European Archives of Paediatric Dentistry

https://doi.org/10.1007/s40368-020-00586-y

ORIGINAL SCIENTIFIC ARTICLE

Parents’ satisfaction on dental care of Dutch children with Autism

Spectrum Disorder
L. S. Kind1,3 · I. H. A. Aartman2 · M. C. M. van Gemert‑Schriks1,3 · C. C. Bonifacio1,3

Received: 5 May 2020 / Accepted: 10 November 2020

© The Author(s) 2020

Abstract
Purpose To assess if Dutch children with Autism Spectrum Disorder (ASD) regularly visit a dentist and to evaluate parent’s
satisfaction on the care provided.
Methods Parents of ASD children (2–18 years) were invited to fill out a survey. The survey consisted of questions regard-
ing ASD severity, frequency of dental visits, history of dental pain, type of dental practice and parents’ satisfaction. Results
were analysed using Chi square and Mann–Whitney U tests (α = 5%).
Results Of the 246 returned questionnaires, 19 were excluded (incomplete or unconfirmed ASD diagnosis). All children
visited a dentist at least once and 5% of them had their last visit more than 12 months ago. According to parents, 15% of the
children did not receive the needed care when they had toothache and 21% of the parents were unsatisfied with the current
dental care provided. No difference was found between satisfied and unsatisfied parents in type of dental practice visited
(p > 0.05). The children of unsatisfied parents reported more often pain during the last year (p = 0.013) and had a more severe
type of ASD (p = 0.016).
Conclusions The majority of Dutch ASD children investigated regularly visit a dentist and 21% of the parents is unsatisfied
with the dental care provided.

Keywords Dental care · Dentistry · Autism · Special needs

Introduction et al. 2006). There is a substantial dispersion within the

ASD people regarding skills, intelligence and treatability.
There is an absence of research on the prevalence of Autism However, there are also communalities: people with ASD
Spectrum Disorder (ASD) for the Dutch population. Inter- often have difficulties with social interaction and com-
national research estimates the prevalence around 1% of the munication, and exhibit typical patterns of behaviour and
world population and the Dutch National Health Council interests. Intellectual disability occurs in 60% of the ASD
assumes that the prevalence in the Netherlands to be the patients (Friedlander et al. 2003). An equal percentage has
same. Following this assumption; there are approximately behavioural problems such as temper tantrums, hyperactiv-
160.000 people in the Netherlands with ASD (Williams ity, short attention span, anger and aggressiveness, or other
co- morbid disorders such as epilepsy and gastrointestinal
problems (Friedlander et al. 2003). People with ASD have
* C. C. Bonifacio difficulty coping with stress and often have anxiety disorders
[email protected] (Blomqvist et al. 2014). Also, unusual responses to sensory
1
Department of Cariology, Endodontics and Pedodontology, stimuli are very characteristic for the disorder, i.e., 70–90%
Academic Centre for Dentistry Amsterdam (ACTA), Gustav of ASD patients is hypo- or hyper-sensitive to touch, smell,
Mahlerlaan 3004, 1081 LA Amsterdam, The Netherlands sound, taste or light (Stein et al. 2013).
2
Department of Social Dentistry and Behavioural Sciences, ASD is not associated to specific intraoral characteris-
Academic Centre for Dentistry Amsterdam (ACTA), tics, but patients do have features that are related to oral
Amsterdam, The Netherlands health. Many patients have difficulties swallowing food,
3
Department of Pediatric Dentistry, Academic Centre which results in a longer presence of the food in the oral
for Dentistry Amsterdam (ACTA), Amsterdam, cavity (Önol and Kirzioglu 2018). In addition, there is often
The Netherlands

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 European Archives of Paediatric Dentistry

