Medicine simply has a different approach than the social sciences. For that reason, medical-scientific research gives a limited picture of the social consequences and experiences of being intersex. Medicine also gives a distorted picture of the negative social1It is obvious that negative social consequences through social exclusion also result in negative economic consequences. Unfortunately, even less is known about the economic consequences than about the social ones. consequences of society’s non-acceptance of sex diversity, because doctors cannot report on people they no longer see2This is called “lost to follow-up”. The lost-to-follow-up rate is generally so high that outcomes of medical scientific research can rarely be generalized to the total population.
Moreover, little research has been done into the consequences of personal trauma. More research on this is necessary, because the available data from medical-scientific research is alarming. To some extent, health professionals can observe the problems, but it is not part of their job to change society. Even if they wanted to, health professionals have too little influence in society to bring about the necessary change. And even if they could, their involvement in creating and sustaining the problems is reason enough to keep a suitable distance3For many health workers it is difficult to accept that they are at least involved in creating and sustaining problems that intersex people experience in society. Although there are numerous publications that point this out and intersex activists are becoming more vocal, the views of intersex people who disagree with the treatment are still consciously or unconsciously misrepresented. This is the case, for example, in the response of Cools et al. to the report of the European Commissioner for Human Rights(Cools 2016) and a Meyer-Bahlburg priority review(Meyer-Bahlburg 2017).
Research on the social consequences of intersex
The Dutch scientific institute ‘Social and Cultural Planning Office’ has conducted exploratory research on this matter. It, too, concludes:
that being intersex does not only have physical consequences,
that intersex people critically evaluate who they diclose to,
that they adapt or avoid situations so that it remains a secret that they are intersex,
that being intersex can make relationships, self-image as a partner or shaping a desire to have children difficult,
that there is shame and fear of unwanted responses,
that unwanted reactions mainly come from ignorance, discomfort and lack of understanding,
that most research participants hardly ever blame people in their social environment for this,
and that they hardly seem to associate unwanted responses in their own environment with non-acceptance or discrimination (Van Lisdonk 2014).
This picture corresponds with the results of the study conducted by Margriet van Heesch. In that research, 42 intersex people told their life stories in interviews lasting two to six hours. Telling these stories was extremely important to participants. Some had not dared to tell their story to anyone outside the medical profession before – Van Heesch describes a situation of ‘secret stardom‘ in which the patient is treated by health professionals as someone very special and highly valued by doctors, but who does not see the same appreciation in society because of the secrecy. Nevertheless, the interviewed intersex people did not want their experiences to be lost because they hoped that others could learn from them; they wished that telling their story would turn the taboo and stigma on their form of intersex into more openness and less shame in society (Van Heesch 2015).
In the recommendations for the future, Van Heesch writes:
I hope that the six discourses that influence the stigma and taboo surrounding sex variations will be challenged. To mention: binary sex positions, reproductive imperative, heteronormativity, homophobia, coital imperative and the curable nature of intersexuality (Van Heesch 2015).
Van Heesch hits the nail on the head with this because these six discourses form an important basis for the medical treatment of non-medical problems. This is exactly what NNID wants to see reflected in a quality standard for DSD: the recognition that a significant part of the ‘medical’ care currently provided for intersex/DSD is not the responsibility of health professionals.
Although Van Heesch’s research does provide some insight into this, it is not clear what the consequences of the six discourses mentioned by Van Heesch are. For that, more research is necessary. Until that research has been conducted, research results from Australia and Europe can be looked at.
Commissioned by the European Commission, TNS Nipo interviewed 1014 Dutch people in May 2019 for a broad survey on discrimination. It was the first time that discrimination based on intersex variation was included in the Eurobarometer survey.
Strikingly, in the Netherlands it is thought that lesbian, bisexual, and gay (LBG people) are discriminated against much more than trans people and intersex people. 60 percent of Dutch people think that in their country discrimination against LBG people is widespread. For discrimination against trans people, that figure is 54 percent, while only 34 percent think discrimination against intersex people is common4The percentage of Dutch people who believe that ‘discrimination because of being a man or a woman’ is common, at 33 percent, just slightly lower than the percentage who believe that discrimination of intersex people is common. Discrimination based on being Roma, ethnicity, skin color, sexual orientation, being transgender, religion or belief, disability, being considered too old or too young, are more common in the perception of Dutch people than discrimination based on someone being intersex.
At least as striking is the fact that the answers to other questions show the opposite picture.
