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Access to dental care for a selected group of children and adolescents with
ASD
By Banafsheh Abbasnezhad-Ghadi, D.D.S
A thesis submitted in conformity with the requirements for the degree of Master
of Science in Dental Public Health
Graduate Department of Dentistry
University of Toronto
© Copyright Banafsheh Abbasnezhad-Ghadi 2010
ii
Access to dental care for children and adolescents with Autism Spectrum Disorder
Specialty in Dental Public Health, Faculty of dentistry
Banafsheh Abbasnezhad-Ghadi
University of Toronto
2010
Abstract
Objectives: 1) to determine if children and adolescents with autism spectrum disorder
(ASD) encounter difficulties accessing dental care, 2) to identify barriers that diminish
access to dental care for this population. Methods: This descriptive study is based on a
web-survey conducted at the Geneva Centre for Autism in Toronto between November
2008 and March 2009. Forty-nine multiple choice questions including open-ended fields
were developed. Parents of children with ASD (ages 5–18) completed the survey.
Results: The majority of participants visited a dentist regularly (71%) and had private
dental insurance (64%). Parents/caregivers were more likely to have difficulties finding a
dentist as unmarried parents (OR=3.7, P=0.075) or when their level of education was
high school/less (OR=10.4, P=0.043). Conclusions: The majority of children/adolescents
with ASD had access to dental care. Difficulties accessing dental care were related to
family structure, parents’ education and their perception of dentists’ knowledge of ASD.
iii
I dedicate this research to my lovely son ‘Hessom’.
You were my inspiration to go through this challenge.
iv
Acknowledgements
First and foremost, I would like to thank my thesis supervisor and my mentor, Dr.
Herenia Lawrence, whose encouragement, guidance and unfailing support enabled me to
complete this research. This thesis would not have been possible without her.
I also owe special thanks to my committee members, Dr. Loh and Dr. Kenny, for their
patience and support which they have maintained from the outset. Their knowledge,
comments, and precise information have provided a significant contribution to this
research.
I extend my gratitude to The Geneva Centre for Autism in Toronto for giving me the
opportunity to conduct this research there.
I would also like to thank the Dental Research Institute (DIR), Faculty of Dentistry,
University of Toronto, for providing funds to support this research.
I owe special thanks to my wonderful parents whose life of sacrifice has allowed me to
follow my passions. No words can thank them enough.
v
Table of contents
Abstract ........................................................................................................................... ii
Acknowledgements......................................................................................................... iv
Table of contents ............................................................................................................. v
Chapter I: Introduction ................................................................................................ 1
1.1 Importance of oral health ............................................................................. 1
1.2 What is autism? ............................................................................................ 2
1.3 Characteristics of individuals with autism ................................................... 3
1.4 Prevalence in Canada ................................................................................... 5
1.5 Diagnosis ..................................................................................................... 5
1.6 Cause ............................................................................................................ 6
1.7 Cure & treatment ......................................................................................... 6
Chapter II: Literature Review ...................................................................................... 8
2.1The oral health status of children with autism .............................................. 8
2.2 Self-injurious behaviour (SIB) in dental patients with autism 12
2.3 Cooperation predictors and management for dental patients with autism .. 13
2.4 Summary of literature review ..................................................................... 16
2.5 Dental coverage for children with autism in Ontario ................................. 17
2.6 Oral health status of individuals with autism in Canada ............................ 18
2.7 Rationale for this study ............................................................................... 18
2.8 Study objectives .......................................................................................... 19
Chapter III: Materials & Methods ............................................................................... 20
3.1 Study design and study location ................................................................. 20
3.2 Ethics approval and consent form ............................................................... 20
3.3 Study participants ........................................................................................ 20
3.4 Study instrument ......................................................................................... 21
3.5 Study power and sample size ...................................................................... 21
3.6 Data analysis ................................................................................................ 22
Chapter IV: Results ...................................................................................................... 23
Responses ...................................................................................................................... 23
4.A Quantitative results ................................................................................................ 23
4.A.1 Univariate results ........................................................................................ 23
Child’s demographics .......................................................................................... 23
Parent/caregiver’s demographics ....................................................................... 24
Child general health and access to health care ................................................... 24
vi
Child’s oral hygiene habits ................................................................................. 25
Child’s dental history .......................................................................................... 25
Parent/Guardian’s perception of child’s oral health ............................................ 25
Access to dental care and provider’s attitude/knowledge of autism ................... 26
Dental insurance ................................................................................................. 27
Barriers to dental care ......................................................................................... 27 Access to dental care and treatment experience for children aged 4-8 VS those 9-19 yrs ............................................................................................................ 28
Barriers to dental care for children aged 4-8 VS those 9-19 yrs ........................ 28 The child’s last dental visit and the main reason for
this visit, for those aged 4-8 VS those 9-19 yrs ............................................... 29
4.A.2 Bivariate analyses results ......................................................................... 30
Child’s demographic characteristics ................................................................ 30
Parents/caregivers’ demographic characteristics ............................................. 30
Marital status ................................................................................................. 31
Having more children in the family and another child with ASD ................. 31
Age of parents/caregivers .............................................................................. 32
Child’s general health and access to health care .............................................. 33
Child’s oral hygiene habits .............................................................................. 34
4.A.3 Bivariate analyses of other variables ....................................................... 37
Demographic characteristics of parents/caregivers and private insurance 37
Government insurance and location of dental treatment ................................. 38
Private insurance and government insurance ................................................... 38
4.A.4 Multivariate analyses results (Logistic regression) ................................. 38
4.A.5 Demographic characteristics of the population in the Geneva centre
for those aged 5-18 years ................................................................................... 39
4.B Qualitative results ................................................................................................... 40
Type of phobia and sensory stimuli .............................................................................. 40
Type of reinforcement ................................................................................................... 40
Parents’/caregivers’ opinion of why the dental work was not adequate ...................... 41
Who recommended the dentist to the parent/caregiver? ............................................... 41
Parents’/caregivers’ comments ..................................................................................... 42
vii
Chapter V: Discussion .................................................................................................. 43
5.1 Limitations of this study .................................................................................... 53
5.2 Implications and recommendations ................................................................... 54
5.2.1 Future research .............................................................................................. 54
5.2.2 Recommendations for parents ....................................................................... 55
5.2.3 Recommendations for dental care providers ................................................. 55
Chapter VI: Conclusion ................................................................................................ 57
List of Tables ................................................................................................................ viii
List of Figures ............................................................................................................. ix
List of Appendices ........................................................................................................ ix
Bibliography ................................................................................................................ 111
viii
Tables
Table 1 Characteristics of study population (Child’s demographics) .................... 58
Table 2 Characteristics of study population (Parent’s demographics) ................... 59
Table 3 Child’s general health & access to health care ..................................... 60
Table 4 Child’s oral hygiene habits ................................................................... 61
Table 5 Child’s dental history ............................................................................ 62
Table 6 Parent’s/Guardian’s perception of child’s oral health .......................... 63
Table 7.1 Access to dental care and provider’s attitudes/knowledge of autism 64
Table 7.2 Access to dental care and provider’s attitudes/knowledge of autism
(Cont’d) ......................................................................................................................... 65
Table 8 Dental Insurance ................................................................................... 66
Table 9 Barriers to dental care ........................................................................... 67
Table 10 (Bivariate) Child’s demographic characteristics ................................ 68
Table 11 (Bivariate) Parent’s/caregiver’s demographic characteristics (1) ...... 69
Table 12 (Bivariate) Parent’s/caregiver’s demographic characteristics (2) ...... 70
Table 13 (Bivariate) Parent’s/caregiver’s demographic characteristics (3) ...... 71
Table 14 (Bivariate) Child’s general health and access to health care (1) ....... 72
Table 15 (Bivariate) Child’s general health and access to health care (2) ....... 73
Table 16 (Bivariate) Child’s oral hygiene habits (1) ......................................... 74
Table 17 (Bivariate) Child’s oral hygiene habits (2) ......................................... 75
Table 18 (Bivariate) Parent/guardian’s perception of child’s oral health
and child’s dental history (1) ............................................................................. 76
Table 19 (Bivariate) Parent/guardian’s perception of child’s oral health and
child’s dental history (2) .................................................................................... 77
Table 20 (Bivariate) Parent/guardian’s perception of child’s oral health and
child’s dental history (3) .................................................................................... 78
Table 21 (Bivariate) Parent/caregiver’s demographic characteristics
and having private insurance ............................................................................. 79
Table 22 (Bivariate) Location of dental treatment ............................................ 80
Table 23 (Bivariate) Government insurance (ODSP/OW/CINOT/Other) ........ 81
Table 24 Logistic regression model predicting difficulty locating a dentist ..... 82
Table 25 Logistic regression model predicting the dentist and staff not having
adequate knowledge about ASD (1) .................................................................. 83
Table 26 Logistic regression model predicting the dentist and staff not having
adequate knowledge about ASD (2) .................................................................. 84
Table 27 Characteristics of the Geneva Centre population aged 5-18 yrs ........ 85
ix
Figures
Figure 1 Access to Dental Care & Treatment Experience (%) ......................... 86
Figure 2 Access to Dental Care & Treatment Experience (%),
4-8 yrs VS 9-14 yrs ........................................................................................... 87
Figure 3 Barriers to Dental Care (%) ................................................................ 88
Figure 4 Barriers to Dental Care (%), 4-8 yrs VS 9-19 yrs .............................. 89
Figure 5 The child last dental visit (%), 4-8 yrs VS 9-19 yrs ........................... 90
Figure 6 Main reason for last dental visit (%), 4-8 yrs VS 9-19 yrs ................. 91
Figure 7 Type of phobia (%) ........................................................................... 92
Figure 8 Type of reinforcement (%) ............................................................... 93
Appendices
Appendix 1 CONSENT FORM ……………………………………………... 94
Appendix 2 Invitation poster ………………………………………………… 96
Appendix 3 Questionnaire …………………………………………………… 97
Appendix 4 Conceptual model ........................................................................ 105
Appendix 5 Phobia and sensory stimuli around the face and mouth .............. 106
Appendix 6 Positive reinforcement to motivate the child ............................... 107
Appendix 7 Parent/caregiver’s opinion of why the dental care was not adequate
......................................................................................................................... 108
Appendix 8 Who recommended your child’s dentist? .................................... 109
Appendix 9 Open comments ........................................................................... 110
1
Chapter I: Introduction
1.1 Importance of oral health
It is well-known that oral health has a significant impact on overall health and well-
being1. Studies show that oral diseases such as caries can have negative impacts on the
life of children and adolescents in different ways; for example, untreated caries can cause
pain and infection. This can directly reduce the intake of foods, thereby affecting body
weight, growth, and height of young children 2,3
. Oral diseases involve populations with
special needs as well, and children with disabilities may be less likely to receive needed
dental care compared to other types of medical care4,5
. A variety of studies have reported
that individuals with developmental disabilities have a higher prevalence of oral diseases
such as periodontal disease and dental caries compared with populations without
disabilities4,5
. Studies about oral health and barriers to care in individuals with disabilities
have become of interest to researchers but as yet there is no comprehensive study of oral
health and access to dental care for individuals with an autism spectrum disorder (ASD)4.
Individuals diagnosed with this disorder possess unique characteristics that impact
directly on their dental care and create challenges for both parents and dental
professionals6,7
. It is important that dental practitioners have an understanding of ASD
and the problems clinicians may potentially encounter when treating these patients.
2
1.2 What is autism?
Autism or Autistic Disorder (AD) was described for the first time in 1943 by an
American child psychiatrist, Dr. Leo Kanner, as a life-long neurological disorder that
affects a person‟s life in three ways8: impairments in social interaction, impairments in
communication, and repetitive and stereotyped behaviour.