a preference for sweet or sticky foods. Cariogenic foods are systems are differently organised. For example, costs of den-
often used as a reward for reinforcement of good behav- tal care or insurance have been cited as core barriers to den-
ior. All these factors increase the risk for dental caries in tal care in USA and China. This does not count for the Dutch
the ASD population (Loo et al. 2008). The rates of caries situation, due to the provision of free dental care for children
prevalence in ASD patients vary in the literature (Da Silva up to 18 years. Furthermore, in the Netherlands, ASD chil-
et al. 2017). Only a few studies are available about the caries dren have the opportunity to go to different types of dental
prevalence in ASD children and they generally have small practices, i.e., the general dental practice, the pediatric refer-
samples. Some authors mention that the prevalence of caries ral dentist or the special dental care centre, often situated in
in ASD children is lower than in healthy developing peers a hospital setting. To be eligible for treatment in a pediatric
(Loo et al. 2008; Fakroon et al. 2015), others report a similar referral clinic or special dental care centre, children need to
or higher caries prevalence in children with ASD (El Khatib be referred by, for example, a general dental practitioner,
et al. 2014; Delli et al. 2013). Nevertheless, consensus does general practitioner or pediatrician. Although these factors
exist on the extent of treatment, stating that ASD children could implicate that oral health care for ASD children is
have untreated dental decay more often (Tchaconas and sufficiently covered in the Netherlands, no details are known
Adesman 2013; Kopycka-Kedzierawski and Auinger 2008). and consequently no objective comparison to other countries
In addition, due to inadequate oral hygiene, children with can be made to evaluate if the current system is enough for
ASD manifest gingivitis and periodontal disease more often the needs of ASD children. Therefore, the aim of this study
than those without ASD (Pilebro and Backman 2005; Fer- is to examine if Dutch children with ASD regularly visit a
razzano et al. 2020). dentist and to evaluate the satisfaction of their parents on the
It can be assumed that due to the factors mentioned above, dental care provided.
challenges in the dental setting are aggregate for both the
dental care professional and the ASD patient. This assump-
tion is supported by experience, whereas various studies Materials and methods
also report upon the uncooperative behaviour, anxieties and
negative experiences the children with ASD exhibit in the Ethical approval
dental setting (Loo et al. 2008; Barry et al. 2014; Duker et al.
2017). Due to the mutual difficulties faced by both the dental The Medical Ethical Committee of the Vrije Universiteit
caregivers and the ASD patients, dental health care is often Amsterdam declared that, according to the WMO (Dutch
lagging in children with ASD. law for medical research involving human subjects), ethical
In the USA, 15% of the children with ASD reported approval was not needed.
to have unmet dental care needs versus only 6% of USA
children overall (McKinney et al. 2014). Lai et al. reported Participants
in 2012 comparable results, 12% of the ASD children had
unmet dental needs and 7% of the ASD children had never The sample comprised of parents/caregivers of children
visited a dentist (Lai et al. 2012). Brickhouse et al. reported between 2 and 18 years with an ASD diagnosis who live in
in 2009 that 19% of USA children with ASD had unmet the Netherlands and who were willing to participate in this
dental needs and they showed that children with ASD who study. If parents had more children diagnosed with ASD,
exhibit behavioural problems are less likely to receive regu- the survey had to be filled out considering the eldest child.
lar dental care (Brickhouse et al. 2009). More recently, a
study performed in Hong Kong also found significant differ- Procedures
ences in reported barriers to access to dental services among
preschool children with and without ASD (Du et al. 2020). The invitation for filling out the survey was distributed
Their main complaints are the difficulty in finding a dentist through the websites of several ASD-communities, i.e., the
who is willing to treat the ASD child or that the child cannot Dutch Association for Autism (NvA/www.nva.nl), Autisme
be cooperative. In this sense, children with ASD may be at Paspoort (www.autis​mepas​poort​.nl) and Autism friendly
risk of receiving inappropriate dental care, due to a lack of dentistry (www.autis​mevri​endel​ijket​andhe​elkun​de.nl). All
appropriately trained general dentists. It has been reported three communities referred to the survey in their digital
that, in the USA, as low as 10% of practitioners treated chil- newsletter, and the final two also placed the invitation on
dren with special needs on a regular basis (Casamassimo their Facebook page. The digital survey could be filled out
et al. 2004). via a link to Surveymonkey. As these were all free accessible
The studies mentioned above, all focus on the dental websites with an unknown number of visitors that met the
health care situation in the USA and China but are not gen- inclusion criteria, the response rate cannot be determined.
eralizable to the Netherlands, where (dental) health care This digital survey was accessible from November 2015 to

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European Archives of Paediatric Dentistry

