What does ISNA recommend for children with intersex?

After years of consultation with people with intersex conditions, their parents, their healthcare providers, and others, the following Patient-Centered Model is what ISNA recommends.

• Children with intersex, parents of those children, and adults with intersex should be treated in an open, shame-free, supportive, and honest way. They should consistently be told the truth (this includes providers being honest about uncertainty), and should be given copies of medical records as soon and as often as they ask for them.

• Children and adults with intersex, and their family members, should be provided with access to trained psychologists and social workers, especially when they are in distress (as some parents of newborns with intersex are). Parental distress should not be treated with “normalizing” surgery on children, nor should surgeons, endocrinologists, and other non-psycho-social specialists attempt to cover family’s counseling needs.

• Care providers should also attempt to connect children and adults with intersex and parents of children with intersex so that they can give each other peer support outside of the clinical setting. This helps validate their feelings and experiences. Peer support saves families and lives.

• Following diagnostic work-up, newborns with intersex should be given a gender assignment as boy or girl, depending on which of those genders the child is more likely to feel as she or he grows up. Note that gender assignment does not involve surgery; it involves assigning a label as boy or girl to a child. (Genital “normalizing” surgery does not create or cement a gender identity; it just takes tissue away that they patient may want later.)

• Medical procedures necessary to sustain the physical health of a child should be performed. Examples of these would be endocrinological treatment of a child with salt-wasting congenital hyperplasia, or surgery to provide a urinary drainage opening when a child is born without one.

• Surgeries done to make the genitals look “more normal” should not be performed until a child is mature enough to make an informed decision for herself or himself. Before the patient makes a decision, she or he should be introduced to patients who have and have not had the surgery. Once she or he is fully informed, she or he should be provided access to a patient-centered surgeon.

Does this mean ISNA recommends “doing nothing”? Not at all. Please re-read the above, and if you’d like more information about how our recommendations differ from the traditional concealment-centered model, check out our chart called Shifting the Paradigm of Intersex Treatment.