The Role of Diagnosis

The Role of Diagnosis

Do I need a diagnosis to receive gender affirming healthcare?

Under some healthcare services, access to gender affirming treatment may require a formal diagnosis of gender dysphoria or gender incongruence. While a diagnosis might be useful to qualify for medical treatment under these services, there are problems with this approach to care. The way in which diagnosis is used by this approach has been perceived as presenting an unnecessary barrier to healthcare access and as pathologising trans people.

At GenderGP, we work under an informed consent model of care. While making a diagnosis is still part of of the process, the main focus of the model is on how we can help you achieve your gender affirmation goals. This leaflet provides information about the roles of diagnosis in medicine, the problems with how diagnosis is often used in gender affirming healthcare, and how informed consent model of care.

What is the role of diagnosis?

Diagnosis serves a variety of purposes in medicine. For many health problems, a diagnosis can inform treatment decisions, aid communication between healthcare professionals, classify symptoms, and legitimise access to healthcare resources (Maung, 2019b). Usually, in medicine, these various purposes are supported by two important roles of diagnosis:

  1. A diagnosis usually provides an explanation of what is wrong. For example, a diagnosis of heart disease explains that the person’s chest pain is caused by reduced blood flow to the heart.
  2. A diagnosis usually involves a judgement that the person has a genuine disorder. For example, a diagnosis of depression indicates that the person does not just have ordinary sadness, but has a mental health condition that deserves treatment.

For many health conditions, a diagnosis is useful because it serves these roles. By explaining the cause of the symptoms and by judging the condition to be a genuine disorder, a diagnosis can justify the provision of appropriate medical treatment (Maung, 2017).

However, there are reasons why such a reliance on diagnosis may be inappropriate in gender affirming healthcare. First, a diagnosis of Gender Dysphoria/Incongruence does not really provide an explanation for anything, but just redescribes what the person already knows and feels about their own identity. Second, being transgender is not a disorder, but a healthy part of our diversity as a population (Suess et al., 2014).

These problems can be better understood by looking at how gender dysphoria/incongruence is usually diagnosed.

How is gender dysphoria/incongruence diagnosed?

Gender dysphoria/incongruence is usually diagnosed by assessing whether the person satisfies the formal criteria in diagnostic manuals. Under some healthcare services, the assessment is usually performed by a specialist doctor or psychologist, and might involve interviews with the person and with the person’s family.

There are two diagnostic manuals that are commonly used to diagnose gender dysphoria/incongruence. These are the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and the eleventh revision of the International Classification of Diseases (ICD-11). The diagnosis of gender dysphoria is used in DSM-5, while the diagnosis of gender incongruence is used in ICD-11. However, both are effectively similar and serve the same role.

What are the DSM-5 criteria for gender dysphoria?

The DSM-5 (American Psychiatric Association, 2013) defines gender dysphoria as follows:

  • A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics (or in young adolescents, the anticipated secondary sex characteristics);
  • A strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or in young adolescents, a desire to prevent the development of the anticipated secondary sex characteristics);
  • A strong desire for the primary and/or secondary sex characteristics of the other gender
  • A strong desire to be of the other gender (or some alternative gender different from one’s assigned gender);
  • A strong desire to be treated as the other gender (or some alternative gender different from one’s assigned gender);
  • A strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s assigned gender).

What are the ICD-11 criteria for gender incongruence?

The ICD-11 (World Health Organization, 2019) defines gender incongruence as follows:

  • Gender incongruence of adolescence and adulthood is characterised by a marked and persistent incongruence between an individual’s experienced gender and the assigned sex, which often leads to a desire to ‘transition’, in order to live and be accepted as a person of the experienced gender, through hormonal treatment, surgery or other health care services to make the individual’s body align, as much as desired and to the extent possible, with the experienced gender. The diagnosis cannot be assigned prior the onset of puberty. Gender variant behaviour and preferences alone are not a basis for assigning the diagnosis.

What are the problems with the diagnosis of gender dysphoria/incongruence?

You may notice that the above diagnostic criteria are largely made up of descriptions of the person’s feelings and desires to be accepted in their identified gender. Hence, a diagnosis of gender dysphoria/incongruence is not really supplying any new knowledge, but is just redescribing what the person already knows about their own gender identity. Furthermore, transgender people have diverse affirmation goals, and so a diagnosis of gender dysphoria/incongruence may not sufficiently capture the diverse needs of people seeking gender affirming healthcare.

Given that the diagnosis of gender dysphoria/incongruence is not really providing any further knowledge beyond what the person already knows, it is unclear whether it is serving any clinical purpose aside from being a formality. Hence, there is a worry that the requirement of a diagnosis presents an unnecessary barrier to access to treatment. As well as access to treatment being delayed by waiting for a diagnosis, people often have to undergo a lengthy assessment process where they feel like they have to “prove” that they are really transgender. This is problematic, because it seems to make the medical professional the arbiter of a person’s gender identity, rather than acknowledging the person’s first-person authority over their own experience.

Is gender dysphoria/incongruence a disorder?

Whether or not a condition is deemed a disorder is not a straightforward matter of fact, but also involves social value judgements about whether the condition is harmful, undesirable, or unacceptable (Bolton, 2000; Cooper, 2002; Maung, 2019a). A problem with the reliance on diagnosis in gender affirming healthcare is that it is perceived as pathologising the gender identities of trans people (Ashley, 2021).