February 2016. During the congress of the Dutch Associa- Table 2  Dental related features of the included ASD children
tion for Autism in November 2015, in the city of Utrecht, the (N = 227)
Netherlands, parents and caregivers of children with ASD N %
were invited face to face to fill out a paper version of the
Child’s perceived dental health status
survey. The survey was filled out anonymously. There might
No teeth 1 0
be an overlap in parents visiting more than 1 available sites
Poor 6 3
(i.e., website and/or congress). Therefore, in the consent let-
Fair 72 32
ter parents were asked to fill out the survey maximum once.
Good 122 54
Excellent 26 11
Informed consent
Child’s perceived cooperation in dental office
Really poor 45 20
Before starting the survey, parents received information
Poor 35 15
about this research. By filling out the survey they gave per-
Moderate 72 32
mission for using the responses in this research.
Good 51 22
Really good 24 11
Measures
Challenges during last dental visit (multiple answers
allowed)
After conducting a literature review on the barriers to dental
Dentist didn’t treat my child well 46 20
care of patients with ASD and to examine the questions used
My child wasn’t treatable 84 37
in previous research about this subject, a new survey was
Other 11 5
designed, as there were no existing suitable surveys with
No challenges 105 46
questionnaires for this specific subject. The used survey was
Child toothache during the last 6 months
not validated as the main goal is to report parents’ satisfac-
Yes 52 23
tion and to collect demographic data regarding ASD children
No 160 70
dental visits and their parents’ satisfaction.
Don’t know 15 7
The survey consisted mostly of closed-ended questions,
Child received good dental care when in tooth pain
with space for further comment by the parents/caregiv- (N = 52)
ers. The survey included questions on basic demograph- Yes 42 81
ics and questions regarding severity of ASD, frequency of No 8 5
dental visits, history of dental pain, type of dental practice Don’t know 2 4
(Tables 1 and 2) and parents’ satisfaction related to dental Type of dental practice
care provided. Regular practice 145 64
Statistical analyses were performed with SPSS, version Pediatric dentist 54 24
23. The collected data were compared using Chi-square Special needs dental center 25 11
Other 3 1

Table 1  Basic features of the ASD children included (N = 227)

N % and Mann–Whitney U tests. Significance was deemed at
p < 0.05.
Child’s gender
Male 167 74
Female 60 26
Results
Child’s age (years)
2–6 20 9
In total, 246 surveys were returned. Of these, 19 were
7–12 116 51
excluded, because they were incomplete or the child did not
13–18 91 40
have an ASD diagnosis confirmed. From the 227 complete
Childs’ perceived severity ASD
surveys the characteristics of the children are included in
Severe 81 36
Tables 1 and 2.
Moderate 109 48
Mild 37 16
Dental visits
Other medical conditions
Yes 82 36
All children (N = 227) had previous experience with a
No 145 64
dentist. For 81% of the respondent ASD children, the last

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dental visit took place in the last 6 months. For 14% of Last dental visit more than 1 year ago
them, the last dental visit was 6–12 months ago and for
5% of the children it was between 1 and 3 years ago. Only When the child with ASD visited a special dental care center
one child had his dental visit more than 3 years ago. Den- for his/her dental care, the chance for not visiting a dentist
tal visit features for the parents of the respondent ASD more than 1 year was significantly lower (X2 = 24.82, df = 3,
children are: all of them reported to have experience with p < 0.001), in comparison to the patients from a pediatric
a dentist. Eighty-five percent of the parents had their last referral clinic or a general dental practice. Not visiting a
dental visit less than 6 months ago, 14% between 6 months dentist more than 1 year was not related to the gender of
and 1 year, 1% between 1 and 3 years and in 1% of the the child (X2 = 1.026, df = 1, p > 0.05), nor to the severity of
parents the last dental visit was more than 3 years ago. ASD (X2 = 0.719, df = 1, p > 0.05). Remarkably, all children
that had their last dental visit more than 1 year ago (n = 13),
had a parent whose last dental visit was less than 1 year ago.
Oral hygiene
Emergency dental care
Regarding the oral hygiene, 49% of the parents found it
difficult to brush their child’s teeth. Brushing frequency The parents who answered that they could not find appro-
was for 4% of the children only 0–3 times per week, 22% priate dental care when their child had a toothache, were
brushed once a day, 23% brushed 8–11 times per week, parents of children who did not visit a dentist for more
and half of the children had their teeth brushed twice a than 1 year (X2 = 12.012, df = 4, p = 0.015). Furthermore,
day. Additionally, the children with severe type of ASD not receiving the needed dental care was not related to
(N = 81) were found to be equally distributed between gender (X2 = 1.107, df = 4, p > 0.05) nor to the severity of
referral dental practices and general dental practice ASD (X2 = 1.213, df = 3, p > 0.05). These children were sig-
(p > 0.05). These children are also found to be significantly nificantly more often patients in a general dental practice
more often difficult to brush (X2 = 6.093, df = 1, p = 0.014). (X2 = 15.911, df = 6, p = 0.008) compared to the special den-
Furthermore, for children with severe type of ASD, the tal care center and pediatric referral clinic.
perceived cooperation in the dental chair is significantly
worse, compared to that of children with the moderate or
mild types of ASD (X2 = 11.176, df = 4, p = 0.025). Discussion

