09/03/2026
When we see a participant’s behaviour change, think sudden rage, sensory overload, or withdrawal, it's easy to look for environmental or "disability-related" causes. But what if the source is internal? Many of the female participants over 30 we support are reaching the age where perimenopause begins.
Let’s be honest: perimenopause is a complex, confusing transition. Even for women without disabilities, it is often incredibly difficult to articulate the strange changes they are experiencing. When we layer that on top of the lived experience of our participants, especially those with intellectual disability or communication challenges, that barrier becomes even higher. They cannot easily tell us, "I am experiencing phantom smells, my skin hurts, or I have unexplained anxiety." Instead, they might express that internal chaos through a change in behaviour.
Often, as their support system, we are the frontline observers; the vital link between a participant's daily experience and her medical care. If we notice unexplained changes, we should stop brushing them aside as "disability-related" or waiting for the women to come to us and articulate a health issue. Instead, we can:
☑️ Keep an eye out for sudden sensory rage, temperature dysregulation, complaints of phantom smells, or skin sensitivity; these are often hormonal, not behavioural.
☑️ Stop assuming a regular cycle (or lack thereof) means hormonal health. Many women have cycles suppressed by medication; this stops the bleeding, but the hormonal shifts still occur.
☑️ Stop being an observer and start (with permission) gathering the evidence she needs to be heard. Start keeping a log of all the symptoms she is experiencing, and be ready to use them as evidence.
☑️ Push back on a GP who dismisses symptoms as "part of her disability." The women you support have the right to the same standard of health care and hormonal management as any other woman receives. You may just have to demand it.
You do not need a medical diagnosis to make sensory adjustments, like offering noise-cancelling headphones, sensory-friendly clothing, or matching the intensity of her day to her current energy levels. These are all easy adjustments to offer to help her manage her day-to-day comfort while waiting for a formal assessment.
Perimenopause is real for every woman, and it shouldn't be a journey that a woman with disability needs to walk in silence, confusion or alone.
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