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. (For more information about specific conditions or anatomy, see the Intersex Society of North America.)
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.
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.
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.
The medical treatment of children with DSDs or intersex conditions raises several legal and ethical issues. There are important questions about whether current medical practices meet legal standards for informed consent. Some parents of children born with DSDs or intersex conditions have reported feeling pressured to make quick decisions, often without complete information about the risks of surgery and the uncertainty of outcomes. Many parents feel that their child’s emotional health is a major factor in their decisions, yet are not given access to specialists in children’s mental health and development. Caring physicians may try to ease parents’ fears by downplaying the risks, but parents who learn after the fact about the doubts surrounding elective genital surgery may be dissatisfied.
Legal scholars and ethicists have also questioned the process for making surgical decisions on behalf of children with DSDs or intersex conditions. The ethical and clinical uncertainty that exists in this area raises important questions about whether the current model of decision-making is legally valid. Additional legal questions come up if surgical treatment may result in loss of fertility for the child. No U.S. court has ruled on these issues in a published opinion.
Other legal issues that may arise for children with DSDs or intersex conditions include medical privacy rights, access to medical records, school accommodation, and bullying or teasing.Children with DSDs or intersex conditions who are in state custody, such as foster children, may have special legal needs.
Recently, there has been debate about terminology among intersex activists, parents of children with intersex conditions or DSDs, doctors, adults with DSDs who do not identify as intersex, academics and others. No consensus has been reached among stakeholders, and it seems that there is no widely-recognized terminology that is acceptable to all. AIC has made the decision to use both the terms “intersex” and “DSD” to signal our commitment to listening with compassion and respect to all of these different groups as we work to promote the rights of affected children.
This decision grew out of extensive conversation with stakeholders, and reflects the following values and beliefs:
- The language we use is important, and has consequences.
- Identity is a very personal matter; no one can tell another how to identify him- or herself.
- We are advocates for children, many of whom are not able to voice an opinion about how they identify or what terminology is most respectful.
- There is a wide diversity of opinion about what is best for children born with DSDs or intersex conditions, and these differences extend even to such basic matters as what language is best to describe affected children.
- In order to have a complete picture, we need to listen to all the many stakeholders with unique perspectives on what life is like for these special children: their families, adults with similar conditions, medical caregivers, mental health specialists, and the children themselves.
- We will be most effective as advocates for children if we are able to bridge the gaps that currently exist between and among the various groups who care about their futures.
When AIC was founded, other organizations already existed that focused on peer support for parents and/or affected adults, on political activism and awareness-building, on promoting research, and on advocacy in the medical community. (See our resources page.) Awareness was beginning to grow of the legal questions surrounding children with intersex conditions and DSDs, but no organization had undertaken legal action or advocacy on behalf of these children. With so much at stake for the individuals and families involved, we must consider not only medical outcomes, but also the civil and human rights of children with DSDs or intersex conditions. AIC is committed to advancing this discussion with a sense of respect and compassion for the children, parents, doctors and intersex adults involved.
Children with intersex conditions or DSDs have unique legal needs. They may present questions about informed parental consent for treatment, minors’ participation in medical decision-making, reproductive rights, medical malpractice, and school harassment and accommodation. Several legal organizations provide services aimed at the legal issues of intersex adults, but before AIC none had developed the capacity to address the issues of children with intersex conditions or DSDs. For this reason, AIC was founded to focus on children’s legal issues.
What does AIC mean by “compassion for the children, affected adults, parents, and doctors involved”?
The final sentence of AIC’s mission statement is “These activities are grounded in a sense of respect and compassion for the children, affected adults, parents, and doctors involved.” It’s unusual for a legal organization to have the term “compassion” in its mission statement. But AIC believes that the law, properly used, is a tool for achieving justice; and that justice, properly understood, has compassion at its heart.
Legal advocates have always had an important role to play in protecting the most vulnerable members of society, such as children with intersex conditions or DSDs. Parents, doctors, mental health professionals, affected adults and family members all care deeply about protecting these children. However the historical treatment of children with intersex conditions or DSDs and the reality of society’s intolerance of difference has created so much pain and anger that these different groups of stakeholders have had a great deal of difficulty in communicating with each other. Recognizing that all of these groups have the best interests of children at heart, AIC believes that improving communication between them is a crucial part of improving care for children with intersex conditions or DSDs. So, while we are clear that our constituents are the children, we maintain a constant focus on respectful compassion for all those who care for the children we serve.