This is especially apparent in DSM-5, which classifies gender dysphoria as a mental disorder. According to DSM-5, a mental disorder involves a “clinically significant disturbance in an individual’s cognition, emotion regulation, or behaviour that reflects a dysfunction in the psychological, biological, or development processes underlying mental functioning” (American Psychiatric Association, 2013). Previous editions of the DSM also pathologised forms of gender diversity. For example, DSM-III includes transsexualism and transvestic fetishism as mental disorders (American Psychiatric Association, 1980), while DSM-IV includes the diagnosis of gender identity disorder (American Psychiatric Association, 1994).

This is problematic, because it portrays transgender people as having a psychological disturbance or dysfunction. Such a portrayal is potentially stigmatising and contradicts the understanding that being transgender is a healthy part of our diversity as a population (Suess et al., 2014). Although many transgender people do suffer from mental health problems, these are understood as being due to factors such as prejudice, family rejection, and social inequality (Klein and Golub, 2016; Zwickl et al., 2021). Mental ill health is not an intrinsic feature of being transgender.

The recognition that being transgender is not a disorder is reflected in ICD-11. In the previous revision, ICD-10, transsexualism and gender identity disorder were included under “mental and behavioural disorders” (World Health Organization, 1992). However, these were removed in ICD-11. Instead, ICD-11 includes gender incongruence under “conditions related to sexual health”. It is no longer classified as a mental disorder.

While the ICD-11’s reclassification of gender incongruence is a positive step, it raises the question of what the purpose of the diagnosis is. If Gender Incongruence is not a disorder, then there seems to be no specific need for a doctor or a psychologist to diagnose it. Again, it would seem that a reliance on a diagnosis is presenting an unnecessary barrier to access to gender affirming treatment.

What is the informed consent model of care?

At GenderGP, we work under an informed consent model of care. This places less emphasis on diagnosis and allows transgender people to access gender affirming healthcare without having to undergo an unnecessarily lengthy assessment process (Schulz, 2018). Under the informed consent model of care, you are recognised as the expert of your own experience. This follows from the principle that you have first-person authority over your own experience and identity (Bettcher, 2009).

Hence, under the informed consent model of care, the purpose of the consultation is not to “prove” that the person is transgender. Whether the person is transgender is established simply by trusting the person’s first-person authority over their own gender identity. Rather, the aims of the consultation are:

  1. To work collaboratively with the person to understand their specific needs and establish how they can be helped to achieve their affirmation goals;
  2. To provide information about the benefits and risks of treatment in order to obtain informed consent from the person regarding the agreed treatment plan.

Access to treatment is granted based on the capacity of the person to consent to the treatment, not on whether the person can “prove” their gender identity. As well as enabling people to access gender affirming healthcare more quickly without unnecessary barriers, this model acknowledges that being transgender is not a disorder but a healthy part of our diversity.

References

American Psychiatric Association (1980). Diagnostic and Statistical Manual of Mental Disorders, 3rd edition. Washington, DC: American Psychiatric Association.

American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, 4th edition. Washington, DC: American Psychiatric Association.

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th edition. Washington, DC: American Psychiatric Association.

Ashley, F. (2021). “The Misuse of Gender Dysphoria: Toward Greater Conceptual Clarity in Transgender Health”. Perspectives on Psychological Science, 16: 1159–1162.

Bettcher, T. M. (2009). “Trans Identities and First-Person Authority”. In L. Shrage (ed.), You’ve Changed: Sex Reassignment and Personal Identity. Oxford University Press.

Bolton, D. (2000). “Alternatives to Disorder”. Philosophy, Psychiatry, and Psychology, 7: 141–153.

Cooper, R. (2002). "Disease". Studies in History and Philosophy of Biological and Biomedical Sciences, 33: 263-282.

Klein, A., and Golub, S. A. (2016). “Family Rejection as a Predictor of Suicide Attempts and Substance Misuse Among Transgender and Gender Nonconforming Adults”. LGBT Health, 3: 193–199.

Maung, H. H. (2017). “The Causal Explanatory Functions of Medical Diagnoses”. Theoretical Medicine and Bioethics, 38: 41–59.

Maung, H. H. (2019a). “Is Infertility a Disease and Does it Matter?” Bioethics, 33: 43–53.

Maung, H. H. (2019b). “The Functions of Diagnoses in Medicine and Psychiatry”. In Şerife Tekin and Robyn Bluhm (eds.), The Bloomsbury Companion to Philosophy of Psychiatry, 507–525. London: Bloomsbury.

Schulz, S. L. (2018). “The Informed Consent Model of Transgender Care: An Alternative to the Diagnosis of Gender Dysphoria”. Journal of Humanistic Psychology, 58 (1): 72–92.

Suess, A., Espineira, K., and Walters, P. C. (2014). “Depathologization”. Transgender Studies Quarterly, 1: 73–77.

World Health Organization (1992). International Classification of Diseases, 10th revision. Geneva: World Health Organization.

World Health Organization (2019). International Classification of Diseases, 11th revision. Geneva: World Health Organization.

World Professional Association for Transgender Health (2022). “Standards of Care for the Health of Transgender and Gender Diverse People, version 8”. International Journal of Transgender Health, 23: S1–S258.

Zwickl, S., Wong, A. F. Q., Dowers, E., Leemaqz, S. Y., Bretherton, I., Cook, T., Zajac, J. D., Yip, P. S. F., and Cheung, A. S. (2021). “Factors Associated With Suicide Attempts Among Australian Transgender Adults”. BMC Psychiatry, 21: 81.

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