ISNA's Recommendations for Treatment
© 1994 Intersex Society of North America
Why this document?
The current model of treatment for intersexual infants and children, established in the 1950's, asserts that since the human species is sexually dimorphic, all humans must appear to be either exclusively male or female, and that children with visibly intersexual anatomy cannot develop into healthy adults. The model therefore recommends emergency sex assignment and reinforcement in the sex of assignment with early genital surgery. It also encourages care providers to be less than honest with parents and with intersexuals about their true status.
As a growing number of us who are intersexual have shared our experiences with each other, we have reached the conclusion that, for most of us, this management model has led to profoundly harmful sorts of medical intervention and to neglect of badly needed emotional support. Our intersexuality---our status as individuals who are neither typical males nor typical females---is not beneficially altered by such treatment. Instead, it is pushed out of the view of parents and care providers. This "conspiracy of silence"---the policy of pretending that our intersexuality has been medically eliminated---in fact simply exacerbates the predicament of the intersexual adolescent or young adult who knows that s/he is different, whose genitals have often been mutilated by "reconstructive" surgery, whose sexual functioning has been severely impaired, and whose treatment history has made clear that acknowledgment or discussion of our intersexuality violates a cultural and a family taboo.
What is the Intersex Society?
The Intersex Society of North America (ISNA) is
a policy and advocacy organization devoted to systematic change to end shame,
secrecy, and unwanted genital surgery for people born with atypicalreproductive
anatomies. For more information about our ExecutiveDirector, Board of Directors,
and Medical Advisory Board, click onthe links as highlighted.
A new model of treatment
Based on discussions with dozens of adult intersexuals,we are prepared to recommend a new paradigm for the management of intersexual children. Our model is based upon avoidance of harmful or unnecessary surgery,qualified professional mental health care for the intersexual child and his/her family, and empowering the intersexual to understand his/her own status and to choose (or reject) any medical intervention.
First and foremost, we recommend avoidance of harmful or unnecessary genital surgery on infants and children. No surgery should be performed unless it is absolutely necessary for the physical health and comfort of the intersexual child. We believe any surgery that does not meet these criteria to be essentially elective cosmetic surgery which should be deferred until the intersexual child is able to understand the risks and benefits of the proposed surgery and is able to provide appropriately informed consent.
Examples of such cosmetic surgery to be avoided are plastic repair of first degree epispadias or hypospadias (minor displacement of urethral meatus),vaginoplasty, clitoral reduction or recession, and clitorectomy. Examples of conditions which would appear to justify early surgery are severe second or third degree hypospadias (with extensive exposed mucosal tissue vulnerable to infection), chordee (extensive enough to cause pain), bladder exstrophy,and imperforate anus.
The current model insists that healthy emotional development is impossible for a male child with a penis that is "too small," and demands female assignment, with extensive genital surgery. A similar argument is advanced for performing genital surgery on a female child whose clitoris is "too large." These judgments with respect to phallus size are highly subjective and currently, only anecdotal case reports, in which patients are typically "lost to followup," exist to support the case for early intervention.
We believe that for children whose only intersexual anomaly is micropenis or clitoromegaly, and who are physiologically capable of normal puberty,early surgical intervention significantly increases the risk of impaired sexual function later in life. In our experience, some prepubertal children with penile agenesis, micropenis or clitoromegaly may elect, with appropriate support from a qualified psychotherapist, to change sex role and choose medical intervention to facilitate a sex- and gender role congruent puberty.
Counseling for the entire family of a newborn intersexual,and for the intersexual child as soon as s/he is old enough. This should include thorough exploration of all the medical and surgical options open to the intersexual and his/her family and should address the family's feelings about same-sex arousal patterns and behavior since a large minority of intersexuals develop into gay, lesbian, or bisexual adults or choose to change sex---regardless of whether or not early surgical repair or reassignment was performed.
Qualified mental health care
This counseling should be performed by a mental health professional with extensive training and experience in psychotherapy and specialized competence in sex therapy and sexological theory. Psychotherapeutic skills are developed through long years of training and the practice of psychotherapy is a full-time profession. While surgeons and endocrinologists have also undergone arduous and extensive training to acquire their specialized medical skills, they typically have little or no mental health training and their busy practices generally do not permit them to obtain the necessary counseling skills. Non-psychiatrically trained physicians should no more practice psychotherapy than psychiatrists or non-medically trained psychotherapists should perform surgery or prescribe hormones.
Complete disclosure and support for patient autonomy
The current model dates back to the '50s. In those days, clinicians could safely write patient records, not to mention medical textbook and journal articles, without fear that their patients would ever read what they had written. Today, the ethics of disclosure and autonomy have changed, as has access to medical literature. Many of us have read through all of our medical records and much of the medical literature on intersex. Very few intersexuals remain unaware of their status, but many are prevented, by shame and stigma, from discussing it with anyone. Shame surrounds not only intersexual status, but also damaged erotic function due to genital surgery. It is imperative that intersexuals learn of their status in a properly supportive emotional environment and have access to a peer support group.
Referral to a peer support group. For many of us,contacting others through the Intersex Society has been a life-changing,or even life-saving, experience. ISNA provides a safe space for us to develop and express healthy identities as intersexuals.
Access to medical services with informed consent
The option of surgical and hormonal intervention should be offered around puberty. Intervention should be undertaken only at the request and with the full informed consent of the intersexual child,including the opportunity to discuss sexual function with adults who have undergone similar surgeries, and validation of the child's right to delay or to choose no surgery at all. Plastic surgery of the genitals is profoundly damaging to erotic function, and the individual choosing surgery must be allowed to evaluate the tradeoff for her/himself.