A new free online support programme, ToothPASTE, is now available to help parents of children with autism manage their children’s oral health more effectively, reducing the risk of tooth decay and dental procedures requiring general anaesthetic.
The project, led by the University of Leeds, stems from a study focusing on the oral health challenges of children with autism. The research team worked closely with families with autism and early childhood education professionals to develop a toolkit tailored for parents, responding to urgent calls for help in developing good oral hygiene habits in children with autism.
The ToothPASTE website provides parents with personalised solutions focusing on three key areas: brushing, dental visits and diet management. The website includes instructional videos, downloadable practical resources and a community forum for parents to share their experiences.
Oral health challenges for children with autism
Research shows that around a quarter of children with autism will have tooth decay by the age of five, a rate similar to that of normal children. However, these children have fewer dental visits and are twice as likely to receive dental treatment under general anaesthetic as other children.
The reasons for this are complex. Children with autism may face problems such as sensory sensitivity, communication difficulties and repetitive behaviors, which may hinder them from establishing and maintaining good oral hygiene habits.
For example, brushing teeth may cause strong discomfort due to the touch of the toothbrush or the taste of toothpaste; visiting the dentist may become extremely anxious due to sensory stimulation such as light, smell and sound.
In addition, some children with autism have a diet affected by preferences and behavioral restrictions, and consume more sugary foods, which further increases the risk of tooth decay. The difficulty in expressing toothache also makes it difficult for parents and doctors to detect problems in time.
Peter Day, professor of children’s oral health at the University of Leeds, pointed out: “Although tooth decay is common, it is completely preventable. We hope that through this project, we can lay the foundation for children’s future health and reduce the burden on families and the NHS.”
Parents’ personal experience and voice
Anne-Marie Kilgallon from Mirfield, West Yorkshire, is the mother of two autistic boys. She recalled that both children had multiple teeth extracted under general anesthesia due to severe tooth decay during primary school.
“It’s heartbreaking to be told that an eight- or ten-year-old needs a tooth extracted. If there had been support like ToothPASTE, our child would probably not have gone through this pain,” she said.
She said many families are facing the same challenges and this project will make a real difference for them.
Designed for parents, by parents
Dr Amrit Chauhan, lecturer at the University of Leeds and head of autism-related oral health research, emphasized: “We have worked with parents to develop this platform from the beginning, and it is truly from parents and for parents.”
The website breaks down complex care tasks into small steps and adopts a gentle and gradual approach to adapt to the different needs of each child and the rhythm of the family.
In addition, the project team also collaborated with the University of Manchester and the University of Sheffield, and received funding from the National Institute for Health and Care Research (NIHR) and the West Yorkshire NHS Integrated Care Board, with the goal of narrowing health gaps.
Affirmation from frontline supporters
Nikki Pickles, Family Support Manager at AWARE, is one of the leaders of the patient engagement group for this project. She said that dental care is one of the most frequently consulted issues by parents.
“Brushing teeth is a daily battle for many families. We are delighted to see the emergence of ToothPASTE, which is not only based on the latest research, but also truly responds to our needs.”
Dr. Shannu Bhatia, President of the British Society for Paediatric Dentistry (BSPD), also said: “This platform provides practical tools for neurodiverse children and really helps parents and caregivers improve their children’s dental health.”
The platform is designed to be both inclusive and practical
The development of ToothPASTE is based on inclusive research. The research team used the visual communication tool “Talking Mats” to communicate with children with limited language skills and understand their real experience of toothpaste taste, touch, etc. For example, one child described toothpaste as “an explosion in the mouth.”
In addition, the team also worked with parents and early childhood professionals to explore effective strategies to promote children’s oral habits, and developed training modules and support materials based on this.
The platform is open to all families, and no formal autism diagnosis is required to use its resources. The website will be continuously updated, and further research will be conducted in the future to optimize the content and expand cooperation with the National Autism Society, Autistica and government agencies.
Change is happening
“I have seen countless mothers cry because their children refused to brush their teeth.” Anne Marie said, “This platform puts expert advice and other parents’ experiences at your fingertips, without having to wait a long time or fight alone.”
She hopes that every child who receives a diagnosis in the future will be informed of the existence of ToothPASTE. She said: “This can really change the lives of an entire family.”