A new, free, online support package aims to empower parents of young autistic children to look after their dental health – and reduce levels of tooth decay and surgery.
It follows a study led by the University of Leeds, which highlights the oral health challenges faced by autistic children. The research team has collaborated with autistic youngsters, their families, and early-years professionals to co-design the support package, following parents’ calls for autism-specific advice on how to improve oral health habits. The toothPASTE website provides parents with practical, tailored solutions focusing on: toothbrushing, going to the dentist, and eating and drinking. It features videos, downloadable resources, and a forum where parents can share their experiences and advice.
Challenges faced by parents with autistic children
One in four autistic children have tooth decay by the age of five – similar to the wider childhood population – but they are less likely to visit the dentist and twice as likely to need dental treatment under general anaesthetic.
Poor oral health in childhood has lifelong impacts. Establishing optimal oral health habits – brushing twice a day with fluoride toothpaste, limiting sugary foods and drinks, and going to the dentist – are critical. However, for families of autistic children, building and keeping these habits can be more difficult. This is due to additional challenges such as communication difficulties, sensory sensitivities, and restricted or repetitive behaviours.
For example, sensory differences can make toothbrushing painful or repulsive. Dental visits can also be overwhelming, with bright lights, unfamiliar smells, strange tastes, and unexpected sounds or touch. Some autistic people experience social communication differences, making it hard for them to express if they are in dental pain. In addition, repetitive behaviours or strong preferences may lead to limited diets, often high in sugar, which can increase the risk of tooth decay.
The impact of decay is far-reaching, affecting self-esteem, speech, eating, sleeping, and quality of life. But it can also affect a child’s school attendance, impacting negatively on life outcomes.
Peter Day, Professor of Children's Oral Health and Consultant in Paediatric Dentistry at Leeds, said: “Tooth decay is a major health problem, but it is preventable. Establishing optimal habits in early life provides the foundations for long term oral health and reduces the impact of tooth decay on autistic children, their families, the NHS and wider society.”
He added: “In the long term, we hope to see a reduction in the number of autistic children that need dental care in hospital, and we hope our findings will help early-years professionals and dental teams support parents with their autistic child’s oral health needs.”
Anne-Marie Kilgallon, of Mirfield, West Yorkshire, has two autistic sons, both of whom had multiple teeth extracted under general anaesthetic when they were still in primary school.
She said: “To be told your children need teeth removing at the ages of eight and 10 is incredibly hard.
“Had this kind of support been around back then, I truly believe Tolan and Fredi wouldn't have had to go through that. We are just one example – there are so many families facing the same challenges.
“If we’d had access to the right education and support around oral health, tailored to their additional needs, I honestly believe we could have avoided such a traumatic experience for both of our boys.”
Designed with parents, for parents
Dr Amrit Chauhan, Lecturer in Qualitative Methodology and Autism-related Oral Health Research within the School of Dentistry and a Chartered Psychologist at Leeds, who co-led the research, said: “We want to help parents feel more confident in caring for their young autistic children’s teeth. That’s why families of autistic children have been involved from the start of the study, and we have very much been led by them on what they want.”
“We know that most parents already have a good idea of what they should be doing, like brushing twice a day with fluoride toothpaste – it’s more about finding practical ways to get there.
“Every family is at a different point in their journey, and every child’s needs are unique. So, on the website, we break things down into small, manageable steps. We take a gentle, gradual approach, recognising that for some children, making even one small change might take weeks or even months – and that’s okay.”
The Leeds team collaborated with researchers from the University of Manchester and University of Sheffield on the project, which was funded by the National Institute for Health and Care Research (NIHR) and West Yorkshire NHS Integrated Care Board. It is hoped the project will help reduce health inequalities.
Much-needed support
Nikki Pickles, family support manager for AWARE (Airedale and Wharfedale Autism Resource), whose son is autistic, led the project’s Patient and Public Involvement group. She said: “We work with hundreds of families every year and challenges with toothbrushing and oral health are extremely widespread. Parents frequently share their daily struggles and concerns with us.
“It can feel like a very lonely battle. They’re desperate for support, so we think this will be an amazing asset. There is no other resource like this.
