Menstrual education for females with developmental disability

Education is the first stage of menstrual management. Females with developmental disability need to understand and manage their normal body functions in a hygienic and socially acceptable manner, with assistance when necessary.

Introducing usual menstrual management at the onset of puberty is imperative, as females with developmental disability may require an extended timeframe for education, and to adapt to changes to their body. As in the general population, many females dislike using sanitary products or are upset by the sight of blood.

Books and resources with simple illustrations are available for females, their family, carers, schools and general practitioners (GPs) to help explain changes that occur during puberty, see Resources to assist menstrual management for females with developmental disability. See also advice on reasonable adjustments to facilitate health care for people with developmental disability. With educational support, females with mild intellectual disability can generally manage their menstruation (with or without supervision). Females with severe intellectual disability can be encouraged to be involved in their menstrual management, or at least to tolerate assistance.

Supporting the development of self-care skills, and identifying with the rest of the female population, is important for developing self-esteem. Females with developmental disability are often pleased to reach menarche; evidence suggests that it makes them ‘feel normal’ to reach a developmental milestone at the same time as their peers.

The GP will often be asked questions by parents and carers about menstruation. See Responding to concerns about menstruation in a female with developmental disability for responses to concerns about menstruation in a female with developmental disability. The GP or practice nurse can assist a female with developmental disability to develop the skills to manage menstruation by:

  • giving a direct explanation of menstruation (eg bleeding that all females have each month from their vagina), and ensuring parents and carers repeat this regularly
  • teaching pad management (eg demonstrate by imitation or using an anatomically correct doll); some parents have reported allowing the female to pour red colouring on a clean pad has helped desensitise their daughter to menstrual blood
  • showing a female period underwear if she can’t tolerate pads
  • explaining that menstruation is private, and where to dispose of the soiled pads.
Figure 1. Resources to assist menstrual management for females with developmental disability.

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Resources for healthcare practitioners

Managing menstruation kit The University of Queensland, Queensland Centre for Intellectual and Developmental Disability

Menstrual management in adolescents with disabilities The Royal Children’s Hospital

Menstrual problems in women with intellectual disability Australian Prescriber

Supporting women: Information and resources for general practitioners supporting women with intellectual disabilities to manage their menstruation Centre for Developmental Disability Health

Resources for females, carers and significant others

Angelo F, Pritchard H, Stewart R. Special Girls’ Business. Melbourne: Secret Girls’ Business; 2005

Angelo F, Stewart R, Anderson H. Puberty and special girls. Melbourne: Secret Girls’ Business; 2010

Supporting women: Information and resources for carers supporting women with intellectual disabilities to manage their menstruation Centre for Developmental Disability Health

The Healthy Bodies toolkit Vanderbilt Kennedy Center (United States)

Note: NB1: This is not an exhaustive list.
Figure 2. Responding to concerns about menstruation in a female with developmental disability

Her milestones were all late, so will her periods be too?

Generally, no—onset of puberty and menarche for girls with developmental disability is mostly the same as in the general population. For exceptions, see Pubertal disorders associated with developmental disability and related conditions.

I’m worried she won’t be able to manage her periods. She doesn’t cope with the sight of blood.

Generally, if a female can manage toileting independently, she will be able to manage her periods. For females who need continence products, menstruation can be similarly managed. See Menstrual education for females with developmental disability for more advice.

There are simple medical options that can reduce or control periods—these may be considered if problems persist despite appropriate support and education.

I don’t want her to have any periods. Can she have a hysterectomy?

A hysterectomy would only be approved for menstrual management if uterine pathology is present, see Permanent sterilisation.

Can hormones be started before menarche?

Menarche doesn’t often result in a heavy period. Medically, waiting for menarche before considering management is necessary to confirm hormonal changes are occurring appropriately.

Final comment from general practitioner (GP)

Many parents have expressed the same concerns as you, but with good preparation and training, many girls with developmental disability are able to manage their periods.