The Diagnostic and Statistical Manual – 4th
Edition, Test Revision (DSM-IV-TR)
introduces the umbrella term “Pervasive Developmental Disorders” (PDD) that refers to a
variety of symptoms with different degrees of severity including: Autistic Disorder (AD),
Asperger‟s Syndrome (AS), Pervasive Developmental Disorder – Not Otherwise
Specified (PDD-NOS), Childhood Disintegrative Disorder (CDD), and Rett‟s
Disorder9,10
. However, the term “Autism Spectrum Disorder” (ASD) refers to three
related disorders: Autistic Disorder (AD), Pervasive Developmental Disorder – Not
Otherwise Specified (PDD-NOS), and Asperger Syndrome (AS)9. Autistic Disorder
(usually referred to as autism) is considered to be the most severe end of the spectrum9.
3
1.3 Characteristics of individuals with autism:
It is important for the dental practitioner to be aware of symptoms that could interfere
with dental care. DSM-IV-TR categorizes symptoms of ASD in three areas9,10,11
:
1- Impairment in social interactions, including:
Impairment in the use of multiple non-verbal behaviours to regulate
interaction (e.g., eye contact, facial expressions, body postures, and gestures)
Failure to develop peer relationships at the accepted developmental level
(preference for being alone)
Inability to spontaneously share enjoyment, interests, or achievements with
other people
Lack of social or emotional reciprocity
2- Impairment in communication, including:
Delay or absence of spoken language with no compensation from other
methods of communication (gesture or mime)
Stereotyped and repetitive use of language (echolalia, scripted speech)
In individuals with adequate speech, impairment in the ability to initiate or
sustain conversation with others
Lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level
4
3- Restricted, repetitive, and stereotyped behaviour, including:
Stereotyped and repetitive motor mannerisms (e.g., hand flapping, twisting or
whole-body movement)
Inflexible adherence to specific, non-functional routines or rituals
Preoccupation with parts of objects (e.g., spinning wheel)
Preoccupation with one or more stereotyped and restricted patterns of interest
that is abnormal either in intensity or focus
For a diagnosis of Autistic Disorder, at least 2 symptoms in the domain of reciprocal
social interaction, 1 symptom in communication, and 1 symptom in the domain of
restricted and repetitive behaviours is necessary with at least two other symptoms in any
domain. A diagnosis of PDD-NOS requires at least 2 symptoms in the domain of
reciprocal social interaction and 1 other symptom in the other two domains. The
diagnosis of Asperger Syndrome is usually given to older children who have no history
of language delays.
Some other characteristics associated with ASD that impact upon a dentistry visit are
intellectual disability, hyperactivity, limited attention span, and lower frustration
threshold that may lead to temper tantrum or bizarre vocalizations12
. Tactile (touch),
auditory, and sensory hypersensitivity in individuals with ASD can lead to unpredictable
reactions during dental procedures12,13
. Possible sensory stimuli that may trigger a strong
reaction in a dental environment include light, odour, noise from dental equipment, taste
of mouthwash, and the touch of cold instruments in their mouth12,13
. Practitioners should
5
also be aware that impediments to dental care can come from parents‟ reactions to their
children7. An autistic child‟s fear of dental procedures often deters their parents from
taking them to routine dental examinations and this, in turn, leads to higher levels of oral
disease7. Dentists should know that autistic children may also present with factitial (self-
inflicted) injuries. Self-injurious behaviour (SIB) in some children with autism may cause
damage to the oral structures such as the gingiva, bone and periodontal ligament, or even
the teeth14,15
. These injuries are produced by repetitive scratching with a fingernail,
rubbing with foreign objects, or biting the oral mucosa and/or tongue14,15
.
1.4 Prevalence in Canada:
According to the Autism Society of Canada, Autism spectrum disorders (ASDs) are a
common neurological disorder in children with an estimated 1 in 165 births being
diagnosed with the condition 16
. There are approximately 190,000 Canadians with ASD
and approximately 70,000 Ontarians with ASD16,17
. The ratio of Autistic Disorder in
males to females is 4:110,18
. ASDs occur in all ethnic, social, and income groups 19
.
1.5 Diagnosis:
An ASD displays its signs before the age of three10,20
. There is no medical test to
diagnose AD. Ideally, a team of professionals, including: a psychologist, psychiatrist,
neurologist, paediatrician, speech and language pathologist, and social worker carry out
the assessment to diagnose AD10
. Early diagnosis is very important in order to provide a
proper intervention program that should lead to improvement in social and
communication skills9,21
.
6
1.6 Cause:
There is no specific cause for an ASD, but genetics plays an important role18,22,23
. Twin
and family studies have revealed that autistic disorder (AD) is heritable about 90% of the
time18
. Siblings of autistic individuals have a 10% risk of being diagnosed with an ASD9.
It has been argued that exposure to MMR vaccine (Mumps, Measles, and Rubella) could
cause an ASD in children, but recent studies confirm that there is no link between MMR
and ASDs25,26
.
1.7 Cure & treatment:
There is no cure for an ASD18,27
, but early intervention, such as IBI (Intensive
Behavioural Interventions) can improve social and communication skills in children with
an ASD9,27
. Pharmacological therapy is also used to target symptoms such as anxiety or
aggression in individuals with autism, but at present there are no medications to improve
the core symptoms of an ASD12,28
.
Given its prevalence, it is likely that dental practitioners will encounter at least one, if not
more patients with ASD during their career. Therefore, it is important that dental
clinicians have an understanding of the variety of clinical characteristics that children
with an ASD present with, and issues they might encounter when treating such a patient.
The condition is quite complicated, both in its diagnosis and in its classification. ASDs
are challenging for the specialist to diagnose and treat so it is not necessary for dentists to
become expert, but being aware of common challenges and how to adapt to them will go
a long way in improving dental care received by children with ASD.
7
The review of Canadian studies shows that no dental research has been done regarding
this population. There is no information available about the prevalence of dental disease,
access to dental care, knowledge and attitudes of dental professionals towards patients
with ASD, or the availability of dental care services for the population with ASD in
Canada. Through this study, the first Canadian dental research that directly addresses this
population, we will describe characteristics of children with ASD and the possible
challenges they face in accessing dental care. The results of this study can lead us to
further research and help us to establish dental care programs based on their needs.
8
Chapter II: Literature review
There have been no studies carried out in Canada regarding dental treatment, and access
to dental care, of children with ASD. However, research has been done in other countries
that provides useful information and assists in identifying areas that require further study.
The literature can be grouped into three main categories: oral health status of children
with ASD; self-injurious behaviour (SIB) in dental patients with ASD; and cooperation
predictors and management of dental patients with ASD.
2.1 The oral health status of children with autism:
The most extensively investigated area of the three groups is the first that concentrates on
the status of oral health. All but three of the studies in this group involved comparing
children with ASD vs the general population. In the study by Shapira et al (1989)both
study groups had been diagnosed with autism29
. Two of the studies focused on caries
while the others considered a broader spectrum of dental health care.
A study by Fahlvik-Planefeldt et al (2001) compared the oral health in children with
autism to a gender- and age-matched control group of healthy children30
. It included an
investigation of the management of children with autism who were receiving dental care
within the non-specialized public dental service in Sweden. This case-control study
enrolled 20 of 28 identified cases. The results showed that the prevalence of restorations,
caries, gingivitis and degree of oral hygiene were similar in the two groups. Some
children with autism received sealant on their teeth; while the controls had none. Also the
9
number of children who received prophylactic treatment was greater than those in the
control group. The study demonstrated that this population was less cooperative during
dental treatment and 30% of children with autism needed specialized dental care. Seven
children in the case group were referred to a pediatric dentist, while none of the children
in the control group were. Sedation with nitrous oxide-oxygen or general anaesthesia was
used for five children in the autism group once or several times, while just one of the
controls received nitrous oxide-oxygen. Both groups used the same source of drinking
water containing fluoride (1 ppm). It was hypothesized that this may have been the reason
why there were no differences in caries prevalence between two groups. Also, the study
suggested that the children with autism were less co-operative during dental treatment,
and that may have affected the precision of caries diagnosis during examination. Thus
caries may be underestimated for these individuals. In this study, dentin caries in
permanent teeth was more prevalent in autistic children and more prevalent in primary
teeth in controls. Eight of 20 children with ASD (forty percent) used medication on a
regular basis which probably accounted for the higher prevalence of dentin caries in their
permanent teeth. The study suggested that the use of prophylaxis treatments such as
sealants is recommended as a means of achieving good dental health for children with
ASD. However, the study was not without its limitations, including the small population
of autistic children studied (20 patients), unclear methods for evaluating their oral
hygiene, or the type of medications affecting their oral health.
While the study by Fahlvik-Planefeldt showed that there were no differences in the level
of dental caries between autistic children and healthy children, Namal et al (2007) found
10
that the level of caries in children with autism was even lower than those without
autism31
. Through a cross-sectional study, he obtained information about the socio-
demographic status of families, and oral care habits of 62 autistic children and 301 typical
children between the ages of 6 and 12. Data was taken from existing dental records and
logistic regression analysis was applied. The study showed that children with autism
consumed less sugar than non-autistic children at younger ages. The results showed that
autistic children in this study had highly educated mothers that controlled their child‟s
consumption of sugar, brushed their child‟s teeth and took care of their child‟s oral care.
These findings account for a lower caries prevalence in autistic children compared to
non-autistic children.
Kopycka-Kedzierawski et al analyzed data from the 2003 National Survey of Children‟s
Health in the US to determine the dental needs and the dental status of children with ASD
(1-17 years of age)32
. The study illustrated that parents of children with ASD are more
likely to report that their child‟s dentition was in fair to poor condition than parents of
children without ASD. This finding was in contrast to studies by Fahlvik-Planefeldt and
Namal that indicated the prevalence of dental disease such as caries in autistic dental
patients was similar or better than in children without ASD. Tooth restoration, dental
caries, and misaligned teeth were the most prevalent dental problems experienced by
children with fair or poor dental condition regardless of whether they had ASD or not.
Also autistic children were more likely to have problem with oral hygiene compared to
non-autistic children (13% vs 4%) and this result was not statistically significant due to
11
the skewed distribution of the oral hygiene data and the unbalanced samples (69 children
with autism vs 7002 non-autistic children).
Loo et al (2008) used a cross-sectional study to investigate the caries status and
behaviour of 395 dental patients with autism compared with 386 non-autistic patients33
.
Data were taken from non-archived records of the dental department of the Franciscan
Hospital for Children in Boston. Similar to previous studies by Fahlvik-Planefeldt and
Namal, this study showed that autistic patients were 70.5% less likely to have a history of
caries than non-autistic patients. The study indicated that autistic patients were
significantly more likely to be uncooperative during dental treatment and required their
dental treatment under general anesthesia which was in accordance with the study by
Fahlvik-Planefeldt.
In 1989, the oral health and dental needs of children with autism were investigated by
Shapira et al29. They evaluated the oral health of two groups of patients with autism:
fifteen non-institutionalized children with a mean age of 11years, and 17 institutionalized
adults with a mean age of 22 years. Almost half of the institutionalized adults with autism
had severe periodontal disease and almost half of them needed periodontal surgery. Many
institutionalized children needed periodontal treatment as well. Institutionalized adults ate
sweets, had poor oral hygiene, and did not use fluoride, but surprisingly, had lower mean
numbers of decayed, missed, and filled permanent teeth (DMFT) when compared to
typical adults of the same age (7.11 vs 11.63). The group of non-institutionalized children
did not experience mean DMFT scores at different levels from their counterparts in the
12
typical population. This study showed that in contrast to what was believed,
institutionalized adults with autism had lower scores of DMFT compared to the typical
population. In general, the study concluded that more oral disease in autistic patients is
related to peridontal disease, and the caries prevalence in this population is similar or
lower than the typical population.
2.2 Self-injurious behaviour (SIB) in dental patients with autism:
The second group category consists of one study carried out by Medina et al (2003)14.