“It is easy to navigate and provides useful strategies, plus advice based on the most up-to date oral health research, all specifically tailored for our cohort of families. We are really excited and super proud to be part of the project.”
Underpinned by inclusive research
The toothPASTE website was created following in-depth research featuring interviews with minimally-verbal autistic children. They used Talking Mats - visual communication aids - to describe their sensory difficulties, with one child describing toothpaste as an “explosion in the mouth”.
The study also involved interviews with families and early-years professionals to explore both the barriers to, and the factors that support, the development of optimal oral health habits. Co-design workshops followed, with parents, early-years professionals and national stakeholders.
Dr Shannu Bhatia, President, British Society of Paediatric Dentistry (BSPD), said: “BSPD welcomes the toothPASTE website with tools to help parents and carers of autistic children and young people navigate a journey of good oral health.
“The research that has gone into the toothPASTE website has enabled the development of a set of well-targeted tools to support neurodivergent young people and will really help their parents and carers.
“We know that supporting neurodivergent children and those with additional sensory requirements can present specific challenges, so guidance to help all children achieve healthy teeth and gums, is something BSPD is keen to support.”
The website is accessible to all, which means it can be used by those without a formal autism diagnosis, and it will be continuously refined to ensure its effectiveness. The team will continue working with families, dental professionals, the National Autistic Society, Autistica and Government bodies to share their findings and undertake further research to maximise the site’s effectiveness.
CASE STUDY, WITH PICS
Anne-Marie Kilgallon’s two autistic sons were just eight and 10 and when they had to have multiple teeth extracted under general anaesthetic.
Had the toothPASTE support package been around when they were little, she believes it could have prevented their pain and resulting surgery.
The 46-year-old, who co-founded The Whole Autism Family support group with husband Martin in 2015, said: “I wish we’d had that resource when the boys were tiny: it would have made such a huge difference to our lives.”
She added: “To be told your children need teeth removing at the ages of eight and 10 is incredibly hard.
“Had this kind of support been around back then, I truly believe Tolan and Fredi wouldn't have had to go through that. We are just one example – there are so many families facing the same challenges.
“I know lots of children that have had teeth extracted, and not just one tooth: Tolan had five, Fredi had seven. I know another child that had eight.
“But that's the end result. Had we been educated on how to deal with their specific issues around oral health and had this resource, I honestly believe that we wouldn't have had to put our children through these traumatic surgeries.”
Life-changing for families
Anne-Marie, of Mirfield, West Yorkshire, says the website will be life-changing for the hundreds of families she works with, whose children’s dental health is a major problem.
She said: “Tooth brushing is probably in the top 10 concerns for parents we support. It’s a battle and one they have to deal with every single day. I’ve had mums in floods of tears, not knowing what to do.
“As parents, we're all trying to do our very best, but I think I think lots of professionals that work with children like Fredi and Tolan could do with more support or more understanding of some of the battles that we face.”
Tolan, now 15, is non-speaking and Fredi, now 13, uses echolalia - repeating others’ speech - to communicate, although he doesn’t always fully understand the words he is saying. Both boys have learning disabilities and attend a SEN school in Leeds.
When they were younger, the family used a picture system to help with learning and to communicate. They helped the children understand aspects of daily life such as taking off their coats, or how to use cutlery. Both boys had extreme oral sensitives, which resulted in a restricted diet, using food as a reward and an extreme dislike of toothbrushing.
They were eventually referred to a dentist who specialised in SEND (special educational needs and disability), who suggested strategies such as changing toothbrushes; oral sensitivity exercises, non-flavoured toothpaste, distractions and brushing at different times of the day.
Instant, accessible support
Anne-Marie said: “These are all covered on the website, which looks amazing. What that does is it gives everyone immediate access to expert advice and peer support, rather than having to wait for a referral or just suffering in silence.
“I love the videos on there. I found them really useful, and I think lots of the families that I support would find them extremely beneficial too. I think there should really be a pack, when you get a diagnosis for a child, and for that to have a sign pointing to the website would be absolutely amazing.”