Especially when the ‘issue’ is closer or associated with a high social position, Dutch people appear to be less fond of LGBTI people. For example, many Dutch people think it is fine if an immediate colleague is LGB (96%), transgender (92%) or intersex (91%). For people in high elected political positions however, those percentages already drop to 93% (LGB), 85% (transgender) and 84% (intersex) respectively.5The same survey shows that 97% of Dutch people would choose to vote for a woman in a high position. Only a Roma person in the highest political position of our country is less acceptable to the Dutchman (67%) than an intersex person.. The question of whether it is okay for a child of the interviewee to enter into a relationship with an LGBTI person scored the lowest: 86% for a relationship with an LGB person, 69% for a relationship with a transgender person, and 68% for a relationship with an intersex person.
Three conclusions can be drawn from these figures:
Intersex lags behind LGB in acceptance by about 5 to 18 percentage points. Transgender acceptance is only marginally better.
Acceptance is actually inverse to expected discrimination: despite people thinking LGB discrimination is significantly more common than intersex and transgender discrimination, they are more likely to say someone being intersex and transgender is unacceptable.
That acceptance seems easier when the ‘issue’ is more distant may be an indication that socially desirable answers have been given: acceptance seems primarily driven by changing social norms and values, rather than by intrinsic acceptance of LGBTI.
Percentage of Dutch people that thinks that in the Netherlands people are often discriminated
…their sexual orientation
…them being transgender
…them being intersex
Percentage of Dutch people that indicate they would be completely okay
…a direct colleague being…
…an LGB person
…a transgender person
…an intersex person
…the highest political office being held by…
… an LGB person
… a transgender person
… an intersex person
…having one of their children have a relationship with…
…an LGB person
…a transgender person
…an intersex person
Source: Special Eurobarometer 493 – “Discrimination in the European Union” Fieldwork: May 2019
Percentage of Dutch people that says that in The Netherlands discrimination mostly occurs based on…
Bron: Special Eurobarometer 493 – “Discrimination in the European Union” Fieldwork: May 2019
Data: Jones et al. 2016
Research into the experiences of intersex people in Australia (Jones 2016) has shown, among other things, that 18 percent of respondents only completed primary education (as opposed to 2 percent for the total population). That percentage is also higher than the percentage of transgender people that did not complete secondary education.
Concerning this, the researchers state:
Given that by law Australian young people are required to stay in schools until 15-17 years of age (depending on state and territory laws), this educational disruption suggested that there have been difficulties for people with intersex variations either in school contexts themselves, and/or in relation to their general experiences at schooling age, in ways which affected schooling success and meant they dropped out of/left schools without being able to take advantage of the full qualifications available to them there, and increasingly necessary for opening up job opportunities in modern times.
What stands out is that intersex people actually perform better than average in higher education.
Data: Jones et al. 2016
The income of intersex people also lags behind severely compared to the national average. At the time of the survey, the average income in Australia was over 80,000 Australian dollars a year. In contrast, 63 percent of the respondents in Jones et al. earned less than 41,000 Australian dollars a year. Forty-one percent even earned less than 20,000 Australian dollars a year.
The percentage of intersex people who were unemployed but looking for work, at 12 percent, was also higher than the Australian national average. It is in the middle of the estimates of the percentage of unemployed transgender people, which are between 9 and 15 percent.
Although medical treatment with regard to sex diversity in Australia does not differ significantly from that in the Netherlands, the distance from people’s homes to specialized medical facilities could be a factor. Australian intersex people who participated in the survey could have different experiences than people in Europe due to this fact. This is why comparable research in Europe, with respondents who are not necessarily from a medicalized environment, is a good idea.
Recent research among intersex people who are known to DSD treatment centers has shown that 3.8 times as many respondents have attempted suicide in comparison to the control group. Because a significant number of respondents did not answer this particular question, the real percentage is thought to be even higher. The number of intersex people with mental health problems was found to be 4.3 timers higher than the number of people in the control group (Falhammar 2018).
