Androgen Insensitivity Syndrome with Male Sex-of-Living

Abstract

Recent articles (Kulshreshtha et al., 2009; Meyer-Bahlburg, 2009, 2010; Nourizadeh& Hashemzadeh,2008; T’Sjoenetal., 2011)regardingmalegender identity incompleteandrogeninsensitivity syndrome (CAIS) prompt me to report my own similar history of male upbringing in spite of Quigley grade 5 (i.e., close to CAIS in phenotype, but with slight clitoral enlargement and partial labial fusion) (Quigley et al., 1995), partial androgen insensitivity syndrome (PAIS), and change to female sex-ofliving in early adulthood. I am also seeking to clarify some minor points. MeyerBahlburg (2009) and Zucker (1999) have both written that there hadbeenapreviouscaseofCAISwithmaleupbringingreported by Money (1991). I know that this patient actually had partial AIS because I am his cousin. He (my cousin) was also described by Money and Ogunro (1974). Another minor point: Crawford et al. (1970) reported my age at mastectomy as 14 and Money (1991) reported it as 15. I was actually still age 13 at that time. I would like to offer my thoughts based on first-hand experience of a situation similar to that of the patients in the aforementioned articles with CAIS living as males. An underlying, unquestioned assumption in much writing on changes of sex-ofliving is that ‘‘gender identity’’ is an imperative, overriding psychological force. My own pediatric endocrinologist (J. D. Crawford, M.D. of Massachusetts General Hospital) told me when I was age 21 that gender identity was‘‘an unshakable conviction.’’However, he never asked me whether I experienced it that way. My actual inner experience was of gender identity as an ordinary, malleable conviction, vulnerable to changes in perception of facts. As a child, I had been told that medical authorities hadconcludedthat Iwasmale.However, later,asayoungadult, I revised this to the belief that I was actually a person with AIS who should more appropriately be living as female. Perhaps those interested in the psychology of gender identity should pause to question the belief that‘‘gender identity’’always exists as a profound, unalterable psychological force or drive. Some seem to be using as their model for gender identity the compulsion of transsexuals to live as their target gender, no matter what the impediments. If transsexuals did not have such a need, they would not be transsexuals, but it is a great leap to assume that all other persons’ experience of gender identity is of the same nature. Perhaps what clinicians perceive as‘‘core gender identity’’ is sometimes not a deep and integral component of a patient’s psychological makeup, but instead a somewhat superficial reaction and adaptation to the social and medical predicament the patient perceives himself/herself to be in. The apparent male gender identity of the patients in the Kulshreshtha et al. and T’Sjoen et al. articles might be partly, or even wholly, explicable as the product of the patients’ having been told they were, in some sense,‘‘really’’male, than having their reactions reinforced by counselors. The authors seek an explanation in chromosomes or genetics or brain differentiation, but perhaps what they are seeing is not much more than their own ideas being recycled back to them. A person’s actions may be controlled, not only through overt or inchoate coercion, but also through their being misinformed or under-informed. A child’s apparent‘‘gender identity’’may consistofhisorherperception ofan immutable reality. Children knowthat, in theordinarycourseofevents,peopledonotchoose their own sex. They may perceive the word of an authority like a physician, not merely as one human being’s opinion, but as a simple statement of an unchangeable fact. My own history indicates that clinicians are not extremely perceptive about intersex children’s gender identity and can even be complexly wrong about it. Records from when I was P. Cadet (&) White River Junction, VT 05001, USA e-mail: peggycadet@gmail.com