex. These standards are not binding, and no data has yet been gathered to show whether they are being widely used. However, they do signal progress. The new standards encourage doctors to give parents complete information about their child’s condition. Generally, parents are also no longer told to keep their child’s medical condition a secret from the child. Many doctors now recommend psychological support for families and children rather than secrecy and avoidance. However, many families still lack access to these support services.
Surgical treatment of children with intersex conditions or DSDs is currently a very controversial topic among specialists. Some doctors are suggesting a more restrained approach to surgery, and some contend that new surgical techniques may have better outcomes than older ones. Other doctors recommend postponing surgery until the child is old enough to participate in the decision, pointing to the lack of data showing that surgery benefits the child. In spite of what the NIH has termed “a crisis of clinical management,” elective genital surgery on infants with DSDs or intersex conditions is still the predominant practice in the U.S.
There continues to be a shortage of follow-up studies, and little is known about how current treatment models actually impact the lives of affected children. Parents of children with DSDs or intersex conditions find themselves in the difficult position of making medical decisions they never anticipated, in an area where medical opinions are sharply divided, and with little evidence to guide them. Furthermore, while some parents are comfortable with the information given to them by their children’s doctors, others report feeling pressured to make quick decisions without adequate information or support.
Source: Advocates for Informed Choice