Data: Falhammar et al. 2018
It is unknown whether the mental health issues and the high percentage of suicide attemps are symptoms of the DSD diagnosis. The fact is that these percentages are also very high6 The WHO definition of child sexual abuse is: “Child sexual abuse is the involvement of a child in sexual activity that he or she does not fully comprehend, is unable to give informed consent to, or for which the child is not developmentally prepared and cannot give consent, or that violates the laws or social taboos of society. Child sexual abuse is evidenced by this activity between a child and an adult or another child who by age or development is in a relationship of responsibility, trust or power, the activity being intended to gratify or satisfy the needs of the other person.”(Wells 2003)among children who have suffered sexual abuse(Browne 1986, Cook 2005, Fergusson 1996). Not only that, but certain treatments and examinations (including a test that is described as ‘clitoral sensory testing and vibratory sensory testing’ (Yang 2007) can be considered sexual abuse (Alexander 1997, Dreger 2015, Jones 2016, Knight 2017, Wiesemann 2010). Moreover, researchers and authorities consider the medical treatment that one group of intersex children undergo to be comparable to female genital mutilation 7The UN definition of female genital mutilation is: “The term ‘female genital mutilation’ (also called ‘female genital cutting’ and ‘female genital mutilation/cutting’) refers to all procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons.”(WHO 2008). (VGV) (Dreger 1998, Earp 2018, Ehrenreich 2005, Fraser 2016, GFMK 2014, Green 2005, OHCHR 2015, Pūras 2016). A growing percentage of intersex people also experienced the medical attention they received as (sexual) abuse (Blair 2015, Frader 2015, Meoded Danon 2018, Monro 2017, Viloria 2017). These facts make it likely that the medical attention is the cause of the mental health issues, not the intersex diagnosis in and of itself.
Other social consequences
It is often assumed that there is little to no data about the social consequences of living with an intersex variation. Although it is certainly true that not enough social scientific research has been done, medical and scientific publications can contain information that gives an impression of the social consequences of having an intersex variation or having undergone medical treatment. Unfortunately that information is rarely considered to be important in research. The results are often collected as part of more broad or general medical research.
Medical journals do not generally comment on possible causes. However, there is no scientific proof that stopping education early, not being able to find a partner, or thoughts of suicide are symptoms of sex diversity. Social exclusion remains the most obvious possible cause.
39 percent of the group > 20yr. Dropped out of highschool (average for the US is about 10%).
Lifetime sexual experience
Intercourse experience and living with male partner 42 (8%)
Intercourse experience 172 (30%)
Kissing or dating experience 165 (29%)
No experience 187 (33%)
Sexual experience at 20 yrs
Not evaluable 80 (14%)
No 354 (63%)
Yes 132 (23%)
Carel J-C, Elie C, Ecosse E, Tauber M, Léger J, Cabrol S, et al. Self-esteem and social adjustment in young women with Turner syndrome—influence of pubertal management and sexuality: population-based cohort study. Journal of Clinical Endocrinology & Metabolism. 2006;91(8):2972-2979. https://doi.org/10.1210/jc.2005-2652
2006 Johannsen et al. Women with DSD (N=70), with CAIS (n=11), Virilized females (n=16). CAH (n=40), GD (n=3)
Overall, present relationships were significantly less frequent in patients (n=41) than in controls (n=54, P=0.02)”
“A tendency towards a higher frequency of counseling due to severe symptoms was found in the patient group as compared with their matched controls (P=0.06)”
“Previous suicidal thoughts were reported significantly more frequently in the patient group (n=26) and in the operated controls (n=3), as compared with the healthy controls (n=9), PZ0.002 and 0.05 respectively. Previous suicidal thoughts were distributed unevenly among patients with higher frequencies in the 46,XX- and 46,XY-virilized females (P=0.008) and CAH females (P=0.03), as compared with their controls, while the CAIS and GD females had lower frequencies. The frequency of suicidal thoughts did not differ between patients and operated controls (P=0.67) or between patient subgroups (P=0.11).”
“A history of suicidal attempt was reported in 11.6% of the patients and 4.3% of their controls, but in none of the operated controls. Median age at first suicidal attempt was 19.5 years (range 16–34) in the patients and 18.0 years (range 17–19) in the controls. Among patient subgroups, suicidal attempts were primarily seen in the CAH group (P=0.10 as compared with their controls),”
“The mean anxiety score was significantly higher in the patients than in the controls (P=0.03) with the largest difference found between CAH females and their controls (P=0.01), while CAIS females had lower scores.”
Johannsen TH, Ripa CP, Mortensen EL, Main KM. Quality of life in 70 women with disorders of sex development. European Journal of Endocrinology. 2006;155(6):877-885. https://doi.org/10.1530/eje.1.02294
2007 De Vries at al. (Review) CAH XX female (n=95), CAH XX Male (n=14), PAIS (n=77), only 12 year and older
Rejecting the assigned gender is seen as a gender identity issue:
CAH 46, XX raised female N=95: “ten showed serious gender identity problems, five made a gender change”
CAH 46,XX raised male N=14: “Of them three identified as females or were gender dysphoric.”
PAIS 46,XY N=77: “77 PAIS cases identified as 12 years of age or older, (43 assigned female neonatally or physician imposed reassigned female before age 18 months, and 34 assigned male neonatally or physician imposed reassigned male before age 18 months), nine opted to change their gender later in life or developed gender dysphoria. Gender changes were from male to female in five cases and three were from female to male. All gender changes took place in adulthood. One female raised PAIS patient developed gender dysphoria but did not change her gender”.