This study investigated oral lesions in autistic children caused by self-injurious behaviour
(SIB). The study was based on a case report of a four-year old female with autism being
treated at the Pediatric Postgraduate Department at the Universidad Central de
Venezuela, who was found to have “caries, coronal fracture, factitial gingivitis, factitial
periodontitis, self-extraction of primary teeth and permanent teeth buds, non-specific oral
ulcer”. Non-contingent reinforcement (e.g. extinction, time-out, alternative forms of
stimulation, environmental modifications, sensory deprivation, physical restraint) and
later positive reinforcement (coloured stickers) were used. Thirty-minute intervals
between positive reinforcements were used. Frequency of reinforcement could reduce
SIB in this case report.
13
2.3 Cooperation predictors and management for dental patients with autism:
The final category is that of cooperation predictors and management for dental patients
with autism. There are five major studies that have been published on this subject. Each
study had a very different approach to investigating the cooperation of autistic dental
patients and the methods for managing them.
Potential predictors of cooperation in autistic patients during dental appointments were
studied by Marshall et al (2007)6. Their findings were based on a questionnaire filled out
by 108 parent/child pairs and their dentists. The results of the study indicated that an
autistic child would be uncooperative during dental treatment if: the child is partially or
not toilet trained after age four (P=0.02), the child is not able to sit for a haircut (P=0.01),
the parents brush the child‟s teeth (P=0.004), the child is not able to read after age six
(P<0.001), and the child is non-verbal or echolalic (P=0.005). This study suggested that
these five questions (toilet training, tooth brushing, haircut, academic achievement, and
language) could be used as a guide for dentists to predict a child‟s ability to cooperate
during a dental appointment.
Kamen et al (1985) investigated dental management of autistic children 34
. Twenty-eight
parents/caregivers of children and adolescents with autism answered a questionnaire. The
breakdown of management methods used to provide dental treatment for these patients
showed that: six patients received their dental treatment under local anesthesia, five
received oral premedication, one received an intravenous sedation, and eight underwent
general anesthesia. The study suggests that the use of general anesthesia is the best
14
strategy when treating autistic children who require extensive dental treatment. However,
the authors recommended that general anesthetic should be used only after an attempt had
been made to treat the child in the conventional manner, either sitting/lying in the dental
chair.
A review of patient charts was carried out by Klein et al (1999) to identify characteristics
of autistic individuals, such as cooperation, in relation to dental treatment35
. Data
regarding demographics, dental findings and management techniques were collected for
43 patients (mean age 13.5 years) from the Pediatric Dentistry Department at the
University of Iowa. Using Frankl‟s categories of behaviour, patient‟s behaviour during
dental treatment could be divided into four categories: definitely negative, negative,
positive, and definitely positive36
. In this study, no patient was in the definitely positive
group and they were divided into three groups of “definitely negative”, “negative”, and
“positive” behaviour. Behaviour management such as communication, pharmacological
and immobilization techniques were used in order to successfully treat these patients.
Immobilization techniques including holding patients‟ hands by their parents/aides, knee-
to-knee technique, and papoose board were used. The knee-to-knee technique was mainly
used in younger patients. In contrast, the papoose board was used in groups that had
“definitely negative” and “negative” behaviour and also in older patients who were able
to fight during dental treatment. Repeated breaks during dental treatments were effective
for some older patients. Premedication and nitrous oxide with oxygen were also used to
manage these patients during dental treatment. Dental treatments in operating rooms
(OR) under general anesthesia were used when other management techniques failed.
15
However, general anesthesia was used for 69% of patients with definitely negative
behaviour.
Bäckman and Pilebro (1999) evaluated the use of visual pedagogy to introduce dentistry
to patients with autism37
. A picture book describing every step involved in a visit to a
dentist‟s office was used to familiarize children with the process. The books were shown
to sixteen children with autism over a period of one and half years and then a comparison
was done between this group and the group of 16 autistic children of the same age who
did not receive the visual pedagogy. The study indicated that children who were shown
the book were fully cooperative during a dental examination with probe and mirror
compared to controls (11 vs 4). Also in the intervention group, two children received
dental restorations and two received fissure sealants while none of the controls accepted
any of these dental procedures. Seven of the controls received their dental treatment
under general anesthesia while two of the children with severe dental caries in the
intervention group had general anesthesia for their dental treatment. Based on this small
study, it can be inferred that visual pedagogy can be considered an effective way for
preparing children with autism to undergo dental treatments.
Friedlander et al (2006) reviewed the neuropathology, medical management and dental
implications of individuals with autism through a MEDLINE search38
. Their study
indicates that dentists caring for individuals with autism must be familiar with its
symptoms in order to facilitate cooperation on the part of the autistic child. Dentists
should also be aware of the side effects of medications used to treat the specific
16
behaviours of individuals with autism. These medications can cause orofacial and
systemic reactions and also interact with therapeutic agents that dentists might use. For
example, Risperidone and Olanzapine, which are prescribed for individuals with autism
to manage aggression, irritability, and self-injurious behaviour, can cause motor
disturbances that affect speech and swallowing. Olanzapine can also result in xerostomia.
Fluoxetine and Sertraline, used in people with autism to manage their fear, anxiety,
depression and repetitive behaviours, can result in xerostomia, dygeusia (changing taste
sensation), stomatitis and glossitis. Fluoxetine may rarely cause orofacial movements
(dyskinesia) like tongue protrusion. Carbamazepine and Valporate, which are used in
people with autism to manage mood functions, aggression, and seizures, can cause
leucopenia and thrombocytopenia. Combining these medications with aspirin or other
nonsteroidal anti-inflammatory drugs that already have hemostatic mechanisms can result
in excessive bleeding. Clarithromycin may result in carbamazepine toxicity by inhibiting
metabolism in the liver. This study provided an excellent review of pharmacological side
effects experienced by autistic patients on various medications.
2.4 Summary of literature review:
Contrary to the idea that individuals with special needs experience more oral and dental
disease, studies show that autistic patients have less or the same prevalence of dental
disease (e.g. dental caries) compared to the healthy population. However, there are still
disputes among studies about the prevalence of periodontal disease and dental caries in
this population, with some studies indicating that periodontal disease can be more
prevalent in this population compared to typical healthy persons. The majority of the
research was based on a small group of autistic patients and there was no actual reason to
17
explain why the prevalence of dental disease is similar or even lower than that of the
healthy population.
The other major area of research investigated their behaviour as dental patients and
methods for the safe delivery of dental treatment. Delivering successful dental treatment
depends on each autistic individual and the ability of dentists to assess and manage these
patients during treatment. Behavioural and pharmacological techniques were used for
managing autistic patients during dental treatment but there was no universal patient
management technique or guideline for this population.
There has been no comprehensive study to date that has investigated the challenges faced
by parents/caregivers in their attempts to access dental care for their autistic children. No
Canadian dental research has been undertaken to study oral health, prevalence of dental
diseases, attitudes of dental care professionals or access to dental care for this population.
This literature review indicates the necessity to have more dental research focused upon
the autistic population, specifically in the area of access to dental care.
2.5 Dental coverage for children with autism in Ontario:
There is no special dental coverage (financial support) in Ontario for children with
autism. Children with developmental or physical disabilities such as autism, who are 0-18
years of age and from a low income family (annual income under $42,000) are eligible
for dental assistance under the Ontario Disability Support Program (ODSP) that covers
basic dental procedures. There are two other provincial programs that cover dental
treatment for low income families: Ontario Works (OW, previously social assistance or
18
welfare) and Children In Need Of Treatment (CINOT). Individuals with ASD are eligible
for financial assistance through these programs but only if they fit specific criteria.
2.6 Oral health status of individuals with autism in Canada:
There is no published information about the oral health status of individuals with autism
in Canada. To our knowledge no research has been undertaken to evaluate the oral heath
status of autistic children and their access to dental care in Canada.
2.7 Rationale for this study:
Although some studies show that children with ASD may have similar or improved
dental health when compared with a control group, these may have involved a biased
sample who were actually accessing dental care. Other studies have shown that children
with ASD have worse dental health which may be the result of poor access to dental care.
This study proposes to identify information that will allow a better understanding of any
barriers they may face in obtaining adequate dental care. It is important that the
provincial government takes responsibility for providing accessible dental care to this
population. We hope to be able to provide a comprehensive source of dental information
for families of individuals with autism through autism organizations such as the Geneva
Centre, the Surrey Place, and others in the future. This information can include the name
of dentists who work on individuals with autism, available provincial and governmental
dental care programs and how to access them.
19
2.8 Study objectives:
The objectives of this study are:
1. To determine if children and adolescents with ASD encounter difficulties
accessing dental care
2. To identify barriers that diminish access to dental care for this population.
The goal of this study is to provide a better understanding of accessibility to dental care
for young individuals with ASD.
20
Chapter III: Materials & Methods
3.1 Study design and study location
This descriptive study is based upon a web-survey that was conducted at the Geneva
Centre for Autism in Toronto. This centre specializes in the development and delivery of
clinical intervention, support and training for individuals with ASD, their families and
professionals.
3.2 Ethics approval and consent form
Ethics approvals for the study were obtained from the University of Toronto Research
Ethics Board (REB) and the institution‟s REB. Each parent/guardian was asked to review
the consent form outlining the purpose of the study and its procedures before beginning
the web-based survey (Appendix 1).
3.3 Study participants
The study used systematic sampling that of all parents of children between the ages of 5
and 18 with ASD attending the Geneva Centre for Autism between November 2008 and
March 2009. This specific sub-population was asked to complete a web-based survey.
Parents/primary caregivers attending the Geneva Centre for special services of their
autistic child/adolescent were notified of this project by the Geneva Centre through its
Education and Training for Parents flyer and also its Parent Network email newsletter
that went out on a weekly basis to 2000 families. This web-based survey was posted on
the Geneva Centre website at http://www.autism.net/content/view/157/233/. The online
survey with detailed information was available at
21
http://www.surveymonkey.com/AutismDentalCare. The survey was also available on line
for all parents/caregivers of children with autism who visited the Geneva Centre website
but did not utilize the Centre‟s services. An invitation poster was placed in the main
lobby of the Geneva Centre to inform the parents of this study (Appendix 2).
3.4 Study instrument
Forty nine multiple choice questions including open-ended fields were developed based
on a review of the relevant literature and covered sections on: child‟s background, dental
history, and oral hygiene habits; caregiver‟s perception of their child‟s oral health; child‟s
access to dental care and availability of family dental insurance; other barriers to
obtaining dental services; and caregiver‟s socio-demographic information (Appendix 3).
The questionnaire was pilot tested with a convenience sample size of parents of young
individuals with autism, pediatricians and pediatric dentists and the suggested revisions
were made.
The conceptual model or framework used to design the questionnaire is presented in
Appendix 4 and is based on Aday and Andersen‟s Behavioural Model of Health Services
Use39
. This model has recently been used to examine factors that may influence access to
dental care for children with special health care needs in Southern United States40
.
3.5 Study power and sample size
Based on the results of our pilot interviews we estimated that approximately 67% of
parents would report difficulty locating a dentist to treat their children with ASD. This
22
figure compares with 31% of Ontarians who had not consulted a dental professional in
the past twelve months (2005)41,42
. Using these proportions, the minimum sample size
required was 60 complete responses. With the proposed sample size of 60, the study had
a power of 81.3% to yield a statistically significant result. The criterion for significance
(alpha) was set at 0.05 (2-tailed).
3.6 Data analysis:
The data were analyzed using descriptive statistics, chi-square analysis and logistic
regression. The dependent variables were whether the child obtained needed dental care
as follows: difficulty finding a dentist in private office, received all needed dental
treatment, and parents‟ perception that the dentist and staff had adequate knowledge of
ASD.
The independent factors were: child and caregiver‟s demographics, child‟s oral hygiene
habits, general heath status, access to health care, dental history, parents‟ perception of
child‟s oral health and parents‟ perception of provider‟s attitude/knowledge of autism,
availability of dental insurance and access to dental care.
