Too often, autistic people and people with learning disabilities don’t receive the medical care and treatment they need for illnesses and conditions. Unfortunately, when we look at the menopause, things are no different.
In the UK, there are 13 million women going through menopause right now – including autistic women and women with learning disabilities[1]. Despite this, a lack of knowledge and awareness of the impact of menopause means too many women are missing out on support.
Some autistic women and women with learning disabilities have difficulties easily communicating symptoms. Carers or family members who support them may not notice changes or fully understand the causes of them, particularly those that develop over time.
Communicating pain or discomfort is at times so difficult that we see increased behaviour or distressed actions as a means to convey feelings. This can lead to misdiagnosis and in many cases overmedication, or the incorrect medication being given.
The menopause is a prime example of a condition that has not been considered fully for autistic women and women with learning disabilities and they are likely to experience diagnostic overshadowing and unequal care and treatment. As a consequence, these women can experience the menopause isolated, scared and without support.
In recent years, the profile of menopause has been raised across society at large and we are starting to see greater recognition for autistic women and women with learning disabilities too.
At Bild, we champion tackling health inequalities to support people to live long, happy and healthy lives. As part of this, we’ve worked with leading GP and menopause specialist, Dr Louise Newson, who has been sharing her expertise to ensure all women receive the support they deserve.
Dr Louise Newson
Put simply, menopause is when the ovaries stop producing eggs and levels of hormones fall. This includes oestradiol (the most beneficial form of oestrogen), progesterone and testosterone. It’s also when a woman hasn’t had a period for 12 months.
As a menopause specialist, it concerns me greatly that limited research exists on how menopause affects autistic women and women with learning disabilities.
We know there are challenges generally with awareness, for example understanding in detail what menopause and perimenopause is, and how it presents. The situation isn’t helped by numerous unhelpful myths that have been circulating for decades.
Some examples of myths include:
Women in your care may find it difficult to communicate their thoughts and feelings so familiarising yourself with the symptoms of menopause and identifying any changes in behaviour is important.
The type and severity of symptoms associated with perimenopause and menopause vary from person to person, but can include:
Women with learning disabilities and autistic women already face physical and mental health challenges, and often experience social isolation. This adds an extra layer of complexity in accessing menopause treatment and care.
In my time as a GP and menopause specialist, I have heard numerous examples of women recounting difficulties accessing support from healthcare professionals. Many women have believed their symptoms were related to their autism, when they were actually a consequence of their changing hormone levels.
Knowledge is key if we are going to better support menopausal autistic women and women with learning disabilities. Professionals and carers don’t have to have all the answers, but simply thinking ‘could it be menopause?’ could make all the difference.
As well as being aware of menopause symptoms, it’s also useful to have a working understanding of treatments to help support women with learning disabilities and autism.
HRT is the first-line treatment to manage menopause symptoms and can help protect against the long-term health risks associated with low hormones. HRT stands for hormone replacement therapy and, as the name suggests, it replaces the hormones that fluctuate and fall during the perimenopause and menopause.
HRT is available in many different types of doses and methods, as the hormones needed vary from woman to woman.
All types of HRT will usually contain oestrogen. If a woman still has a uterus, they will need to take progesterone (known as micronised progesterone or a synthetic progestogen) with the oestrogen, as taking oestrogen on its own can thicken the lining of the womb.
HRT containing oestrogen alone is known as oestrogen-only HRT. HRT containing both oestrogen and progesterone is known as combined HRT. Replacement oestrogen can be given in various ways – either as a skin patch (which looks a bit like a plaster) or as a gel, spray or tablet to swallow.
Progesterone is available as a capsule to swallow, and an alternative way to receive a progestogen is to have the Mirena intrauterine coil, which is also a very effective contraceptive.
For women who are experiencing low sex drive and HRT alone is not helping, testosterone can often be beneficial (in addition to the oestrogen). In my clinical experience, testosterone can also help with other symptoms, such as fatigue, brain fog and low energy. This is also available in a gel or cream, and, while it is not currently licensed as a treatment for women in the UK, many NHS and private healthcare professionals prescribe it ‘off-license’.
Having the right dose and type of HRT and testosterone usually improves symptoms, as well as future health. There are many more benefits than risks of taking HRT and testosterone but it is important to consider all options carefully.
Emma Fraser is 43 years old and is currently experiencing symptoms related to perimenopause.
Emma, who has a learning disability and Cerebral Palsy, knew something wasn’t right.
‘My periods became heavier and I was starting to experience mood swings. I visited my GP and got referred to a Gynaecologist who asked me to create a chart tracking my moods and periods. I need to return to the clinic in a few months for a review so I haven’t been offered any medication yet, but I have found things that are really helping me through this change.”
Emma’s top three tips are:
Menopause and the impact it brings is still not perceived as an easy, or essential, topic to discuss. Just as other issues that are seen as taboo for people with learning disabilities, such as sex or dying, open discussions and the sharing of information is often neglected.
We shouldn’t be afraid to talk about periods or the menopause with people we support. These are natural occurrences for women, and we need to know what is normal in order to understand when a variation occurs.
Likewise, we need to raise more awareness for autistic women and women with learning disabilities themselves about menopause. Initiatives such as menopause cafes, which provide an open environment for women to come together and support each other as they experience the menopause, may be useful for people with learning disabilities too.
In a fair and equal society, all women should have access to the same opportunities and support. Supporters of people with learning disabilities need to become more literate about, and confident in, discussing issues such as menopause in a support setting.
By developing a health literate culture at work, supporters can ensure that the people they help get access to the right care and treatment that they need, at the right time.
Lindsey Allen is Programme Lead for health inequalities and coproduction at Bild – a national charity that works in partnership with people with learning disabilities and autistic people drawing from research, evidence and best practice to ensure people are at the heart of their support.
Dr Louise Newson is a GP and Menopause Specialist and founder of Newson Health, the balance menopause support app and the CPD-accredited Confidence in the Menopause online education programme.
[1] All Party Parliamentary Group on Menopause (2022) https://menopause-appg.co.uk/mps-call-on-government-to-address-postcode-lottery-of-menopause-treatment-in-new-report/.
[2] https://journals.sagepub.com/doi/10.1177/1362361319901184 and https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12477
