Period of change: supporting autistic girls and girls with Down syndrome through puberty
Fiona Ferris says, as adults, we can forget menstruation and all the routines around it need to be explicitly taught - in ways that suit everyone
When special education primary teacher, Ciara Heneghan, asked parents of nine to 13-year-old girls with Down syndrome if they’d spoken with their daughters about periods, 50% had not.
And when the Roscommon-based teacher asked the 20 parents if their child knew what body changes to expect as they entered puberty, 70% said no.
“I’d like to know why. What is stopping parents from talking about basic biological processes,” asks Heneghan, who thinks it is partly down to some children’s speech and language difficulties — parents believe their girls mightn’t understand. But she believes there’s more to it. She sees a “gaping hole” in educating girls with intellectual disability about menstruation onset: “Lack of support, information and resources came up as a major theme.”
Davida Hartman, clinical director and principal psychologist at Dublin-based Children’s Clinic and adjunct professor in UCD’s School of Psychology, says some of the challenges are broader societal ones. “We don’t talk about these things enough at home or at school.”
Onset of puberty for their child can catch parents unawares, she says. “So much autism and intellectual disability support is about school, homework, friends at school. It’s very focused on learning and language. People forget about puberty,” says Hartman, who believes we should strive for a balance between preparing parents without giving them extra worry.
The RSE (Relationships and Sexuality Education) programme delivered in mainstream primary schools isn’t adapted for children with intellectual disability. Hartman says it simply isn’t sufficient for children with additional needs or for autistic children, a group who are often strong visual learners.
“The generic programme doesn’t work. These children need information given in a way meaningful for them, with photos and reduced language. Most of the time it needs to be individualised to the particular girl’s communication profile — how she takes in information.”
Fiona Ferris, deputy CEO of national autism charity AsIAm and mum to 12-year-old Katelynn, says, as adults, we can forget menstruation and all the routines around it need to be explicitly taught. She recommends that conversations to prepare the girl start early, long before her first period is expected to arrive.
“It’s becoming increasingly common for girls on the autistic spectrum and those with intellectual disability to experience precocious puberty. For most [neuro-typical] people it would be 11 to 13. Research is showing autistic girls can be as early as nine or 10.”
Ferris recommends normalising these preparatory conversations from around age seven. “Girls should be encouraged to practice pulling up their own underwear and trousers, as well as putting on a pad, taking it off and disposing of it.”
While you can teach a young girl how to use a sanitary pad, or that menstruation will arise once a month for quite a lot of her life, Ferris says you can’t easily teach her how it’s going to feel. “Autistic individuals benefit from visual preparation and visual support. Many of the visual explanations available are of an animated cartoon nature and are not realistic representations of what the girl is going to see. The sight of blood can be quite triggering for someone on the autistic spectrum or who has an intellectual disability.”
When preparing her own daughter, Ferris found Robyn Steward’s book, , invaluable. “It has real photos of exactly what it’s going to look like from the girl’s perspective, for example, the different colours of blood that might happen through the menstrual period. It explains why you get a period — the ‘why’ is very important to autistic people. It explains pain relief and the various types of hygiene product and how to use them.”
Because Ferris had so many conversations with Katelynn about menstruation, her daughter was “over the moon when it happened”. In many ways, it has been a smooth journey. Katelynn has a very open attitude and is happy to talk about menstruation.
Explaining however that autistic people can have differences in interoception — the brain’s ability to pick up on bodily sensations — Ferris says: “A girl on her period may not pick up on the sensation of needing to change her pad or if it has leaked. I need to remind Katelynn to check and to change because she doesn’t get those change sensations.”
Parents of autistic girls have confided to Ferris that their child can’t cope with menstruation. “They say she gets very upset because of the sensory side or the hormonal aspect of it. But right across the board parents find the more preparation the better.”
With many new routines accompanying menstruation onset, Ferris says adults can underestimate the experience — and the newness of it — for autistic girls and those with intellectual disability. “The new experience and routines are thrust on them without a choice. They’ve no control over it. Autistic people often feel they don’t have control over things in their life, and to not have control over something in your body can be very distressing.”
Hartman says change can be anxiety-provoking for autistic girls. “It’s even more overwhelming because it’s happening within their body. People think menstruation is just about bleeding and changing pads – but there’s the whole sensory and hormonal aspect, the period pain, bloating. Even knowing when to change the pad and where to put it can take a long time to learn.”
Hartman also notices — particularly among autistic children — that a lot don’t want to grow up. “I hear it a lot — girls saying ‘I want to stay the same as I was’.”
Ferris points to an important safeguarding element around hygiene routines when a vulnerable young person starts menstruation. “For non-verbal individuals or someone with physical or intellectual disability who needs help with intimate personal care — going to the bathroom, showering — when menstruation occurs, they need to be taught who it is safe to ask for help from, and where it is safe and appropriate to change.” She says this education needs to be visually supported, with photos of safe people and places.
Hartman has seen many exemplary practices among parents and in schools, where children are well prepared for menstrual onset. She recommends creating an individualised social story for the girl that centres around her body and where she can go in her school to ask for help/to change. “It’s really important we use plain language with girls who have intellectual disability and with autistic girls. We often use euphemisms when we talk about periods — for example, the ‘flow’ — yet autistic girls use language very literally,” says Hartman, who recommends the girl’s mother — if still having periods — show her daughter what menstrual blood looks like.
Fiona McGrane, clinical nurse specialist for children with Down syndrome at CHI Tallaght, has been in her role since 2009 and now sees more open discussion about menstrual onset. “With young children of eight or nine in the room, we’d be quite open and ask the parent if her daughter has started her period. Parents will often say ‘no, but she knows all about it — what’s going to happen’.”
Parents play a key role in preparing their daughter and “really good visual learning” helps understanding. “Some parents worry about how their daughter will cope and look after herself every month. We find, with training, the vast majority of young women with Down syndrome manage quite well,” says McGrane.
- The Autism-Friendly Guide to Periods, Robyn Steward, €18.19
- The Growing Up Guide for Girls, What Girls on the Autism Spectrum Need to Know, Davida Hartman, €15.39.
- Visit: exa.mn/Down-syndrome-puberty
Primary school teacher, Ciara Heneghan, is undertaking research for a master's degree in special education and her initial investigations show a lack of research around Down syndrome and sexuality education for children under 13.
She has also found the current RSE programme delivered in upper primary classes may not address the issues sufficiently. “Parents and teachers are generally unsure and fearful about how to approach sexuality education for children with Down syndrome.”
When Heneghan sees behaviours emerging at school that are out-of-character for a child and that could indicate puberty-onset, she approaches the child’s parents to offer support. “I ask if they’d like me to cover the biological aspect with the child. Parents are delighted. They’ll say they’ve done a bit but they don’t really know what they’re doing.”
Parents have told her the supports they’d like around providing sexuality education for their child with Down syndrome. “They want visual supports and resources. They’d like the RSE programme adapted for children with Down syndrome. They want training for parents — even online training.”
Speaking about children with Down syndrome and sexuality is the last taboo, says Heneghan, who points out that under the Irish Education Act every child has a right to social, personal and health education — relationships and sexuality education falls within this remit.
- Down Syndrome Ireland’s personal development programme has a module on healthy wellbeing and relationships. It is offered to school-leavers and adults with Down syndrome. The organisation’s CEO, Barry Sheridan, says: “We’re also currently piloting delivering the programme for younger age groups in a small number of secondary schools, with the hope of expanding the programme in the future.”
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