The independent factors were tested for statistical significance in bivariate and
multivariate analyses using SPSS, version 16.0. In multivariate analyses (logistic
regression), the level of significance was set at a more liberal value of P ≤ 0.15. All tests
were two-tailed and interpreted at the 5% level. To analyze some of the qualitative data,
descriptive statistics were applied; however, the results were not mutually exclusive as a
question could have multiple answers.
23
Chapter IV: Results
Responses:
Though eighty-one people logged in to this web-survey, thirteen of them did not answer
any questions. Two participants could not answer the web-survey questionnaire due to
some technical difficulties and contacted the investigators. Paper-based questionnaires
were mailed to them. Both completed the consent form and questionnaire and returned
them to investigators. Our analysis, therefore, was based on 70 participants. Out of
seventy, sixty-two completed the survey (88.6%).
4.A Quantitative results:
4.A.1 Univariate results:
Child’s demographics
Table 1 shows the demographic characteristics of children in this study. Most children
were male (81.4%). The ages ranged between 4 and19 years (Mean = 9.8, SD = 3.6). Half
the children were 4-8 years old and the other half were 9-19 years old. The school
attendance breakdown was as follows: elementary school (42.9%), school or classroom
for children with special needs (25.7%), high school (11.4%), kindergarten (10%), and
home schooled (4.3%). The majority of the children lived in Toronto (81.4%). English
was the primary language at home (77.1%). Only 1.4% of them had French as their first
language. About 10% spoke languages other than English or French.
24
Parent/caregiver’s demographics
Most primary caregivers were mothers (75.7%) and the rest were fathers (12.9%). Mostly
mothers spent more time with the child (75.7%). Then, based on frequency, fathers
(7.1%), grandparents (2.9%), and babysitters (1.4%) spent time with the child. Nearly
56% of parents were 35-44 years old, 24.3% were older than 45, and 8.6% were aged
between 25 and 34 years old. Parents/caregivers were mostly married (65.7%). About
17.1% were divorced/separated, 4.3% were single, and 1.4% were widowed.
Parents/caregivers‟ level of education was: 41.4% completed university, 27.1%
completed college or technical school, 10% completed high school, 2.9% had less than
high school education, and 7.1% had advanced educational backgrounds. More than half
the population (54.3%) had other children. A few had another child with ASD (7.1%).
Child general health and access to health care
Forty-seven percent of parents/caregivers reported that their child‟s health was
excellent/very good, 35.7% good, and 10% fair (Table 3). More than half of children
(57.1%) spoke fluently, one third used 3-4 words or phrases, 2.9% single words, and less
than 2% spoke no words. Nearly 83% of the children had phobias (e.g. sound, new
environment) and 85% were motivated by positive reinforcement. About one third of the
children were diagnosed at the age of three or before, 35.7% after age 3 and before age 5,
about 21% after age 5, and a few of the parents (4.3%) could not remember the age of
diagnosis. More than half of the study population had both private and public (OHIP)
health care coverage. About 34% of the population just had OHIP, 7.1% had only private
insurance, and 1.4% had no coverage.
25
Child’s oral hygiene habits:
Table 4 shows the oral hygiene habits of children as reported by the parent/caregiver.
Sixty percent brushed their teeth more than ten seconds (arbitrary time). A majority of
them (57 %) permitted somebody else to brush their teeth, 24.3% rarely, and 11.4% did
not allow it. Less than 3% brushed their teeth three times or more each day. About 39%
brushed twice, 37% once, and 14% less than once a day. Almost 33% used an electric
tooth brush.
Child’s dental history
As shown in Table 5, the child‟s first dental visit based on different age groups was: 4.3%
at the age of 0-1 year, 15.7% at two years of age, 28.6% at three years of age, 8.6% at
four years of age, 25.7% between 5-6 years, and less than 3% never had a dental visit. In
the past twelve months, the children had these dental experiences: about 23% toothache,
36% dental restoration, 13% tooth extraction, 7% oral self-injury, and 6% dental
emergency visit. The types of anesthetic used in the emergency cases were: general
anesthetic (14.3%), about 7% intravenous sedation, less than 6% local anaesthetic, and
17% had no need for any type. It should be mentioned that 55.7% of participants did not
respond to this question, as the question was only applicable for emergency cases.
Parent/Guardian’s perception of child’s oral health
Table 6 shows that 20% of the children had excellent/very good oral health; about 37.1%
had good oral health, 24.3% fair oral health, and 10% poor oral health. Ninety percent of
the parents reported that oral health was an important part of general health.
26
Access to dental care and provider’s attitude/knowledge of autism
Tables 7.1, 7.2 and Figure 1 provide information about access to dental care and the
attitude of dental care providers. About 71% of the children had regular dental visits. The
child‟s dentist had been recommended: 10% by other parents who had children with
ASD, 5.7% by a social worker, 7.1% by friends and other relatives, 25.7% by other
sources (e.g. family physician, pediatrician, family dentist), and in 30% of the cases, the
child‟s dentist was the family‟s dentist. Most of the dental treatment took place in a
private office (70%). Nearly 19% of the dental treatment was performed in hospitals. A
few received dental care in other places (e.g. other country). Thirty percent of parents
experienced difficulty finding a dentist in a private office. About 6% had transportation
problems travelling with their children for their dental appointments. Based on parents‟
reports, the child‟s last dental visit was: 75.5% less than one year ago, 7.1% one year to
less than two years ago, 4.3% more than two years ago, and less than 3% never had a
dental visit. The main reported reasons for the child‟s last dental visit were: 34.3%
regular check up, 18.6% dental cleaning, 11.4% tooth filling, 1.4% gum problem, 7.1%
tooth extraction/surgery, 1.1% toothache, and less than 13% other reasons. Nearly 63% of
children received all needed dental treatment and 64% received adequate dental
treatment. About 33% of parents reported problems during the child‟s dental treatment.
About 57% of children had unusual fear and anxiety of a dental visit. Parents‟ perceptions
that the dentist and staff had ASD knowledge were: 25.7% adequate, 21.4% adequate but
still some difficulties, 21.4% somewhat adequate, and 17.1% inadequate.
Parents/caregivers perceived that the specialist dentists (two that were reported were
orthodontists and pediatric dentists) and their staff‟s knowledge of ASD were: 21.4%
27
adequate, 16% adequate but problematic, nearly 9% somewhat adequate, and 40%
inadequate.
Dental insurance:
Table 8 shows that the majority of the study population (64.3%) had private dental
insurance that covered part or the total costs of their child‟s dental treatment. The balance
of parents/caregivers reported having government insurance that covered part or even the
total expenses of their child‟s dental treatment as follows: 17.1% ODSP and
approximately 3% OW.
Barriers to dental care:
Table 9 and Figure 2 illustrate barriers to dental care for parents of children with autism.
Approximately 21% could not afford the cost of dental treatment for their autistic child
(advanced dental treatment that was not covered by insurance such as implants,
orthodontic treatment, general anesthesia/conscious sedation in a private office etc).
About 37% of parents had difficulty finding a dentist who knew about ASD. Almost 23%
experienced difficulty finding a dentist who was willing to spend the time gaining the
child‟s trust. About 24% reported difficulty with the cost of their child‟s dental treatment.
Less than 3% reported that they were too busy to take the child to the dentist. Less than
5% did not have anybody to look after their other children during the child‟s dental
appointment. Up to 29% of children were afraid of the dentist. About 37% of children
were not cooperative during the dental treatment.
28
Access to dental care and treatment experience for children aged 4-8 VS those 9-19
As can be seen on Figure 3, 85% of children aged 4-8 and 76% of children aged 9-19,
visited a dentist regularly. More than 75% in both groups received their dental treatment
in a private office. More than 60% in both groups had some fears during their dental
treatment. Thirty six percent of parents of those 9-19 and 46% of parents of children 4-8
had difficulty finding a dentist. Parents reported that there were problems during the
dental treatment in more than one third of both age groups. Thirty percent of the younger
group did not receive all their needed dental treatments while this number dropped to
19% for the older group. Almost one quarter of both groups did not receive adequate
dental treatment as reported by parents/caregivers. Twenty-one percent of children aged
4-8 had their dental treatment in the hospital while it was 17% for the older group.
Barriers to dental care for children aged 4-8 VS those 9-19 yrs
Figure 4 shows the barriers experienced by parents to accessing dental care for their
children. Fifty-one percent of parents/caregivers of children aged 4-8 and 23% of those in
the older group reported difficulties finding a dentist who understood the child‟s
condition. Forty percent of those 4-8 and 34% of those 9-19 were not cooperative during
the dental treatment. Twenty-three percent of the younger group and 34% of the older
group were afraid of dentists. Fourteen percent of parents of those aged 4-8 and 34% of
parents of those 9-19 had difficulties with the cost of dental treatment for their child.
Seventeen percent of parents of children 4-8 and 29% of parents of the older group
experienced difficulties finding a dentist willing to spend time gaining the child‟s trust. In
3% of the younger group and 6% of the older group, parents/caregivers had difficulties
29
finding a person to take care of other children during the dental treatment. In both groups,
3% of parents/caregivers, all of whom were single parents, were too busy to take their
child to the dentist.
The child’s last dental visit and the main reason for this visit, for those aged 4-8 VS
those 9-19 yrs
Figures 5 and 6 indicate that the majority of children aged 4-8 (79%) and those aged 9-19
(88%) had their last dental visit less than one year ago. The main reason for most children
in both groups was for a regular check up (39%) and cleaning (21%). Another reason for
the last dental visit was to have a dental restoration that was more common for those aged
9-19. Dental visits for tooth extraction and dental surgery were also more common in
children aged 9-19 (14%) compared to those aged 4-8 (3%).
30
4.A.2 Bivariate analyses results:
Because the sample size was small in this study, the following criteria were used to
choose which variables were important as predictors:
Odds Ratio (OR) ≤ 0.3 or OR ≥ 3.0
and/or
P-value ≤ 0.10
Child’s demographic characteristics
As can be seen in Table 10, parents/caregivers of children aged 4-8 are 1.52 times more
likely to find a dentist in a private office than parents/caregivers of children aged 9-19
(OR= 1.52, P = 0.461). Compared to the older age group, the younger age group was less
likely to receive all their needed dental treatment (OR=1.8 = 1/0.55, P = 0.332). Also the
results indicate that parents were less likely (1.4 times = 1/0.7) to perceive that the dentist
and staff had adequate knowledge of ASD for children in the older group (P =0.533).
None of the bivariate results for the independent variable, age of the child, was
statistically significant.
Parents/caregivers’ demographic characteristics
Marital status
Tables 11 shows the association between parents/caregivers‟ marital status and dependent
variables. The results of bivariate analyses showed that not being married/other marital
status increased the odds (approximately 3 times) of the difficulty in finding a dentist in a
private office (P = 0.166). Not being married/other marital status, however, when
31
compared with the statistics for those married, decreased the odds of receiving all needed
dental treatment and of finding dentists and staff knowledgeable about ASD (OR= 2.3, P
=0.343).
As can be seen in Table.11, parents/caregivers whose level of education was high school
or less were nearly nine times more likely to have difficulty finding a dentist in a private
office compared to those whose level of education was higher than high school. This was
statistically significant according to our criteria (P =0.07). The level of
parents/caregivers‟ education made no difference to their children receiving all needed
dental treatment. Parents/caregivers with levels of education higher than high school were
1.4 times more likely to perceive that dentists and staff did not have adequate knowledge
of ASD; this was not statistically significant (P =0.69).
Having more children in the family or having another child with ASD
Table 12 describes that parents/caregivers with more children are three times more likely
(OR = 1/0.33) to have difficulties finding a dentist in a private office and statistically this
is significant (P =0.079). Also parents with more children were more likely to report that
their child did not receive all needed dental treatment but the result was not statistically
significant (P =0.426).
Having another child with ASD was associated with decreased odds of finding a dentist
in a private office and receiving all needed dental treatment but this was not statistically
significant (P =1). Parents/caregivers who had another child with ASD were 2.4 times
32
less likely (OR = 1/0.41) to perceive that the dentist and staff did not have adequate
knowledge of ASD but this result was not statistically significant (P =0.578).