Dental care remains the most prevalent unmet health care for
Satisfaction on dental care children with special needs (Lewis et al. 2005). In addition,
oral health-related quality of life was poorer among children
From the answers given to the posed questions, 21% of with ASD, compared to children without ASD (Du et al.
the parents is not satisfied with the dental care their child 2020). This study investigated if Dutch children with ASD
receives. The parents who were satisfied with the dental regularly visit a dentist and if their parents were satisfied
care provided to their child, were less likely to have prob- with the dental care provided. All investigated children in
lems with brushing their child’s teeth, compared to the this study have visited a dentist at least once. Nevertheless,
dissatisfied parents (X2 = 5.993, df = 1, p = 0.014). Also, 21% of the parents report dissatisfaction with the dental care
satisfied parents rated the cooperation of their child in the currently provided and for 5% of the children the last dental
dental office higher (p = 0.001) and the perceived dental visit was more than 1 year ago, meaning that these children
health status of their child was better than the rate of dis- do not visit the dental office frequently. The finding that all
satisfied parents (p < 0.001), indicated by the Mann–Whit- children have dental experience could be explained by the
ney U test. Additionally, the parents who were not satisfied population of parents involved in the present study. They can
with the dental care their child currently receive, were be considered motivated parents, because they are involved
parents whose child more often had a toothache during in ASD specific programs or participating in conferences or
the last year (X2 = 8.650, df = 2, p = 0.013), had more often websites. This influences the external validity of the present
a severe type of ASD (X 2 = 5.809, df = 1, p = 0.016) and study.
did not visit a dentist for more than 1 year (p < 0.001). The general advise in the Netherlands is to visit the den-
The satisfaction of the parents is not related to the type tist twice a year for a dental check-up, and in case of ASD
of dental practice their child visited (p > 0.05), nor to the children this frequency can be higher with visits scheduled
gender of the child (X2 = 0.727, df = 1, p > 0.05) and is not every 3–6 months. From the results of the present study,
related to the child having a complementary diagnosis or the frequency of dental visits of the ASD children in the
not (X2 = 1.909, df = 1, p > 0.05). last 12 months was higher in the Netherlands (95%) when

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European Archives of Paediatric Dentistry

