supporting girls with autism and girls with Down syndrome through puberty

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When Ciara Heneghan, a primary school special education teacher, asked parents of girls with Down syndrome aged 9 to 13 if they had talked to 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 per cent said no.

“I would like to know why. What keeps parents from talking about basic biological processes,” asks Heneghan, who thinks this is partly due to the speech and language difficulties some children have – parents think their daughters might not to understand. But she believes there is more to it. She sees a “gaping hole” in educating girls with intellectual disabilities about the onset of menstruation. “Lack of support, information and resources emerged as a major theme.”

Davida Hartman, clinical director and senior psychologist at the Dublin Children’s Clinic and assistant professor in UCD’s School of Psychology, says some of the challenges are wider societal. “We don’t talk about these things enough at home or at school.”

The onset of puberty for their child may surprise parents, she says. “So much support for autism and developmental disability is around school, homework, friends at school. It’s very learning-focused and language-focused. People forget about puberty,” says Hartman, who think we should strike a balance between preparing parents without giving them more worries.

The RSE program (Relational and Sexual Education) provided in ordinary primary schools is not suitable for mentally handicapped children. Hartman says that’s just not enough for children with additional needs or for children with autism, a group who are often good visual learners.

“The generic program does not work. These children need information given in a way that is meaningful to them, with pictures and reduced language. Most of the time it has to be individualized based on the communication profile of the particular girl – how she takes in the information. »

Start the conversation early

Fiona Ferris

Fiona Ferris, deputy chief executive of national autism charity AsIAm and mum to Katelynn, 12, says as adults we can forget about periods and all the routines around them need to be explicitly taught. She recommends that conversations to prepare the girl start early, well before her expected first period.

“It is increasingly common for girls with autism and those with intellectual disabilities to experience precocious puberty. For the majority [neuro-typical] folks, that would be 11 to 13. Research shows girls with autism can be as young as nine or ten.

Ferris recommends normalizing these preparatory conversations starting around age seven. “Girls should be encouraged to practice removing their own underwear and pants, as well as putting on a towel, taking it off and throwing it away.”

While you can teach a young girl how to use a sanitary napkin, or that her period will occur once a month for much of her life, Ferris says you can’t easily teach her how she’s going to feel. “People with autism benefit from visual preparation and visual support. Most of the visual explanations available are cartoon in nature and not realistic representations of what the girl is about to see. The sight of blood can be very triggering for someone with autism or an intellectual disability.

While preparing his own daughter, Ferris found Robyn Steward’s book, The autism-friendly guide to periods, priceless. “It contains real photos of what it will look like from the girl’s point of view, for example, the different colors of blood that can occur during your period. This explains why you have your period – the ‘why’ is very important for people with autism.It explains pain relief and the different types of hygiene products 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, the trip was seamless. Katelynn has a very open attitude and is happy to talk about menstruation.

Explaining, however, that people with autism may have differences in interoception – the brain’s ability to pick up bodily sensations – Ferris says: “A girl on her period may not feel the sensation of needing to change her towel or if she fled I have to remind Katelynn to check and change because she doesn’t have those feelings of change.

Parents of autistic girls told Ferris that their child couldn’t stand periods. “They say she is very upset because of the sensory side or the hormonal side. But either way, parents find that the more prepared they are, the better.

Underestimate the experience

Davida Hartmann
Davida Hartmann

With many new routines accompanying the onset of menstruation, Ferris says adults may underestimate the experience — and its novelty — for girls with autism and those with developmental disabilities. “The new experience and the new routines are imposed on them without choice. They have no control over it. People with autism often feel like they have no control over things in their lives, and not having control over something in their body can be very distressing.

Hartman says the change can be anxiety-provoking for girls with autism. “It’s even more overwhelming because it’s happening in their body. People think menstruation is just about bleeding and changing pads – but there’s the whole sensory and hormonal aspect, period pain, bloating. Even knowing when to change the tampon and where to put it can take a long time to learn.

Hartman also notices — especially among autistic children — that many 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 safeguard around hygiene routines when a vulnerable young person starts menstruating. “For non-verbal people or people with physical or intellectual disabilities who need help with intimate personal care – going to the toilet, taking a shower – when menstruation comes, they need to be taught who to ask for help in safe and where it is safe and appropriate to change.She says this education needs to be supported visually, with pictures of safe people and places.

Hartman has seen many best practices in parents and schools, where children are well prepared for the onset of menstruation. She recommends creating an individualized social story for the girl that focuses on her body and where she can go to her school for help/change. “It’s really important that we use simple language with girls who have developmental disabilities and with girls with autism. We often use euphemisms when we talk about periods – for example, ‘flow’ – but girls with autism use the language very literally,” says Hartman, who recommends the girl’s mother – if she’s still menstruating – to 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 a more open discussion about the onset of menstruation. “With young children of eight or nine in the room, we would be quite open and ask the parent if their daughter has started her period. Parents will often say “no, but she knows everything – what’s going to happen”.

Parents play a key role in preparing their daughter and “very good visual learning” helps understanding. “Some parents worry about how their daughter will cope and care for her each month. We find that with training, the vast majority of young women with Down syndrome do fairly well. fine,” says McGrane.

  • The autism-friendly rules guide, Robyn Steward, €18.19
  • The Growth Guide for Girls, What Girls with Autism Need to Know, Davida Hartman, $15.39.
  • Visit: exa.mn/Down-syndrome-puberty

Every child has the right to a social, personal and health education

Elementary school teacher Ciara Heneghan is undertaking research for a master’s degree in special education and her early surveys show a lack of research on Down syndrome and sex education for children under 13.

She also found that the current CSR curriculum delivered in upper primary grades may not be addressing the issues sufficiently. “Parents and teachers are generally uncertain and fearful about how to approach sex education for children with Down syndrome.”

When Heneghan sees behaviors emerging at school that are unusual for a child and could indicate the onset of puberty, she approaches the child’s parents to offer support. “I ask if they would like me to cover the biological aspect with the child. The parents are delighted. They will say they have done a little but they don’t really know what they are doing.

Parents have told her about the supports they would like to provide sex education to their child with Down syndrome. “They want visual aids and resources. They would like the RSE program to be adapted to children with Down syndrome. They want training for parents – even online training.

Talking about children with Down syndrome and sexuality is the latest taboo, says Heneghan, who points out that under Irish education law, every child has the right to social, personal and health education – relationships and education sex fall under this jurisdiction.

  • Down Syndrome Ireland’s personal development program includes a module on wellbeing and healthy relationships. It is offered to young people at the end of their schooling and to adults with Down syndrome. The organisation’s CEO, Barry Sheridan, says: “We are also currently piloting the delivery of the program for younger age groups in a small number of secondary schools, with the hope of expanding the program to coming.
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