Age of parents/caregivers
Table 13 illustrates the association of parents/caregivers‟ age with the three outcome
variables. As can be seen in this table, parents/caregivers who were 34 or younger were
more likely (OR=1.42) to have difficulties finding a dentist in a private office than
parents older than 34. However this finding was not statistically significant. This table
shows that parents/caregivers 34 or younger were 11 times (OR=1/0.09) more likely to
perceive that their child did not receive all needed dental treatment and this result was
statistically significant (P =0.049). Parents/caregivers 34 years of age or younger were
more likely to perceive that dentists and staff did not have adequate knowledge of ASD
but this result was not statistically significant (P =0.303).
Also it was shown in the table that parents aged 34-44, compared to other ages, were
more likely to have difficulties finding a dentist in a private office, a fact that was not
statistically significant. Parents/caregivers 34-44 years old were twice less likely than
other ages to perceive that their child did not receive all needed dental treatment and this
result was not statistically significant (P =0.249). Also this group compared to other age
groups was less likely to perceive that dentists and staff had adequate knowledge of ASD
and this result was not statistically significant.
33
Another finding in this table is that parents/caregivers younger than 45 years were two
times more likely to have difficulties finding a dentist in a private office, a finding which
was not statistically significant. Also the results show that there was no association
between those parents/caregivers who were either younger or older that 45 and the other
two outcomes.
Child general health and access to health care:
Table 14 shows that parents/caregivers were two times more likely to have difficulties
finding a dentist in a private office when the child‟s general health was fair/poor but this
finding was not statistically significant (P =0.637). There was no important association
between the general health of the child and receiving all needed dental treatment in
bivariate analyses. The table shows that parents perceived that dentists and staff were
almost four times (OR=1/0.27) less likely to have adequate knowledge of ASD when the
general health status of the child was excellent/good but this was not statistically
significant but deemed important according to our criteria for selecting predictors (P
=0.182).
This table also shows that when the child‟s ability to speak was „fluent‟, it increased the
odds of finding a dentist in a private office (OR= 2.06) and receiving all needed dental
treatment (OR=1/0.45). However these findings were not statistically significant. The
analyses show that there was no association between the child‟s ability to speak and the
parents‟ perception of dentist‟s and staff‟s knowledge of ASD.
34
Table 15 illustrates that parents/caregivers were four times (OR=1/0.25) more likely to
have difficulties finding a dentist in a private office when the child had a phobia,
however, this finding was not statistically significant but clinically important (P =0.381).
The child‟s phobia was not associated with other outcomes. The odds of finding a dentist
in a private office was decreased when the child‟s age of diagnosis with ASD was more
than three, however, this result was not statistically significant. The age of diagnosis with
ASD was not associated with parents‟ perception of the child receiving all needed dental
treatment or the dentist and staff having knowledge of ASD.
Child’s oral hygiene habits:
Table 16 shows that there was no association between duration of brushing and finding a
dentist in a private office. When the duration of brushing was more than ten seconds, it
was more likely (OR=2.4) that the child received all needed dental treatment but this was
not statistically significant (P =0.137). When the duration of brushing was less than ten
seconds, parents perceived that the dentist and staff were less likely to have adequate
knowledge of ASD and it was not statistically significant. Also this table shows that when
the child did not permit brushing or rarely permitted it, parents/caregivers were more
likely to have difficulties finding a dentist in a private office but the result was not
statistically significant. There was no association between permitting brushing and
receiving all needed dental treatment. This table shows that when the child did not permit
brushing or rarely permitted it, parents perceived that the dentist and staff were more
likely not to have enough knowledge of ASD but this finding was not statistically
significant.
35
As can be seen on Table 17, when the child brushed two or more times, parents were
more likely (to have difficulties finding a dentist and were less likely to perceive that the
child received all needed dental treatment and these results were not statistically
significant. Also when the child brushed two or more times, parents/ caregivers perceived
that the dentist and staff were less likely to have adequate knowledge of ASD but this
finding was not statistically significant. Also Table 17 shows when a child used an
electric toothbrush, parents/caregivers were two times more likely to have difficulties in
finding a dentist in a private office and two times less likely to perceive that the child
received all needed dental work; these findings were not statistically significant. It was
shown in this table when the child did not use an electric toothbrush, dentists and staff
were less likely to have adequate knowledge of ASD and this finding was not statistically
significant. Another finding in this table indicates that having private insurance decreased
the odds of finding a dentist in a private office and the odds of receiving all needed dental
treatment. It should be noted, however, that none of these results were statistically
significant. Also the table shows that when parents had private insurance they perceived
that dentists and staff were four times more likely to have adequate knowledge of ASD
and this finding was statistically significant according to our criteria.
As can be seen in Table 18, the child‟s fair/poor oral health decreased the odds of finding
a dentist in a private office, receiving all needed dental treatment, and perceiving that
dentists and staff had adequate knowledge of ASD; however these results were not
statistically important. This Table illustrates when the child‟s first dental visit was after
age 3/never, it increased the odds of finding a dentist in a private office and receiving all
36
needed dental treatment but these findings were again not statistically significant. This
table illustrates that when the child‟s first dental visit was after age 3/never, parents
perceived that the dentist and staff were three times more likely not to have adequate
knowledge of ASD. This result was statistically significant (P =0.076). This table shows
that when the main reason for the last dental visit was a regular check up/cleaning, it
increased the odds of finding a dentist in a private office, decreased the odds of receiving
all treatment, and decreased the odds of the dentist and staff having adequate knowledge
of ASD. However, none of these findings were statistically significant.
As can be seen in Table 19, when the child had toothache in the past twelve months,
parents/caregivers were four times more likely to have difficulties finding a dentist in a
private office, a statistically significant value (P =0.051). Toothaches decreased the odds
of the children receiving all needed dental treatment and the parents perceiving that the
dentist and staff had adequate knowledge of ASD; however these results were not
statistically significant. This table illustrates that a dental emergency decreased the odds
of finding a dentist in a private office and it was not statistically significant. There was no
association between a dental emergency and receiving all needed dental treatment. When
there was a dental emergency, parents perceived that the dentist and staff were less likely
(OR= 2.7=1/0.37) to have adequate knowledge of ASD and it was not statistically
significant (P =0.571).
Table 20 shows that having a tooth restoration decreased the odds of finding a dentist in a
private office. This fact was not statistically significant (P =0.107). Also the table shows
37
that when the child needed to have a tooth restoration, it was less likely to receive all
needed dental treatment and also parents perceived that the dentist and staff were less
likely to have adequate knowledge of ASD. These findings were not statistically
significant. Table 20 indicates that when tooth extraction was needed, parents/caregivers
were three times more likely to have difficulties finding a dentist in a private office and
that this result was not statistically significant, but clinically significant. Also it can be
seen that a tooth extraction increased the odds of receiving all needed treatment and
significantly decreased the odds of the dentist and staff having adequate knowledge of
ASD as perceived by the parents. Table 20 also shows that self-injuries to the mouth were
not associated with finding a dentist in a private office. As well, self-injury to the mouth
increased the odds of the children receiving all needed dental work and decreased the
odds the dentist and staff having adequate knowledge of ASD (as perceived by the
parents); however, none of these results were statistically significant.
4.A.3 Bivariate analyses of other variables
Demographic characteristics of parents/caregivers and private insurance
Table 21 shows the association between some demographic characteristics of parents and
having private insurance. It can be seen when parents/caregivers were older than 34, they
were 6.6 times more likely to have private insurance and this was statistically significant
(P-value=0.043). Also when the level of education was more than high school, it was 7.7
times more likely that parents/caregivers had private insurance and this result was
statistically significant (P-value=0.01). Also being married increased the odds of having
private insurance (OR= 2) but the result was not statistically significant.
38
Government insurance and location of dental treatment
As can be see in Table 22, when the child had government insurance (ODSP, OW,
CINOT), the child was more likely (OR= 2.4) to have the dental treatment done in a
hospital compared to those who did not have such insurance but this finding was not
statistically significant (P =0.243). Also this table illustrates that when the child‟s ability
to speak was “not fluent/no word”, the child was three times more likely to have dental
work done in a hospital and this result was statistically significant (P =0.096). This table
shows that having private insurance was not associated with the location of the dental
treatment.
Private insurance and government insurance
Table 23 shows that when parents/caregivers did not have private insurance, the odds of
having government insurance increased up to 8 times (OR=1/0.12) and this finding was
statistically highly significant (P=0.002).
4.A.4 Multivariate analyses results (Logistic regression):
Logistic regression analyses were used to determine which baseline characteristics were
independent predictors or barriers to dental care for our population. Table 24 shows that
parents/caregivers were 3.7 (95% CI= 0.87-15.81) times more likely to have difficulties
finding a dentist when they were not married/other status (P =0.075). Also this table
explains that parents/caregivers were 10.4 times more likely to have difficulties finding a
dentist when their level of education was high school/less (P =0.043).
39
As can be seen in Table 25, parents/caregivers were significantly more likely (OR= 3.2)
to report that the child did not receive all needed dental treatment when the child„s oral
health was fair/poor (P =0.075). Also this table shows that the odds of receiving all
needed dental treatment decreased (OR=11, 95% CI= 0.96-125.30) when
parents/caregivers were 34 years old or younger. This result was statistically significant
(P =0.054).
Table.26 shows that when a child‟s general health was excellent/good, parents perceived
that the dentist and staff were more likely (OR= 3.6) not to have adequate knowledge of
ASD (P =0.133). This table also describes that when the child‟s first dental visit was after
age three, parents perceived that the dentist and staff were less likely to have adequate
knowledge of ASD and this finding was statistically significant at P ≤ 0.10.
4.A.5 Demographic characteristics of the population in the Geneva centre aged 5- 18
Table 27 shows some information provided by the Geneva Centre for Autism regarding
demographic characteristics of their population aged 5-18. Among all listed families in
the mailing address of the Geneva Centre about 1624 families had children aged 5-18
(Mean age = 10. 4, SD = 3.7). Half of the children were aged 5-10 and half were aged 11-
18. The majority of caregivers were mothers (81.3%) and most families lived in Toronto
(94.1%). The number of families who received the weekly parent Newsletter by email
was 1750 and their children were aged 2-18. The Geneva Centre could not estimate how
many of the families whose children were aged 5-18 were in the weekly parent
Newsletter list and received the invitation by email.
40
4.B Qualitative results:
Some participants elaborated on their answers to open-ended questions. Their responses
provide a better understanding of challenges faced by parents/caregivers in obtaining
dental care for their autistic children.
Type of phobia and sensory stimuli
Figure 7 and Appendix 5 illustrate the type of phobia that was reported by
parents/caregivers. Some of the children had more than one type of phobia, therefore the
results were not mutually exclusive. Forty seven percent of children with ASD had sound
phobias or sound sensitivity. Some of these sound phobias were: loud noises, unnatural
noises, certain music, thunderstorms, and unexpected noises.
Thirty six percent of this population had a phobia about a new environment or situation,
while 33% had touch phobia and sensitivity such as sensitivity to being touched on the
face and around the mouth. Thirteen percent of our study population were sensitive to
light for example, sun glare. Smell sensitivity was reported for 7% of the children.
Sensitivity to taste (4%) had the smallest percentage among all types of phobias and
sensory stimuli.
Type of reinforcement:
Figure 8 and Appendix 6 describe the type of reinforcements that provided positive
motivations for children in this study. Forty-four percent were motivated by fun/sport
activities. Some of these activities were: computers, toys, books, tickling, games, money,
41
movies, and stickers. Thirty-six percent of this study population were motivated by
praises. Also 36% of children were motivated by foods such as chips, cookies, yogurt,
candies, and gummy bears.