“Total: Of all the female-raised 46,XY subjects with different DSD (n = 260) described in this review, 42,3 % (n = 110) developed gender identity problems in adolescence or adulthood. Of the male-raised 46,XY subjects with different DSD (n = 436) described in this review, only 0.2 % (n = 1) possibly developed gender identity problems. Of the male-raised 46,XX subjects with CAH (n = 14), 21.4% (n = 3) developed problems. Of the female raised 46,XX subjects with CAH (n =217), 4.6 % (n = 10) developed serious gender identity problems.”
de Vries A, Doreleijers T, Cohen-Kettenis P. Disorders of sex development and gender identity outcome in adolescence and adulthood: understanding gender identity development and its clinical implications. Pediatric Endocrinology Reviews. 2007;4(4):343-351. https://www.ncbi.nlm.nih.gov/pubmed/17643082
The findings regarding psychosexual development, however, clearly demonstrate that boys with hypospadias suffer from negative genital appraisal and sexual inhibitions.
The findings on the significance of medical factors are likewise inconsistent. Overall, they suggest that medical characteristics bear a rather small influence on the psychosocial and psychosexual outcome. It is important to note that there is no empirical evidence that corrective surgery at the youngest possible age leads to a better psychological development. Thus, empirical results do not support the early surgical interventions, which pediatric urologist recommend for (APA, 1996; Zavitsanakis & Gougoudi, 2004).
Schönbucher VB, Weber DM, Landolt MA. Psychosocial adjustment, health-related quality of life, and psychosexual development of boys with hypospadias: a systematic review. Journal of pediatric psychology. 2008;33(5):520-535. https://doi.org/10.1093/jpepsy/jsm098
2009 Schützmann et al. DSD (N=37): 17ß-HSD (n=2), 5a-RD (n=3), CAIS (n=5), PAIS (n=6), GD (n=10), CAH (n=11)
“Our results suggest that adults with DSD are markedly psychologically distressed with rates of suicidal tendencies and self-harming behavior on a level comparable to non-DSD women with a history of physical or sexual abuse, but sample recruitment procedures do not permit a firm generalization.”
“Seventeen (46%) participants reported lifetime suicidal thoughts; 5 (29%) of them were born with ambiguous external genitals. However, the impact of presence of ambiguous external genitals at birth was not significant. The presence of suicidal thoughts was independent of age, age at first genital surgery, and age at gonadectomy, but significantly linked to the presence of gonadectomy with 23% (N = 3) of persons without gonadectomy and 61% (N = 14) of persons with gonadectomy reporting suicidal thoughts.”
Schützmann K, Brinkmann L, Schacht M, Richter-Appelt H. Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development. Archives of sexual behavior. 2009;38(1):16-33. https://doi.org/10.1007/s10508-007-9241-9
All participants reported that they experienced psychological problems and distressing feelings in response to the unexpected virilizing of their bodies during puberty. Anne, Barbara, and Gina explicitly remembered worrying about stability of their gender identity and gender role. Anne had experienced “irritations about my gender role,” Barbara remembered “doubts about my identity as a girl,” and Gina went through “identity problems due to being seen as a man by others.” Claudia wrote that she was unhappy about her male appearance. Fiona reported thoughts of suicide due to the discrepancy between her assigned gender and outer appearance. Anne, Barbara, and Daniela reported problems of social withdrawal. In addition, Daniela described feelings of shame and being “an outsider.” Anne recalled loneliness and helplessness. Anne and Daniela had also experienced increased insecurity. Emily described that she had developed depression and eating disorders during her youth.
Schweizer K, Brunner F, Schützmann K, Schönbucher V, Richter-Appelt H. Gender identity and coping in female 46, XY adults with androgen biosynthesis deficiency (intersexuality/DSD). Journal of Counseling Psychology. 2009;56(1):189-201.
Androgen Insensitivity Syndrome, 5α-Reductase-2 Deficiency, and 17β-Hydroxysteroid Dehydrogenase Deficiency
“…self-harming behavior, and suicidal tendencies are prevalent in some samples of women with CAIS recruited from physicians or support groups”
“Self-reported psychological distress as determined by responses to the BSI, self-harming behavior, suicidal tendencies, and suicidal attempts is observed in people affected by PAIS—whether reared male or female [12–14]. In a long-term followup study of adults with PAIS, psychological counseling for problems such as difficulty with family members, depression, and substance abuse was commonly reported during interviews—once again regardless of male or female rearing.”
“A study of 15 adults reared male found that none had ever engaged in penile-vaginal intercourse and all experienced severe sexual dysfunction .”