compared to USA (71–88%) and China (75%) (McKinney A possible reason for not visiting the dentist on a regular
et al. 2014; Brickhouse et al. 2009; Du et al. 2020). The dif- base could be related to the distance and accessibility of
ferences in reimbursement by the insurance system could the practice. The distance can also be a plausible explana-
account for that. While in the USA, only few medical insur- tion for most of the children visiting general dental prac-
ance plans include coverage for dental expenses, in the Neth- tice (64%) instead of pediatric dental clinics or special
erlands, dental costs are mostly covered for all children up dental care centres (35%) as these centers are frequently
to 18 years old. Therefore, prosperity cannot be a reason for not in a short distance from most of the family houses.
not visiting a dentist in the Netherlands. Another explanation could be that parents avoid bringing
As expected, the biggest problems were encountered for their ASD child to the dentist, because they anticipate on
the children with a severe type of ASD. The results of this a compromised cooperation of their child (Du et al. 2020).
study indicated that children with a severe type of ASD were With regard to the limitations of the present study, par-
more difficult to brush and also more difficult to treat, in ents rated the severity of the ASD and the cooperation of
case dental treatment is indicated. According to the parents, the child during dental visits themselves. Parental reports
the most cited problem during the child’s last dental visit is could be biased and caregiver’s assessment of behaviour
the child’s behaviour in the dental office. This finding is in may or may not represent the actual behaviour of the child.
accordance with previous studies (Du et al. 2020; Thomas Furthermore, there was no mention on parental education
et al. 2018). and special needs education, which can affect parental
General dentists may not be adequately equipped to perception. On the other hand, Marshall et al. 2008 found
handle the behaviour of this specific child population. In a that parents, in more than 88% of the cases, accurately pre-
multi-center survey in the USA, it was found that only 10% dicted whether their ASD child would permit an examina-
of the American general dentists often perform dental treat- tion in the dental chair (Marshall et al. 2008). The present
ment to children with special health care needs (Lai et al. cohort can be also considered as biased, because it is small
2012). In the present study, the children with a higher rated and parents without access to internet or the congress were
level of ASD severity were equally treated by the general not reached.
dentist relative to being treated by dentists in a special dental
care centre or paediatric dental clinic. However, children
whose cooperation is rated as low, are more often treated in
these referral practices. Although it is expected that dentists Conclusion
in a special dental care centre or paediatric dental clinic are
better able than the general dentist to handle the behaviour of In conclusion, the results of this study indicate that, despite
children with ASD, these specialists have to deal with more that all children in this research have visited a dentist at least
difficult cases than the general dentist. This calls for further once, dental care of Dutch ASD children is not optimal. Due
study upon this subject. to the vulnerability of this patient group and their specific
Further research is also required to investigate the dis- needs, it is of utmost importance to perform further research
satisfaction with the dental care received of the 21% of the upon dentists’ knowledge and skills, treatment options and
parents. It should be deepened out what aspect of the dentist effective behavioural management techniques.
or the dental treatment they are specifically dissatisfied with.
Due to the scope and type of questions contained in the sur-
vey used in the current study, the causes for dissatisfaction Author contributions All authors made substantial contribution to the
conception of the research. LSK collected and analysed the data. IHAA
could not be specified. provided expert advice relating to data collection and interpretation.
From the results of this study, it appeared that children The first draft of the manuscript was written by LSK and all authors
who had their last dental visit longer than 1 year ago, had commented, revised and approved the final article.
a parent whose last dental visit was less than 1 year ago.
It seems that having a child with ASD can be a barrier for Funding Not applicable.
frequent dental visits, even when the parent’s do visit the
Data availability If needed, the corresponding author can provide
dentist themselves. Former research reported that children details of data.
of mothers who did not visit a dentist regularly were at
greater risk of not receiving dental care (Goettems et al. Code availability Not applicable.
2012), but in our study even the children of parents who
do visit the dentist regularly could be considered at a rela- Compliance with ethical standards
tive risk of not receiving dental care. Isong et al. reported
in 2010 that children were more likely to regularly visit Conflict of interest The authors declare that they have no conflict of
a dentist when their parents also did (Isong et al. 2010). interest.

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 European Archives of Paediatric Dentistry

Ethics approval The Medical Ethical Committee of the Vrije Univer- Fakroon S, Arheiam A, Omar S. Dental caries experience and peri-
siteit Amsterdam declared that, according to the WMO (Dutch law odontal treatment needs of children with Autistic Spectrum Dis-
for medical research involving human subjects), ethical approval was order. Eur Arch Paediatr Dent. 2015;16:205–9.
not needed. Ferrazzano GF, Salerno C, Bravaccio C, Ingenito A, Sangianantoni
G, Cantile T. Autism Spectrum Disorders and oral health status:
review of the literature. Eur J Paediatr Dent. 2020;21:9–12.
Open Access This article is licensed under a Creative Commons Attri- Friedlander AH, Yagiela JA, Paterno VI, Mahler ME. The pathophysi-
bution 4.0 International License, which permits use, sharing, adapta- ology, medical management, and dental implications of autism. J
tion, distribution and reproduction in any medium or format, as long Calif Dent Assoc. 2003;31:681–91.
as you give appropriate credit to the original author(s) and the source, Goettems ML, Ardenghi TM, Demarco FF, Romano AR, Torriani DD.
provide a link to the Creative Commons licence, and indicate if changes Children’s use of dental services: influence of maternal dental
were made. The images or other third party material in this article are anxiety, attendance pattern, and perception of children’s quality of
included in the article’s Creative Commons licence, unless indicated life. Community Dent Oral Epidemiol. 2012;40:451–8.
otherwise in a credit line to the material. If material is not included in Isong IA, Zuckerman KE, Rao SR, Kuhlthau KA, Winickoff JP, Perrin
the article’s Creative Commons licence and your intended use is not JM. Association between parents’ and children’s use of oral health
permitted by statutory regulation or exceeds the permitted use, you will services. Pediatrics. 2010;125:502–8.
need to obtain permission directly from the copyright holder. To view a Kopycka-Kedzierawski DT, Auinger P. Dental needs and status of
copy of this licence, visit http://creat​iveco​mmons​.org/licen​ses/by/4.0/. autistic children: results from the National Survey of Children’s
Health. Pediatr Dent. 2008;30:54–8.
Lai B, Milano M, Roberts MW, Hooper SR. Unmet dental needs and
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