Parents’/caregivers’ opinion of why the dental treatment was not adequate:
Appendix 7 describes the parents‟ perceptions regarding the reasons why they believed
their children received inadequate dental care. As reported by parents/caregivers, a lack
of accommodations for a child with special needs in a dental office, being on a long
waiting list for dental treatment at the SickKids hospital, the high cost of non-insured
dental treatment (implant, orthodontic treatment, and general anesthetic) , and the parents‟
perception that the dental care providers did not have adequate knowledge of ASD were
some of the reasons why the child did not receive adequate dental care.
Who recommended the dentist to the parent/caregiver?
As can be seen in Appendix 8 parents/caregivers received recommendations and
information from different sources with regard to finding a dentist for their autistic child.
These sources were: family dentist, a pediatrician, the Geneva Centre, and Erin Oak (A
Children‟s Treatment centre in Peel Region). Searching through the internet was another
source of information for parents/caregivers. In a few cases, based on proximity,
parents/caregivers found the dentist themselves, without help.
42
Parents’/caregivers’ comments
Appendix 9 describes some comments that were made by parents/caregivers. These
comments can be categorized as follows:
Barriers to obtaining dental care
The cost of dental care for ASD children
Limited dental coverage provided by government insurance (ODSP, etc)
for advanced dental treatment such as orthodontics
Lack of compliance by autistic patients
Inappropriate attitudes of dental care providers
Positive experience
One of the positive experiences by one of the parents was in finding a dentist whose
background was that of an occupational therapist (OT), who had had experience working
on children with special needs. As described by the parent, through appropriate patient
management, that dentist was able to change the oral health habits of the child and could
even provide a variety of dental treatments for the child.
Public policy role
Information about government dental insurance such as ODSP should be
introduced to families
Increasing public and policy-makers‟ awareness of autism were thought to be
essential from the parents‟ perspective
43
Chapter V: Discussion
This descriptive study investigated access to dental care for a selected group of children
and adolescents with autism from the parents/caregivers‟ perspective. The results show
that most of the study population had access to dental care and that specific maternal
factors such as parents‟/caregiver‟s age and level of education had important impacts on
this access. The study was a small but representative sample of the population of the
Geneva Centre for autism in Toronto, which is the main government funded agency in
Toronto for the education of families with members who have an ASD. The Geneva
Centre provided information regarding the demographic characteristics of individuals
aged 5-18 who were in the mailing list data base. We found that the demographic
characteristics of our study population were very close to the demographic characteristics
of the population aged 5-18 in the Geneva Centre. We had a few participants whose
children were either 4 or 19 and they were also included in our analysis. We were not
sure how many of those on the mailing list were on the Newsletter list as well and
received our study invitation through the email. Also we cannot clarify how many
respondents were parents/caregivers who visited the Geneva Centre website but who
were not members of the Centre. The analyses were based on 70 participants of whom 62
completed the questionnaire. Over 80 percent of the children were male.
Our study showed that the ratio of male to female among the children was 4:1. This result
was similar to other studies10,18
. The parents‟/caregivers‟ reports of their child‟s oral
health in our study were: excellent/very good (20%), good (38%), and fair/poor (34.3%).
44
The results were worse than those of the National Survey in the US where 52% of autistic
children‟s teeth were rated as excellent/very good32
, while in our study only 20% were
classified as excellent/very good. Our population also fell behind when oral health status
was fair/poor when compared with the US study (34.3% vs. 18%, respectively) 32
. It
should be considered that we compared two studies that were different in their criteria
and methodology. Despite the fact that the oral health status of children in our study was
reported based on parents/caregivers‟ perceptions, it was in accordance with some studies
from the dental professionals‟ perspective. Studies from the dentists‟ perspective reported
that the oral health status of individuals with autism, specifically their caries prevalence,
is similar or even better than their counterparts in the typical population29,30,33
.
About 84% of participants in this study had dental insurance (private, government) to
cover their child‟s dental expenses which was similar to the US national study (80%) 32
.
Also, this finding was consistent with the result of Koneru‟s study (2009) that
investigated access to dental care for populations with developmental disabilities in
Ontario43
. However, a majority of our study population had private insurance in contrast
to her study population who had mostly government coverage 43
. One of the notable
results of our study was that the participants were highly educated, a result which was
similar to the US study32
. Previously, two Canadian studies reported that dental
insurance, level of education, and income markedly increased utilization of dental care
among Canadians 44,45
. This explains why 74% of children in our study had a regular
dental visit.
45
The present study showed that the most respondents resided in Toronto, a finding that
paralleled the finding in Koneru‟s study, and it could be a reason why this population had
better access to dental care compared to those who resided in rural areas43
.
Another significant finding of this study was that the child‟s first dental visit was at the
age three or before, as reported by almost half of parents/caregivers. Age one is the
suggested age for a child‟s first dental visit, as recommended by the American Academy
of Pediatric Dentistry46,47
. This high level of dental care awareness by parents/caregivers
in our study is not surprising considering their high educational attainment level.
One of the barriers perceived by parents to accessing dental care was the level of
knowledge of ASD among general dentists, dental specialists, and staff. As reported by
parents, 17.1% of general dentists and 40% of dental specialists did not have adequate
knowledge of ASD. It is not clear how the parents assessed the dental care providers‟
knowledge of ASD. Based on previous studies it can be interpreted that difficulties in
understanding this population could be a consequence of inadequate training regarding
the management of autistic dental patients.43,48
To answer this question more research
should be undertaken to investigate the dental providers‟ knowledge of patients with
ASD.
There were also some differences for accessing dental care between two age groups: 4-8
and 9-19. More children aged 4-8 were not cooperative during dental treatment compared
to children aged 9-19, and parents of the younger group experienced more difficulties
46
finding a dentist for their children. This finding can be expected as younger children are
often not cooperative because of their comprehension of instructions and expectations in
a new environment and as a result, dentists face more challenges treating these patients.
Aside from these differences, the main reason for the most recent dental visit was alike in
both groups, except for tooth extraction which was higher for those aged 9-19. Mixed
dentition and replacement of deciduous teeth by permanent teeth in children aged 9-19
could be a good reason that the older group experienced more tooth extraction.
In our study, bivariate analyses showed that the educational attainment level and marital
status of parents/caregivers were important factors in finding a dentist. The level of
education increased the odds of accessing a dentist up to nine times (Table 11) and this
result was statistically significant. Marital status increased the odds of this access but it
was not statistically significant; this could be a result of sample size. Also our analyses
showed that parents/caregivers with a level of education greater than high school were
7.7 times more likely to have private insurance and that, as shown in other studies, could
explain why a majority of our study population had access to dental care44,45
. Another
finding of bivariate analysis illustrates that being married doubled the odds of having
private insurance. Although this finding was not statistically significant, as a result of
small sample size, it gave us a better overview of why married parents/caregivers in our
study had better chance in accessing dental care for their autistic children.
In bivariate analysis, two predictors were found to be important with regard to how
parents perceived their children received dental care. One was the child‟s oral health
status and the other one was the age of the parents. Our study showed that poor oral
47
health decreased the odds of autistic children receiving all needed dental care. We might
easily predict that children and adolescents with poor oral health need more dental
treatment and perhaps more invasive dental procedures. Also children who are sensitive
to having their teeth brushed may have poor oral health as a result and these children
would also have difficulty receiving dental treatment. As our results show, parents faced
three times more difficulties finding a dentist when their child needed tooth extraction
(Table 20). Based on the elaborated answer of parents to this question of why they think
their child did not receive all needed dental treatment, not being cooperative during the
dental treatment was one of the common reasons. It can therefore be inferred that poor
oral health and secondary pain and discomfort in the oral area of these individuals likely
reduces their cooperation during extensive dental treatment and remains a barrier to
receiving all the necessary dental treatment.
The age of parents was another factor that hindered needed dental care. The bivariate
analysis explains that parents/caregivers younger than 34 were 11 times less likely to
perceive that their children received all needed dental care. As well as this finding, the
results show that parents/caregivers younger than 34 were almost 6 times less likely to
have private dental insurance that covered their child‟s dental care. On the other hand,
our analysis shows that having private insurance was not necessarily a predictor for
autistic children receiving all needed dental care. It should be emphasized that these
outcomes are a result of parents‟ perceptions and we are not sure on what scale they
answered this question. After reviewing parents‟ extended answers to this question, the
perceptions of not receiving all needed dental treatments for their child originated from
48
three sources: the cost of dental treatment not covered by insurance (general anaesthetic,
implant, etc), dentists‟ lack of adequate knowledge of ASD, and lack of cooperation by
the child during dental treatment. With respect to all of these factors we do not have an
explicit reason to explain why the age of parents made such a difference in their
perceptions but having dental insurance was likely one of the underlying factors.
The other outcome of this study was the parents‟ perception of the dentist‟s and staff‟s
knowledge of ASD. As shown in bivariate and multivariate analyses, the child‟s age at
the first dental visit and the general health status of a child were important predictors for
parents‟ perception of the dentists‟ knowledge of ASD. The analysis showed that parents
viewed that the dentist and staff were less likely to have an adequate knowledge about
ASD when the child‟s general health was good/excellent. Although this finding was
statistically significant, there is no apparent logical relation between a child‟s general
health and parents‟ perception of the dental care providers‟ knowledge of ASD. It could
also be confounded by other factors that were not measured in this study.
The present study shows that when the child‟s first dental visit was after age three,
parents perceived that the dentist and staff were less likely to know about ASD compared
to those aged three or younger. According to parents‟ responses, about 57% of children
got their ASD diagnosis after age three, and more than 50% had their first dental visit at
the age of three or before. With regard to these facts, we can suggest that for most
children younger than age three, neither parents nor dentists were aware of ASD at the
time of dental treatment and those children were just considered pediatric patients not
49
individuals with ASD. For children older than three, most of them already have had their
ASD diagnosis; therefore, at the time of dental treatment, the dentist and staff knew they
were providing care for an autistic patient. We can argue that because the result was
based on the parents‟ perceptions, certainly there was a difference in their judgment of
dental care providers‟ knowledge between those whose child had been diagnosed with
autism and those who had not at the time of their first dental visit.
After controlling for all variables in logistic regression, the results were consistent with
findings from bivariate analysis and all were statistically significant at P < 0.15 which
was our entry criteria used in logistic regression. For locating a dentist, marital status and
specifically the educational attainment of parents/caregivers were important variables.
For receiving all needed dental care, both the oral health status of child and the age of
parents/caregivers were important. Finally, the general health status of a child and the age
of a child at the time of his/her first dental visit were significant variables for parents‟
perception of dental care provider‟s knowledge of ASD.
Parents/caregivers in our study reported their child‟s phobias, sensory stimuli, fear of
dentists, and lack of cooperation were challenges they experienced during dental
treatment. The same findings were found in other studies7,12,13
. In the present study,
parents were four times more likely to have difficulties in finding a dentist when their
child had a phobia (Table 13). Although this finding was not statistically significant, it
still constitutes important information to consider in all children with ASD. Awareness of
50
these phobias can help dental care providers to understand a patient with ASD and can
ease patient management.
The results show that about 57% of the study population had unusual dental fear and
anxiety that was much higher than that reported in the review by Klingberg (9%)48
. This
may be explained by characteristics of this population such as: intellectual disability,
impairment in communication, non-functional routines and sensory sensitivity that make
a dental visit frightening and uncomfortable for them9-13
. Also our study indicates that the
older age group of children experienced dental fear and anxiety less than the younger age
group. The latter finding is consistent with the study by Klingberg that reported that the
prevalence of dental fear decreases with age. This can be explained by the fact that older
children in this study became more familiar with dental care over time and adapted
themselves to the dental environment.
Positive reinforcement to motivate an autistic child was another finding of this study
which supported Madina‟s study14
. This finding can be used as a patient management
strategy when dental care providers treat patients with ASD.
This study also provided other important information. We found that the children with
poor speech/no words were three times more likely to have their dental treatment in
hospital. The study also found that children with ASD and severe speech impairment
were less cooperative during dental treatment than those who spoke fluently (64% versus
25%, P = 0.002) and this finding could explain why dental treatment was carried out in a
51
hospital setting. Therefore it remains a challenge for dentists in private offices to provide
dental care for autistic patients who are non-verbal. This finding was reported in other
studies as well12,29
.