Medicalization: “It is important to focus on QoL factors for persons with a DSD diagnosis because parents ask questions such as How will my child perform in school? Will my child establish friendships? Will my child have a career? Will my child fall in love? Parents also want to know how their children will feel about their DSD diagnosis. In short, parents want information about their affected child’s future QoL.”
More medicalization: “In conditions in which GI/R does not always develop in concordance with sex of rearing—such as PAIS, 5α-RD-2 deficiency, and 17β-HSD-3 deficiency—a better understanding of factors that influence QoL may help to explain the developmental trajectory of GI/R in people for whom GI/R development does not match their initial gender assignment”
Wisniewski AB, Mazur T. 46, XY DSD with Female or Ambiguous External Genitalia at Birth due to Androgen Insensitivity Syndrome, 5-Reductase-2 Deficiency, or 17beta-Hydroxysteroid Dehydrogenase Deficiency: A Review of Quality of Life Outcomes. International journal of pediatric endocrinology. 2009;2009. https://doi.org/10.1155/2009/567430
Eleven of 80 patients had undergone surgery in the past; six of these 80 women had received dilator training elsewhere, and four were sexually active. Sixty-three of 80 patients had not undergone any previous treatment. Seventeen were having satisfactory sexual intercourse, 16 were having unsatisfactory sexual intercourse, and 26 had never been sexually active; for four women, no information had been recorded. A total of 32 patients underwent vaginal dilator treatment, and 25 completed the therapy.
Participants reported better overall physical health and poorer overall mental health compared with normative data. Anxiety levels were higher, especially for women who had undergone vaginal treatment. Sexual wellness and function scores were poor.
Liao L-M, Conway GS, Ismail-Pratt I, Bikoo M, Creighton SM. Emotional and sexual wellness and quality of life in women with Rokitansky syndrome. American Journal of Obstetrics and Gynecology. 2011;205(2):117. e111-117. e116. https://doi.org/10.1016/j.ajog.2011.03.013
Compared with the nonclinical group, persons with 46,XY DSD more often had no partner (P = 0.056), felt more insecure in social (MdnDSD = 17.0, Mdncomparison = 12.0, P = 0.001) and sexual situations
(MdnDSD = 17.0, Mdncomparison = 11.0, P = 0.006), had more sexual problems (MdnDSD = 4.0, Mdncomparison = 3.0, P = 0.001), and were less satisfied with overall sex life (MdnDSD = 3.0, Mdncomparison = 4.0, P = 0.000) and sexual function (MdnDSD= 4.0, Mdncomparison = 4.0, P = 0.000). Results were inconsistent with regard to sexual activity history (e.g., previous sexual experience). Participants who underwent genital surgery showed less dyspareunia (P = 0.027) but more fear of injuries during intercourse (P = 0.019) than those whose genitals were left unaltered.
SexQoL of persons with 46,XY DSD may be impaired.
Schönbucher V, Schweizer K, Rustige L, Schützmann K, Brunner F, Richter‐Appelt H. Sexual quality of life of individuals with 46, XY disorders of sex development. The journal of sexual medicine. 2012;9(12):3154-3170. https://doi.org/10.1111/j.1743-6109.2009.01639.x
“Those interviewees who were aware of their condition at a young age all found that their condition had an impact during their school years. Most of them withdrew for a while, were afraid to be open towards others, adapted their behaviour and felt different or lonely. This resulted in a negative experience of school, reduced social interaction with classmates and anxiety about being bullied.”
“In chapters 3 and 4 we have shown that intersex/DSD not only has physical consequences, but can also impact on personal experiences and social interaction with others. The interviewees with intersex/DSD do not find it easy to be open towards others about their condition. They often think carefully about who they open up to and what they tell them. They also adapt their behaviour or avoid certain situations so that their condition remains hidden. Intersex/DSD can be problematic for relationship formation, a person’s self-image as a partner or the ability to fulfil the desire to have children.
There is embarrassment and a fear of negative reactions. Those reactions stem mainly from ignorance, embarrassment and lack of understanding. Most of the persons interviewed with intersex/DSD do not really blame those in their social environment for this and almost none of them seem to associate negative reactions from others with nonacceptance or discrimination. Intersex/DSD can however cause people to feel different, lonely and not understood. This may be related to condition-specific consequences, self-acceptance or actual or expected negative reactions, and the fact that it is not always possible to share concerns among those close to them.”
“psychological distress might be an issue for these individuals and therefore should be considered in treatment and counselling”
“A correlation between psychological distress and time span from first suspicion to diagnosis was found in women with MRKH”
“Suicidal attempts were reported by 2 persons in the CAIS sample and by 4 persons in the MRKHS sample.”
