Project RAKSHA is a 2nd IndiaBioscience Outreach Grant awardee. This dream project of passionate speech-language pathologists created an e‑resource booklet providing culturally sensitive, illustration-based stories to guide parents and caregivers in communicating about reproductive and sexual health and safety to children with autism spectrum disorder (ASD). Read this article to know behind the scene of this IOG project.
“It’s important to talk to children about sex and safety,” said the presenter.
I let out a sigh and muttered, “But how?”
Recently, my colleague Mansi and I attended a workshop that emphasised the importance of discussing sex and safety with children. However, we left feeling frustrated because no one addressed the critical question of how to start this conversation. As speech-language pathologists working with children with disabilities, who are at higher risk of sexual abuse, we wanted to include this topic in our lesson plans. Still, we didn’t know where to begin or what to cover.
The available resources were lacklustre and failed to explain the subject matter adequately, had poor illustrations, lacked basic concepts needed to comprehend the materials, or required purchasing. I remember turning to Mansi and saying, “We’re back where we started.” We needed resources that were direct, simple, and easy to understand.
It all started when Hema, a determined undergraduate student, walked into our mentor’s office with a burning desire to apply for the second IndiaBioscience Outreach Grant. And from that moment, our team was born, with Reuben leading the charge and myself as co-lead, along with Mansi, Hema, and Ridha. As we brainstormed ideas, I pitched my passion project to create sexual health materials for children with disabilities, and the team loved it. So if the grant came through, we were going to be incentivised to do something we always wanted to. And after a few weeks of nerve-wracking wait, we learned that we had been selected as one of the top five finalists out of over sixty applicants. We were ecstatic to receive the grant and excited to make our mark on the world.
CATCH-22: The grant was ‘outreach.’ We wanted to be different from the workshops we attended. We wanted to outreach. But with what?
Navigating the first steps
With Project RAKSHA, we wanted to teach children, especially those with disabilities, about sexual health and safety. This would directly impact children’s sexual health understanding and promote positive safety attitudes.
“So here we were, a group of enthusiastic speech-language pathologists wanting to address an important gap in outreach on reproductive and sexual health. But with inclusivity in approach and audience.”
Our goal was to create and distribute culturally sensitive illustration-based stories in English and Hindi. It would be an e‑resource booklet that guides parents and caregivers in communicating about reproductive and sexual health and safety to children with autism spectrum disorder (ASD).
We researched, wrote, edited, translated and illustrated the stories with painstaking care, keeping in mind the rich tapestry of values that make up the Indian context. We decided to spend the first month finalising an outline for each domain of the scientific illustration-based resource. The following 3 months were dedicated to story writing and designing illustrations. The next 4 months were spent on content validation, rating, and final revisions. And the last 4 months were dedicated to final copy circulation, beneficiary feedback, and final report writing.
The team understood the importance of having a motivated artist, especially for successfully completing the project’s initial phase. However, we faced some setbacks due to the hired artist’s unavailability. So, we brought in a speech-language pathologist as an artist, which helped things go more smoothly.
The final outcome
We developed culturally sensitive materials tailored for vulnerable populations, specifically children with autism spectrum disorders. Our audience included children and adolescents aged 6 years and older, parents, educators, and developmental interventionists.
To ensure accuracy, our materials were reviewed by a Developmental Paediatrician, a Special Educator, and a Speech Language Pathologist. The stories we created were not intended for independent reading by children, but instead for parents, caregivers, and professionals in the (re)habilitation field.
The illustrations are simple and direct, so you can adjust the language to suit your child’s abilities. We recommend working with a Speech-Language Pathologist to incorporate augmentative and alternative communication strategies if needed.
Our stories were designed to spark discussion and questions among adults, so they can feel prepared and comfortable with the key concepts addressed. Each story comes with general instructions that we strongly recommend following to facilitate healthy and accurate learning.
Themes 1 – 7 are appropriate for children aged 4 and above, while themes 8 – 10 are better suited for children over 9 – 11 years old. When first introducing the stories, it’s important to follow the order of themes, but when revisiting concepts later on, it’s okay to skip ahead to the relevant theme.
Our first trial run
Before giving the resource to the country, we decided to test it ourselves to ensure it was effective. In our pilot study, we trained 54 caregivers from diverse backgrounds, including dads, moms, grandmas, conservatives, liberals, and people from various socio-economic levels, religions, and communities, for about 10 days. To our delight, there was no resistance, and everyone accepted the need for sexual health and safety education for their children. We even gave them the option to provide written feedback privately and anonymously, and not a single person opposed the idea!
Unintended but happy outcome – we crafted our stories with the intention of being inclusive and welcoming to the neurodivergent population. But, the best part is that these stories can be enjoyed by all children, regardless of their unique abilities or challenges.
Looking back, developing the story series may not have been a typical “outreach” effort for the most part. Still, the team poured their hearts and souls into the project for months, resulting in a successful pilot program that educated 54 parent-child pairs. They dedicated themselves to creating materials that could make a real difference, and their passion and commitment shine through in the final product.
We’re thrilled to announce that our stories are now available for use, and the best part is, they’re completely FREE! This resource is a must-have for all parents and rehabilitation professionals, and we’re happy to offer it in both English and Hindi.
“We promised, and we delivered. But our outreach efforts are just beginning!”
If you have any questions or feedback, please reach out to us at firstname.lastname@example.org. We’re also interested in collaborating with individuals and organisations to raise funds and further our plans. Let’s work together to make a difference!