It has been reported that autistic individuals more often required general anesthetic for
their dental treatment than their counterparts in the general population33,34
.We know from
our study that in cases of emergency, where the type of dental treatment is unknown,
general anesthetic was used more often than any other forms of anesthetic such as
intravenous or local. However, we do not know how this compares to a healthy
population requiring the same type of dental treatment.
Most of the participants in the present study had private dental insurance and a few had
government coverage. Based on parents/caregivers‟ response, the majority of those with
government coverage received their dental treatment in a private office. We can infer that
government coverage was important for receiving dental care when private insurance was
not available. Among the responses, we noticed that a few parents/caregivers were
interested in knowing about government coverage. Thus, informing families of the option
of government coverage is likely important to some families.
Ninety percent of parents/caregivers in this study believed that oral health was an
important part of general health. Koneru reported the same finding: that most individuals
with disabilities in Ontario believed that oral health was an important part of general
52
health42
. This belief promotes caregivers to seek dental care for their dependents42
. We
can easily infer why the vast majority of our study population have regular dental visits.
This study provides an overall view of children with ASD and the challenges their
parents experienced accessing dental treatment. The results of this study were based on
the responses of a highly educated group of parents who mostly had private dental
insurance. We are uncertain how respondents from different socio-economic levels would
affect these results. The majority of parents had private insurance and half of those who
did not have private insurance had government coverage. The perspectives of those who
pay out of pocket remain uncertain and demands more research. Overall, this study
emphasizes the importance of maternal factors in accessing dental care for children and
adolescent with autism.
The other important aspect of this study was comprehensive information about the
general characteristics of the children, and the perceived attitudes of dental professionals
towards autistic patients, as provided by the parents‟ answers to the open-ended
questions. This information can help us to set up some recommendations and future
studies. In conclusion, our study indicates that though the majority of the study
population had access to dental care, there were still many challenges to receiving that
care.
53
5.1 Limitations of this study:
This study was a small sample of the population (1624 persons) aged 5-18 in the Geneva
Centre for Autism in Toronto. Although the demographic characteristics of our
population were similar to this age cohort in the Geneva Centre, it is not certain how
many were in the parent Newsletter email list and received the study invitation.
Apart from this, because this study was a web-based survey which was advertised by the
Geneva Centre on its website, it is hard to estimate the numbers of participants who were
not members of this centre but simply, during a visit to the Geneva Centre website,
participated in this study. The participants were not asked whether they were a member of
the Geneva Centre or not. Therefore we cannot determine the actual population from
which our sample was derived.
Our study instrument was a web-based questionnaire. To participate in this type of
survey, computer literacy was essential. Therefore the study was likely limited to
parents/caregivers who were self-confident about their computer skills and had access to
a computer and the internet. This limitation may explain two results of our study; first
why parents/caregivers who responded to the survey were mostly highly educated, and
second, why the study had a low response rate.
54
5.2 Implications and recommendations:
This study recognizes the need for further research into the prevalence of dental disease
among children and adolescents with ASD. Also based on our findings, some specific
recommendations for parents and dental care providers are offered, as follows:
5.2.1 Future research:
To have a better understanding of autistic dental patients, their dental needs, and to
provide dental care programs for them, we need to investigate their oral health and the
prevalence of dental disease among them. Future studies should investigate the oral
health of different populations of individuals with ASD such as dependent ones and
independent ones. Also a comparison should be made between this population and their
counterparts in the general population. Another important area for research is
investigating dental care professionals‟ attitudes and knowledge towards ASD. Such
research should provide better ways to establish educational programs for dental care
providers and should help us produce a directory of dentists who are experienced in
treatment of this population.
Collaboration among other health care professionals (developmental pediatricians,
psychologists, speech and language pathologists, etc), autism organizations, and dental
care professionals is essential if research is to result in the development of dental
educational materials for dental professionals, parents/caregivers, and even individuals
with ASD.
55
5.2.2 Recommendations for parents:
As parents reported, new environments are specially challenging for their autistic child.
Visiting a dental office and meeting new people can be frightening and stressful for this
population. Parents can familiarize their child with the dental environment by showing
them some pictures of a dental office and a dentist. The study by Bäckman proved that
visual pedagogy was effective in increasing the cooperation of autistic children during
dental treatment37
. Parents should discuss their child‟s sensory issues with the dentist in
advance.
5.2.3 Recommendations for dental care providers:
Dental care providers should know that parents of individuals with autism are the best
source of information. Providers need to listen to what parents have to say about their
child‟s interests and behaviours. For instance, using a standardized screening
questionnaire to obtain the child‟s sensory sensitivities or level of language prior to the
dental visit can help inform dental care providers and lead to the better management of
patients with autism. Some parents in our study reported that their child was extremely
sensitive to touch and some were extremely sensitive to touch around the face and mouth.
Children should be warned in advance about the use of instruments that are noisy. Dental
care providers can use visual aids such as pictures or a movie of dental procedures to help
these individuals to understand what to expect during dental treatment. Any procedure
should be done very smoothly and gently. Positive reinforcements can be very good
motivation for these individuals and each child will have unique preferences that parents
56
are usually aware of. Some of those reinforcements can be offered in dental offices as a
reward for the child‟s co-operative behaviour.
57
Chapter VI: Conclusion
The present study shows that the majority of our study population has access to dental
care. It should be remembered, however, that the study population were individuals with
autism whose parents/caregivers were highly educated and the majority of them had
private dental insurance. With regard to access, there were two important factors:
educational attainment level and marital status of parents/caregivers. Both of these were
statistically significant in bivariate and multivariate analyses. This study highlighted other
factors, such as poor oral health, and good general health in children, younger parental
age, and a child‟s age being more than 3 at the first dental visit were perceived to
diminish the quality and quantity of dental services received by autistic individuals.
Seventy-one percent of our study population had a regular dental visit and most had
dental insurance. However, the characteristics of these individuals and the attitudes of
dental care providers affected the quality of this access. The fact is that difficulties faced
by parents of children with ASD in accessing dental were related to family structure,
parents‟ education and their perception of dentists‟ knowledge of ASD.
58
Table 1. Characteristics of study population
Child’s Demographics
(n=70)
n % Mean (SD)
(Min-Max)
Sex
Female 13 18.6
Male 57 81.4
Age 9.8 (3.6)
(4-19)
School Attendance
Kindergarten 7 10.0
Elementary School 30 42.9
High School 8 11.4
Home Schooled 3 4.3
School (or classroom) for
children with special needs
18 25.7
Other 3 4.3
Missing 1 1.4
Resident of Toronto
Yes 57 81.4
No 5 7.1
Missing 8 11.4
Spoken Language at home
English 54 77.1
French 1 1.4
Other 7 10.0
Missing 8 11.4
59
Table 2. Characteristics of study population
Parent/caregiver’s Demographics
(n=70)
n %
Primary Caregiver
Mother 53 75.7
Father 9 12.9
Missing 8 11.4
Spends the most time with the child
Mother 53 75.7
Father 5 7.1
Grandparents 2 2.9
Babysitter/Caregiver 1 1.4
Child is institutionalized 0 0.0
Other 1 1.4
Missing 8 11.4
Age (yrs)
Between 25-34 6 8.6
Between 35-44 39 55.7
Older than 45 17 24.3
Missing 8 11.4
Marital Status
Married 46 65.7
Divorced/Separated 12 17.1
Widowed 1 1.4
Single 3 4.3
Missing 8 11.4
Level of Education
Less than high school 2 2.9
Completed high school 7 10.0
Completed college/technical school 19 27.1
Completed university 29 41.4
Other (postgraduate education) 5 7.1
Missing 8 11.4
Other children in the family
Yes 38 54.3
No 22 31.4
Missing 10 14.3
Other children with ASD in the family
Yes 5 7.1
No 57 81.4
Missing 8 11.4
60
Table 3. Child’s general health and access to health care
n %
Child’s general health
Excellent/Very good 33 47.1
Good 25 35.7
Fair 7 10.0
Poor 0 0.0
Missing 5 7.1
Child’s ability to speak
Fluent in sentences 40 57.1
3-4 word phrases 22 31.4
Single word 2 2.9
No words 1 1.4
Missing 5 7.1
Child has phobia
Yes 58 82.9
No 7 10.0
Missing 5 7.1
Positive reinforcement to motivate the child
Yes 59 84.3
No 6 8.6
System Missing 5 7.1
Age of diagnosis with ASD
Age 3 or before 22 31.4
After 3 but before 5 25 35.7
After age 5 15 21.4
Can not remember 3 4.3
Missing 5 7.1
Type of medical insurance
Public (OHIP) 24 34.3
Private 5 7.1
Both 36 51.4
None 1 1.4
Missing 4 5.7
61
Table 4. Child’s oral hygiene habits
n %
Brush more than 10 seconds
Yes 42 60.0
No 23 32.9
Missing 5 7.1
Permit to brush
Yes 40 57.1
No 8 11.4
Rarely 17 24.3
Missing 5 7.1
Frequency of daily tooth brushing
Three times or more 2 2.9
Twice 27 38.6
Once 26 37.1
Less than once 10 14.3
None 0 0.0
Missing 5 7.1
Use an electronic/power tooth brush
Yes 23 32.9
No 31 44.3
Sometimes 11 15.7
Missing 5 7.1
62
Table 5. Child’s dental history
n %
First dental visit
0-1 year of age 3 4.3
2 years of age 11 15.7
3 years of age 20 28.6
4 years of age 6 8.6
5 years but less than 6 18 25.7
Never 2 2.9
Missing 10 14.3
Toothache in the past 12 months
Yes 16 22.9
No 48 68.6
Missing 6 8.6
Filling in the past 12 months
Yes 25 35.7
No 39 55.7
Missing 6 8.6
Tooth extraction in the past 12 months
Yes 9 12.9
No 53 75.7
Missing 8 11.4
Self-injury in the mouth
Yes 5 7.1
No 59 84.3
Missing 6 8.6
Dental emergency
Yes 4 5.7
No 57 81.4
Missing 9 12.9
Type of anaesthetic
Local anesthetic 4 5.7
General anesthetic 10 14.3
Intravenous sedation 5 7.1
Premedication 0 0.0
None 12 17.1
Missing 39 55.7
63
Table 6. Parent/Guardian’s perception of child’s oral health n %
Child’s oral health
Excellent/Very good 14 20.0
Good 26 37.1
Fair 17 24.3
Poor 7 10.0
Missing 6 8.6
Oral health is important
Yes 63 90.0
No 1 1.4
Don‟t know 0 0.0
Missing 6 8.6
64
Table 7.1. Access to dental care and provider’s attitude/knowledge of
autism
n %
Have a regular dental visit
Yes 50 71.4
No 12 17.1
Missing 8 11.4
Who recommended the dentist?