Krupp K, Fliegner M, Brunner F, Brucker S, Rall K, Richter-Appelt H. Quality of life and psychological distress in women with Mayer-Rokitansky-Küster-Hauser syndrome and individuals with complete androgen insensitivity syndrome. Open Journal of Medical Psychology. 2014;3(3):212-221. https://doi.org/10.4236/ojmp.2014.33023
2014 Van Rijn et al. Klinefelter (n=34) & Trisomy X (n=26)
Even though behavioral outcome in children with an extra X chromosome may be variable, there is empirical evidence suggesting that on average children (and adults) with an extra X have an increased vulnerability for social dysfunction.
The reported social difficulties in boys and men include shyness, social withdrawal, social anxiety, difficulties in peer relationships, social impulsivity, communication difficulties, impaired adaptive skills, reduced social assertiveness, emotion regulation problems and difficulties in reading social signals from others such as facial expressions, gaze direction and tone of voice (Bishop et al. 2011; Boone et al. 2001; Geschwind and Dykens 2004; Ratcliffe 1999; Ratcliffe et al. 1991; Robinson et al. 1991; Stewart et al. 1991; Tartaglia et al. 2010a; van’t Wout et al. 2009; van Rijn et al. 2006, 2007, 2008; Visootsak and Graham 2009).
[…] the extra X group showed more difficulty in cooperating with others, being assertive in social situations, taking social responsibilities, and exerting self control in social situations than their typically developing peers.
[…] children with an extra X chromosome displayed increased levels of social anxiety compared to typically developing children. This was evident in situations involving social interactions as well as situations in which physical appearance, intellectual abilities or physical abilities were at stake, or in which social desirability played a role.
van Rijn S, Stockmann L, Borghgraef M, Bruining H, van Ravenswaaij-Arts C, Govaerts L, et al. The Social Behavioral Phenotype in Boys and Girls with an Extra X Chromosome (Klinefelter Syndrome and Trisomy X): A Comparison with Autism Spectrum Disorder. Journal of autism and developmental disorders. 2014;44(2):310-320. https://doi.org/10.1007/s10803-013-1860-5
2015 D’Alberton at al. Women with 46,XY DSD (N=43)
“About half of the women with 46,XY DSD (51%) lived with at least one parent, 21% lived alone or with housemates, and 28% had a new family (partner, husband), whereas the figure among Italian females aged 20–60 years was 56% (P = 0.000) (http://dati.istat.it).”
“Fourteen individuals were married or living with a partner; four women were separated or widowed, and 22 [women out of 43] had never married nor lived with a partner. This information was missing for four participants.”
“Regarding the use of psychiatric drugs, eight individuals did not respond to the question about whether they had had pharmacological therapy, whereas 11 persons declared they had (31.4%), and this percentage is higher than in the general Italian female population between 15 and 65 years (∼12%) (D.R. Potente, Italian Survey 2010–2011, National Council of Research, pers. comm.)”
“For the psychological and behavioral aspects analyzed by ABCL, as already reported [24,25], we found that the individuals with 46,XY DSD showed borderline median scores for IS and ES. In agreement with other studies [19,20], they were also more likely to be depressed and anxious, showed more withdrawal and aggressive behavior, and had more thought and attention problems than the women in the comparison group. Assessed together, these data suggest that persons with 46,XY DSD may have higher psychological distress than the general female population.”
“[they have] statistically higher scores than the comparison group for depression, anxiety, internalizing and externalizing problems.”
D’Alberton F, Assante MT, Foresti M, Balsamo A, Bertelloni S, Dati E, et al. Quality of Life and Psychological Adjustment of Women Living with 46, XY Differences of Sex Development. The journal of sexual medicine. 2015. https://doi.org/10.1111/jsm.12884
“Twenty-three patients (mean age 38 yrs) consulted the psychologist with the following reasons: need for support in accepting TS related limitations in daily life (70%), low self esteem (55%), non assertiveness (45%), lack of social support (25%), and infertility related emotional problems (10%).”
“Our study confirms that many TS women experience difficulties in regards to acceptance of limitations related to TS and low self esteem. Remarkably, emotional problems related to infertility were mentioned by only a small minority.”
In particular, 17.1% of KS obtained just the primary school degree and only 2.4% the university one (vs. 0% and 75%, respectively).
Smoking habit was more often reported in KS (KS = 37.0% vs. HC = 11.6%)
KS subjects reported higher SCL-90-R Positive Symptom Distress Index (PSDI), and subscale scores as follows: SCL-90 Obsession-Compulsive (O-C), and SCL-90-R Somatization (SOM).
