Getting your period for the first time. Not every (pre) adolescent thinks this is fun. This is especially the case for girls with autism. That’s right. If you have autism, you usually don’t like change very much. And a lot of things change during puberty. So it’s no surprise that getting your period is extra difficult if you have autism. The troubles start with mood swings due to hormonal changes. In addition, external changes – such as hair growth and breast formation – can be frightening. And it’s impossible to predict when you’ll bleed for the first time. Also after the menarche, there appear to be considerable differences between girls and women with and without Autism Spectrum Disorder (ASD). More on that later.

Education is important. But if you have autism, your development doesn’t always coincide with your real age. You can be 14 years old, for example, but function socially and emotionally like a five-year-old. The reverse is also possible: that you’re 5 years old, but can play chess at an adult level. This can be confusing for parents/guardians. It may seem, for example, that a child isn’t yet emotionally ready for The Conversation about sexuality and menstruation. But because physical developments follow the same pace as in children without autism, that first menstruation can suddenly be a fact.

About autism

But let’s start at the beginning. In the UK, there are around 700,000 autistic adults and children, according to the National Autistic Society. In the Netherlands, about 200,000 people have the Autism Spectrum Disorder (ASS) or ‘autism’. ASD manifests itself in many ways. Study the list of behavioural characteristics and you’ll surely recognise yourself in some of the signs. Something that also applies to the symptoms of premenstrual syndrome: it seems almost impossible to not suffer from anything at all – but that’s another story.

There’s no blood test or brain scan to diagnose ASD. You’ll only get the diagnosis if a psychologist or psychiatrist has determined that your behavioural characteristics cause problems; at school, at work, in your spare time, in relationships – or in all these areas at once. Characteristic for all forms of ASD is that the brain processes stimuli in a different way (something that’s also referred to with the umbrella term ‘neurodivergence’) and that ‘deviant’ behaviour isn’t unwillingness, but a typical case of powerlessness. You can achieve anything if you have autism. However, there is no ‘cure’ for it.

Gender gap

Scientists have long assumed that autism is four to eight times more common in men than in women. It’s now clear that the ratio is considerably less skewed; autism occurs ‘only’ three times more often in men. Provided that these figures are up to date. Because autism manifests itself differently in women and girls, the condition isn’t always recognised.

Research by the Dutch Autism Register (NAR) shows that half of the female participants were initially misdiagnosed. Instead of autism, they were diagnosed with mood disorders, anxiety disorders and personality disorders. Put simply: women with ASD are better able to adapt to socially desirable behaviour and therefore appear to be better able to camouflage ‘deviant’ behavioural characteristics.

Menstruation & autism

That the diagnosis is wrong or late, of course doesn’t mean that girls and women experience fewer problems than men. They also experience other problems. For example, girls more often have so-called internalising problems (feelings of anxiety and gloom) and find it more difficult to indicate their (sexual) boundaries.

In fact, girls and women may experience more problems. Because of their role in society and because they have a uterus. The fact that you get your period (for the first time), can become pregnant and go into menopause – all associated with major changes in the hormone system and thus with many unwelcome stimuli – also creates extra challenges if you don’t have ASD.

More often PMS and PMDD…

Not much research has been done into the relationship between menstruation and autism. From the available literature, it appears that symptoms of PMS and PMDD (the extreme sister of PMS) are more common in autistic girls and women. They also seem to suffer from irregular menstruation more often. The assumption is that this has to do with an increased testosterone level – something that’s measured in a number of girls and women with ASD. In addition, typical autistic behaviors – such as repetitive movements and obsessive or even aggressive behaviour – seem to worsen during the premenstrual phase.

The studies are too small to draw far-reaching conclusions, but autism appears to be a risk factor for PMS and PMDD. To regulate the peaks and troughs, hormonal contraception (for example, the contraceptive pill) is often prescribed. In the case of PMS and/or PMDD, selecting the right contraceptive pill is extra important. That’s because precisely the pills that are often used prescribed for general menstrual problems usually work less well – if not counterproductive – for mood-related cycle problems.

Tips for parents/educators:

• Start on time with menstrual education.
• Don’t give too much information at once.
• Be clear and specific.
• Fit in with the person’s perception and development level.
• Use visual aids, such as images of a uterus and menstrual products.
• Try to avoid ambiguous language such as euphemisms.
• Never assume prior knowledge. Always check whether the information is really understood.

Also read:

The Autism-Friendly Guide to Periods, by ‘expert by experience’ Robyn Steward. The British trainer and author has published several practical books on living with autism. She is also co-host of BBC Sound’s radio program ‘1800 seconds on Autism’. Suitable for kids of 9 years and older. Richly illustrated. For sale at Bol.com for around 11 euros.

Put in the diary: World Autism Awareness Day

April is World Autism Month. With April 2 being World Autism Awareness Day and from 27 March to 2 April, in the UK, it’s World Autism Acceptance Week. The theme for 2023 is colour, with colour-themed virtual fundraising challenges throughout the week. Throughout the month, there’s a focus on sharing stories and providing opportunities to increase understanding and acceptance of people with autism, fostering worldwide support.

Art project: 100 women with autism

Dutch photographer Miranda Stevens (photo) has started a photo project about autism in women, in collaboration with Female Autism Network of the Netherlands (FANN). About 70 portraits and personal stories can already be found on her website: mirandastevens.nl/fann-fotoproject/.

Also interesting:
Menstruation in literature
Menstruation in advertisements
It’s not my period, it’s PMS
Menstruation in quotes
Menstruation in films

Period! is an independent, online magazine about all aspects of menstruation. Period! is not intended as a substitute for medical advice. If you’re suffering from medical complaints, always visit your doctor or GP. Editorial articles can contain affiliate links. Sponsored collaborations can be found in the category Spotlight. Do you have any questions? Check our Contact page.

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