Autistic women more likely to suffer severe menopause yet struggle to access care

Women with autism and learning disabilities are struggling to access menopause support in the UK despite many experiencing more severe or early symptoms, experts have told i.

Research from the University of Sunderland reveals there is a severe lack of resources for health professionals when dealing with the way the menopause affects women with learning disabilities and autism.

According to experts, women with learning disabilities can go through earlier menopause, and those with autism may have more pronounced symptoms. However, many are not routinely screened or asked about their experiences.

What is the menopause?

Menopause is reached 12 months after your periods have ended. This usually happens between the ages of 45 and 55.

Perimenopause is the time from the start of menopausal symptoms until after someone has experienced their last period.

Menopause is when periods stop.

Post menopause is the time after the menopause when someone hasn’t experienced a period for over a year.

Experts told i that while menopause as a topic has started to be more widely discussed, the experience of people with learning disabilities and autistic people is still not being factored into these discussions.

The issue was the focus of a survey launched across the North East and Cumbria, asking healthcare workers for their view on the subject.

Professor Yitka Graham, head of Sunderland University’s Helen McArdle Nursing and Care Research Institute, told i most studies published on the issue focus on clinical aspects, instead of looking at how the menopause affects women with learning disabilities and their experiences.

She said the findings will be used to empower women with learning difficulties to reduce inequalities in healthcare.

Professor Graham said awareness of menopause can be low for this group of women, with research showing there is also a lack of resources available for carers and health professionals.

Autism and the menopause

Autistic people may experience more severe menopause symptoms, through an increase in difficulties associated with both their autism and the menopause combined.

According to the National Autistic Society, research on autistic people’s experiences of menopause is very limited.

Research suggests menopause can affect autistic people in a number of ways, including:

• intensified sensory sensitivities
• difficulty with emotional regulation
• difficulty with executive function, for example planning, focusing and multitasking
• increased difficulty with social interaction and communication
• difficulty with the lack of predictability around your bodily or sensory experience
• difficulty identifying internal states, such as hunger and temperature (this is known as “atypical interoception”)
• difficulty recognising and communicating emotions (known as “alexithymia”)
• difficulty seeking support due to alexithymia, atypical interoception and communication difficulties.

Some autistic people report that menopause played a role in discovering that they are autistic, as their autistic characteristics became more apparent during menopause or perimenopause.

Learning disabilities and the menopause

According to MacIntyre, a charity which provides support for people with learning disabilities, evidence suggests people with learning disabilities often have an earlier menopause.

The average age for menopause in the general population is 51, but people with Down’s syndrome, for example, could reach the menopause by age 44.

Women with cerebral palsy may also experience menopause earlier and experience more pronounced symptoms. 

Research from Growing Old with Learning Disabilities also found that:

• Most people with learning disabilities who were not yet menopausal did not know that their periods would eventually cease.
• Most people who were already menopausal knew that periods eventually stopped, but did not know why this happened or what it meant.
• Most did not know anything about others’ experiences of menopause, for example peers, friends, family who can add perspective and experience to discussions.

Emma Fraser, 43, from Leeds has cerebral palsy. As a result, she has learning difficulties and the movement on the right hand side of her body has been affected.

Ms Fraser told i she contacted her GP when she began experiencing heavy periods. She was told she was going through perimenopause and was put on the contraceptive pill which helped with symptoms.

Now, she is experiencing erratic bleeding so is planning to seek further medical support.

She said: “I could feel something going on inside me, but I wasn’t sure what it was. It was making me feel more anxious and I hated it. The doctor told me it was perimenopause.

“I just feel more anxious. Things which I would have taken in my stride a couple of years ago feel like a massive disaster.”

Ms Fraser came up with a traffic light system to let people know when she is struggling. She has urged other people with learning disabilities to seek help when struggling with menopause or perimenopause.

Dr Megan Bowes, health and wellbeing lead at charity Dimensions, which supports people with learning disabilities and autism, told i that women with autism and learning disabilities often experience barriers in accessing healthcare support.

“Women with learning disabilities tend to get menopause at a younger age, therefore the symptoms can be missed,” she said.

“Emma can communicate well, so was able to tell her support staff she wasn’t feeling well and that things were changing and they supported her to go to the GP.

“But a lot of women don’t have those communication skills and can’t tell their support workers or colleagues that they’re having these changes.

“They might just feel more anxious and that can come out as behaviours of distress. So their support colleagues might think they need something for these behaviours and take them to the GP who might put them on antidepressants or anxiety medication.

“They might not even consider perimenopause as the women may be in their late thirties or forties. As a result, they won’t be offered hormone replacement therapies.”

Read Next

Dr Bowes said women with learning difficulties often experience a lack of understanding from professionals who cannot understand how some women communicate and might struggle to diagnose their symptoms.

She told i it is important for health professionals and support staff to record any changes they notice so they can get the healthcare and support they need.

She highlighted that Dimensions as a charity has taken steps to prepare women for the menopause – including arranging appointments when support staff who are well known by the woman are available to attend with them, providing easy to read resources on the topic and requesting written notes and longer appointment times.

“Knowledge and awareness of this issue needs to be increased,” Dr Bowes added. “Menopause as a topic isn’t spoken about enough, let alone when it comes to people who can’t communicate properly about it.

“There needs to be more awareness among health professionals on what symptoms to look out for.”