KS subjects showed a higher frequency of Axis I Psychiatric Disorders according to DSM-IV criteria (30.4% vs. 7.0%), which was due to a higher prevalence of Mood Disorders.
Considering BUT, the KS group showed significantly higher uneasiness related to genitals
Considering hypersexuality, the KS group reported significantly higher Sexual Addiction Screening Test (SAST) scores.
When paraphilic fantasies and behaviors were assessed, KS subjects showed a higher frequency of voyeuristic fantasies […], during masturbation (52.2% vs. 25.6%).
Despite our finding lower levels of TIQ in KS, in line with previous studies , 47,XXY individuals were not, on average, intellectually disabled.
Fisher AD, Castellini G, Casale H, Fanni E, Bandini E, Campone B, et al. Hypersexuality, Paraphilic Behaviors, and Gender Dysphoria in Individuals with Klinefelter’s Syndrome. The journal of sexual medicine. 2015;12(12):2413-2424. https://doi.org/10.1111/jsm.13048
“In 2015, the “Australians born with Congenital Variations in Sex Characteristics (Intersex/DSD/ hormonal, chromosomal or other biological variations/ conditions)” anonymous survey was conducted online, gathering data on 272 people with intersex variations. Participants ranged in age from 16-85+, from all states of Australia in proportion to the broader population, and a fifth lived internationally. Only a quarter of participants rated their overall experience at school positively. The overwhelming majority of participants (92%) did not attend a school with inclusive puberty/sex education. Overall, 18% of people with intersex variations had only had a primary school education – a larger portion than the general Australian population (2%). Many participants (66%) had experienced discrimination ranging from indirect to direct verbal, physical or other discriminatory abuse. Wellbeing risks were high, as documented in the next section. A key finding of this study was that most people with intersex variations had not told school staff about their variation, whilst just over half had told their classmates. Principals were the least likely people in a student’s life to be told about their intersex variation overall; further they were the most likely to be unsupportive.”
Jones T, Hart B, Carpenter M, Ansara G, Leonard W, Lucke J. Intersex: Stories and Statistics from Australia: Open Book Publishers; 2016. ISBN: 978-1-78374-208-0, https://doi.org/10.11647/OBP.0089
2017 Bennecke et al. DSD (N=110): CAH (n=44), XY females (n=39), XY males (n=10), other (n=9)
“In this study, nine participants (8.2%) described themselves as a gender other than male or female. They rated their HRQoL and psychological distress as similar to the rest of the cohort. This observation indicated that identification with a gender outside or overriding male or female dichotomy is not associated with impaired QoL or psychological distress.”
“In this study, a considerable difference between psychological and physical well-being was identified in a cohort of 110 adults with various DSD conditions. Participants reported overall higher physical HRQoL, normal mental HRQoL but high psychological distress (42.7%) measured by SF-36 and BSI accordingly.”
Bennecke E, Thyen U, Grüters A, Lux A, Köhler B. Health-related quality of life and psychological well-being in adults with differences/disorders of sex development. Clinical endocrinology. 2017;86(4):634-643. https://doi.org/10.1111/cen.13296
45% reported suicidal thoughts at least at one point in their lives.
Quality of parental care and having had a best friend correlated positively with adult outcome, whereas treatment experiences correlated with aspects of impaired adjustment.
Schweizer K, Brunner F, Gedrose B, Handford C, Richter-Appelt H. Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being. Journal of Pediatric Psychology. 2017;42(5):504-519. https://doi.org/10.1093/jpepsy/jsw058
2018 Falhammar et al. Turner (n=301), Klinefelter (n=224), XY-DSD (n=222), XX-DSD (excluding congenital adrenal hyperplasia (CAH) and 46,XX males)(n=21), 46,XX-CAH (n=226), and 45,X/46,XY (n=45)
Psychiatric disorders were reported in 45.2% (10.6% in controls)
Suicide attempt in 6.8% of all individuals with DSD (1.8% in controls)
Suicide attempt rates in 5.0% of the DSD women (2.0% on controls) and 10.7% of the DSD men (1.1% in controls).
The high rate of suicide attempts is of great concern. Moreover, some individuals (3.9%) preferred not to answer this question which may for some reflect that they had made a suicide attempt previously but did not want to disclose this or that they had had suicide thoughts. Suicide and attempts have hardly been studied previously in DSD.
In a Swedish registry study females with CAH had a lower suicidal rate than the controls (0.9% vs. 2%)(18), while in males with CAH the rate was higher than in controls (2.8% vs. 1.2%)(24), thus much lower than the 6% found among the individuals with CAH in the present study. Probably this reflects that the current study reports on self-reported suicidality while the previous registry studies gave diagnosis rates.
62.7 percent of the 1040 participants experience their own health as good/very good (controls: 76.5%), 28.7% as fair (controls: 17.5%) and 8.6% as bad/very bad (controls: 6.0%). At the same time, 51% experience long-term health problems (controls: 24.5%). 38.6% of the participants say that health problems in the past year have limited their daily lives (controls: 13.8%).
The study shows that a large number of health problems occur much more frequently among the group of intersex persons than among the control group:
Many of the health problems mentioned above are diagnosis-dependent. In one diagnosis, the problems will occur much more frequently than mentioned here, while in other diagnoses, the same symptoms may be absent entirely. The article is published as Open Access and contains an elaboration of this information into six subgroups of DSDs.
The authors conclude:
“In conclusion, general health seemed overall good in individuals with DSD. However, many medical problems were reported, especially in KS, with a clear increased risk for both somatic and psychiatric morbidities in individuals who were diagnosed later. Knowledge on the specific health issues that might occur in the different diagnoses should be included in the patient education programs, especially during transition. The DSD expert centers have to tailor follow-up programs according to the needs of the individuals and the different diagnostic groups. Therefore, lifelong follow-up by multidisciplinary teams is necessary.”
Falhammar H, Claahsen-van der Grinten HL, Reisch N, Slowikowska-Hilczer J, Nordenstrom A, Roehle R, et al. Health status in 1040 adults with disorders of sex development (DSD): a European multicenter study. Endocrine Connections. 2018. https://doi.org/10.1530/ec-18-0031
Our position: It is unclear why the researchers conclude that the general health of the persons interviewed can be qualified as good. The data on the various health complaints seem to contradict this conclusion. In addition, many of the reported health problems may have a negative impact on the ability to work. As health is more than the absence of disease, the social consequences of health problems cannot be ignored. The exclusive role that the multidisciplinary teams claim in supervising intersex persons is a denial of the role that society must play in preventing suicide attempts and psychological problems as a result of a DSD diagnosis, and in raising awareness of the fact that intersex can be a reason for discrimination.
We agree with the authors that the percentage of suicide attempts is a serious problem. Although people with such thoughts should be given all the help they need, it is important to recognize that psychosocial support can only combat the symptoms. To prevent new generations from having suicidal thoughts, society needs to change. Doctors in multidisciplinary centres can contribute to this, but they will not be able to change society themselves.
2018 Kreukels et al. Turner (n=325), Klinefelter (n=219), XY-DSD women with androgen effect (n=107), XY-DSD women without androgen effect (n=63), XY-DSD men (n=87), 46,XX women CAH (n=221)
Gender changes were reported by 5% of participants,
Only in 1% did the gender change take place after puberty and was likely initiated by the patient.
With with Klinefelter and Turner syndromes excluded, gender change was reported in 12%, (2% after puberty).
39 participants (4%) reported gender variance: between male and female, a gender other than male or female, or gender queer, alternating gender roles,
or a gender expression that differed from the reported gender. This group had lower self-esteem and more anxiety and depression than the other participants.
Data: Kreukels et al. 2018
Kreukels BPC, Köhler B, Nordenström A, Roehle R, Thyen U, Bouvattier C, et al. Gender Dysphoria and Gender Change in Disorders of Sex Development/Intersex Conditions: Results From the dsd-LIFE Study. The Journal of Sexual Medicine. 2018;15(5):777-85. https://doi.org/10.1016/j.jsxm.2018.02.021
2018 Khorased et al. CAH (n=22), 5α-RD-2 (n=20), CAIS (n=19)
All participants were assigned female at birth. Ten patients (16.4%) transitioned to the male gender.
Overall, 68% of patients had one or more lifetime Axis I disorders, including 63.6% of the CAH participants, 90% of 5α-RD-2 participants, and 52.6% of the CAIS participants.
The most commonly observed were affective disorders (27.9%), gender identity disorder (27.9%), and anxiety (16.4%).
This might be due to the fact that patients with DSD conditions are mostly treated medically and their mental health is often superficially addressed in developing countries such as Iran, at least in the past.
Khorashad BS, Aghili Z, Kreukels BPC, Reid AG, Roshan GM, Hiradfar M, et al. Mental Health and Disorders of Sex Development/Intersex Conditions in Iranian Culture: Congenital Adrenal Hyperplasia, 5-α Reductase Deficiency-Type 2, and Complete Androgen Insensitivity Syndrome. Archives of sexual behavior. 2018. https://doi.org/10.1007/s10508-017-1139-6
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