Other parents who have child with ASD 7 10.0
The social worker who helps to get services 4 5.7
The dentist is the family‟s dentist 21 30.0
Friends or other relatives 5 7.1
Other sources 18 25.7
Missing 15 21.4
Place to get the dental treatment
Hospital 13 18.6
Private dental office 49 70.0
Other places 1 1.4
Missing 7 10.0
Difficulty locating a dentist in private office
Yes 21 30.0
No 30 42.9
Missing 19 27.1
Difficulty with transportation
Yes 4 5.7
No 59 84.3
Missing 7 10.0
The child’s last dental visit
Never had a dental visit 2 2.9
Less than one year ago 53 75.7
One year to less than 2 years ago 5 7.1
More than 2 years ago 3 4.3
Missing 7 10.0
Main reason for the last dental visit
Regular check up 24 34.3
Cleaning 13 18.6
Filling 8 11.4
Gum problem 1 1.4
Tooth extraction/surgery 5 7.1
Toothache 1 1.1
Other reasons 9 12.9
Missing 9 12.9
65
Table 7.2. Access to dental care and provider’s attitude/knowledge of autism
(Cont’d)
n %
Received all needed dental treatment
Yes 44 62.9
No 15 21.4
Missing 11 15.7
Received adequate dental treatment
Yes 45 64.3
No 15 21.4
Missing 10 14.3
Any problem during the dental treatment
Yes 23 32.9
No 37 52.9
Missing 10 14.3
Unusual fear of the dental visit
Yes 40 57.1
No 22 31.4
Missing 8 11.4
Parents perceived that the dentist and staff had adequate knowledge
of ASD
Yes 18 25.7
Yes, but it was still difficult 15 21.4
Somewhat 15 21.4
No 12 17.1
Missing 10 14.3
Dental specialist visit
Yes 23 32.9
No 37 52.9
Missing 10 14.3
Parents perceived that the specialist and staff had adequate
knowledge of ASD
Yes 15 21.4
Yes, but it was still difficult 11 15.7
Somewhat 6 8.6
No 28 40.0
Missing 10 14.3
66
* ODSP: Ontario Disability Support Program
** OW: Ontario Works
*** CINOT: Children In Need Of Treatment
Table 8. Dental Insurance
n %
Having private insurance
Yes 45 64.3
No 18 25.7
Missing 7 10.0
Having government insurance
Yes, ODSP* 12 17.1
Yes, OW** 2 2.9
Yes, CINOT*** 0 0.0
Yes, other 0 0.0
NO 49 70.0
Missing 7 10.0
67
Table 9. Barriers to dental care
n %
Could not afford dental treatment
Yes 15 21.4
No 48 68.6
Missing 7 10.0
Difficult to find a dentist who knows about ASD
Yes 26 37.1
No 44 62.9
Missing - -
Difficult to find a dentist who spend time to get the child’s trust
Yes 16 22.9
No 54 77.1
Missing - -
Difficult to meet the costs of dental treatment
Yes 17 24.3
No 53 75.7
Missing - -
Too busy to take the child to the dentist
Yes 2 2.9
No 68 97.1
Missing - -
Difficult to find somebody to look after other children
Yes 3 4.3
No 67 95.7
Missing - -
Child has fear of dentist
Yes 20 28.6
No 50 71.4
Missing - -
Child is not cooperative
Yes 26 37.1
No 44 62.9
Missing - -
68
Table 10
Bivariate analyses of variables associated with access to dental care for children and
adolescents with autism (ASD)
Child’s demographic characteristics
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Child’s age
4-8 yrs 26 46.2 (12) 53.8 (14) 33 69.7 (23) 30.3 (10) 33 33.3 (11) 66.7 (22)
9-19 yrs 25 36.0 (9) 64.0 (16) 26 80.8 (21) 19.2 (5) 27 25.9 (7) 74.1 (20)
OR (95% CI) 1.52 (0.5-4.7) 0.55 (0.2-1.9) 0.7 (0.2-2.1)
P-value 0.461 0.332 0.533
OR=Odds Ratio
CI=Confidence Interval
69
Table 11
Bivariate analyses of variables associated with access to dental care for children and
adolescents with autism (ASD)
Parent’s/caregiver’s demographic characteristics (1)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Marital
status
Not married /
other
situation
11 63.6 (7) 36.4 (4) 16 62.5 (10) 37.5 (6) 16 18.8(3) 81.2 (13)
Married 39 35.9 (14) 64.1 (25) 42 78.6 (33) 21.4 (9) 43 34.9 (15) 65.1 (28)
OR (95% CI) 3.12 (0.8-12.6) 0.45 (0.1-1.6) 2.32 (0.6-9.4)
P-value *0.166 *0.314 *0.343
Level of
education
High school
or less
6 83.3 (5) 16.7 (1) 8 75.0 (6) 25.0 (2) 8 37.5 (3) 62.5 (5)
More than
high school
44 36.4 (16) 63.6 (28) 50 74.0 (37) 26.0 (13) 51 29.4 (15) 70.6 (36)
OR (95% CI) 8.75 (0.9-81.6) 1.05 (0.2-5.9) 1.44 (0.3-6.8)
P-value *0.07 *1 *0.69
* Fisher’s exact test, otherwise p-value from Chi-square test
70
Table 12
Bivariate analyses of variables associated with access to dental care for children and
adolescents with autism (ASD)
Parent’s/caregiver’s demographic characteristics (2)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
More
children
No 19 26.3 (5) 73.7 (14) 21 81.0 (17) 19.0 (4) 21 19.0 (4) 81.0 (17)
yes 31 51.6 (16) 48.4 (15) 35 71.4 (25) 28.6 (10) 36 36.1 (13) 63.9 (23)
OR (95% CI) 0.33 (0.1-1.1) 1.7 (0.4 -6.3) 0.42 (0.1-1.5)
P-value 0.079 0.426 0.174
Other child
with ASD
No 47 42.6 (20) 57.4 (27) 55 74.5 (41) 25.5 (14) 55 29.1 (16) 70.9 (39)
yes 3 33.3 (1) 66.7 (2) 3 66.7 (2) 33.3 (15) 4 50.0 (2) 50.0 (2)
OR (95% CI) 1.48(0.1-17.5) 1.46 (0.1-17.4) 0.41 (0.05-3.2)
P-value *1 *1 *0.578
* Fisher exact test, otherwise p-value from Chi-square test
71
Table 13
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Parent/caregiver’s demographic characteristics 3
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Age≤ 34 VS
Age˃35
34 or younger 4 50.0 (2) 50.0 (2) 4 25.0 (1) 75.0 (3) 4 0 100.0 (4)
Older than 34 46 41.3 (19) 58.7 (27) 54 77.8 (42) 22.2 (12) 55 32.7 (18) 67.3 (37)
OR (95% CI) 1.42 (0.2-11.0) 0.09 (0.01-1.0) 1.49 (1.2-1.8)
P-value *1 *0.049 *0.303
Age 35-44 VS
Other ages
Age 35-44 32 46.9 (15) 53.1 (17) 38 78.9 (30) 21.1 (8) 38 34.2 (13) 65.8 (25)
Other ages 18 33.3 (6) 66.7 (12) 20 65.0 (13) 35.0 (7) 21 23.8 (5) 76.2 (16)
OR (95% CI) 1.76 (0.5-5.9) 2.01 (0.6-6.7) 0.60 (0.2-2.0)
P-value 0.352 0.249 0.406
Age˃45 VS
Age˂45 younger than
45
36 47.2 (17) 52.8 (19) 42 73.8 (31) 26.2 (11) 42 31.0 (13) 69.0 (29)
Older than 45 14 28.6 (4) 71.4 (10) 16 75.0 (12) 25.0 (4) 17 29.4 (5) 70.6 (12)
OR (95% CI) 2.23 (0.6-8.5) 0.93 (0.2-3.5) 1.07 (0.3-3.7)
P-value 0.23 *1 0.907
* Fisher exact test, otherwise p-value from Chi-square test
72
Table 14
Bivariate analyses of variables associated with access to dental care for children and
adolescents with autism (ASD)
Child general health and access to health care (1)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Child general
health
Excellent/good 46 39.1 (18) 60.9 (28) 52 75.0 (39) 25.0 (13) 53 26.4 (14) 73.6 (39)
Fair/poor 5 60.0 (3) 40.0 (2) 7 71.4 (5) 28.6 (2) 7 57.1 (4) 42.9 (3)
OR (95% CI) 0.43 (0.06-2.8) 0.83 (0.1 -4.8) 0.27 (0.05-1.3)
P-value *0.637 *1 *0.182
Ability to
speak
Not fluent or
No word
17 52.9 (9) 47.1 (8) 23 65.2 (15) 34.8 (8) 37 30.4 (7) 69.6 (16)
Fluent 34 35.3 (12) 64.7 (22) 36 80.6 (29) 19.4 (7) 23 29.7 (11) 70.3 (26)
OR (95% CI) 2.06 (0.6-6.7) 0.45 (0.1-1.5) 1.0 (0.3-3.2)
P-value 0.227 0.187 0.954
* Fisher’s exact test, otherwise p-value from Chi-square test
73
Table 15
Bivariate analyses of variables associated with access to dental care for children and
adolescents with autism (ASD)
Child general health and access to health care (2)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Phobia
Yes 45 44.4 (20) 55.6 (25) 52 71.2 (37) 28.8 (15) 53 30.2 (16) 69.8 (37)
No 6 16.7 (1) 83.3 (5) 7 100.0 (7) 0 7 28.6 (2) 71.4 (5)
OR (95% CI) 0.25 (0.03-2.3) 0.71 (0.59-0.86) 1.08 (0.19-6.17)
P-value *0.381 *0.174 *1
Age of
diagnosis
with ASD
Age 3 or
before
16 31.2 (5) 68.8 (11) 20 75.0 (15) 25.0 (5) 20 70.0 (14) 30.0 (6)
After age 3 35 45.7 (16) 54.3 (19) 39 74.4 (29) 25.6 (10) 40 70.0 (28) 30.0 (12)
OR (95% CI) 0.54 (0.15-1.88) 1.03 (0.29-3.58) 1.0 (0.31-3.23)
P-value 0.33 0.957 1
* Fisher’s exact test, otherwise p-value from Chi-square test
74
Table 16
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Child's oral hygiene habits (1)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Brush more than 10 second
Yes 35 40.0 (14) 60.0 (21) 37 81.1 (30) 18.9 (7) 38 34.2 (13) 65.8 (25)
No 16 43.8 (7) 56.2 (9) 22 63.6 (14) 36.4 (8) 22 22.7 (5) 77.3 (17)
OR (95% CI) 0.86 (0.2-2.8) 2.44 (0.7-8.1) 0.57 (0.2-1.9)
P-value 0.801 0.137 0.35
permit to
brush
No or rarely 19 47.4 (9) 52.6 (10) 23 73.9 (17) 26.1 (6) 23 21.7 (5) 78.3 (18)
Yes 32 37.5 (12) 62.5 (20) 36 75.0 (27) 25.0 (9) 37 35.1 (13) 64.9 (24)
OR (95% CI) 1.5 (0.5-4.7) 0.94 (0.3-3.1) 0.5 (0.1-1.7)
P-value 0.489 0.925 0.271
75
Table 17
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Child's oral hygiene habits (2)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Frequency of
brushing (daily)
Once or less 28 32.1 (9) 67.9 (19) 34 79.4 (27) 20.6 (7) 34 32.4 (11) 67.6 (23)
Two or more 23 52.2 (12) 47.8 (11) 25 68.0 (17) 32.0 (8) 26 26.9 (7) 73.1 (19)
OR (95% CI) 0.4 (0.1-1.3) 1.8 (0.5-5.9) 0.8 (0.2-2.4)
P-value 0.148 0.32 0.649
Using electric tooth brush
No 24 33.3 (8) 66.7 (16) 28 67.9 (19) 32.1 (9) 28 25.0 (7) 75.0 (21)
Yes or sometimes 27 48.1 (13) 51.9 (14) 31 80.6 (25) 19.4 (6) 32 34.4 (11) 65.6 (21)
OR (95% CI) 0.5 (0.2-1.7) 0.5 (0.1-1.7) 0.6 (0.2-1.9)
P-value 0.283 0.26 0.429
Private
insurance
Yes 37 43.2 (16) 56.8 (21) 43 72.1 (31) 27.9 (12) 44 36.4 (16) 63.6 (28)
No 14 35.7 (5) 64.3 (9) 16 81.2 (13) 18.8 (3) 16 12.5 (2) 87.5 (14)
OR (95% CI) 1.3 (0.38-4.89) 0.59 (0.14-2.47) 4.0 (0.80-19.89)
P-value 0.626 0.738 0.112
76
Table 18
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Parent/guardian's perception of child's oral health and child's dental history (1)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Child's oral
health
Fair or poor 18 50.0 (9) 50.0 (9) 23 60.9 (14) 39.1 (9) 23 26.1 (6) 73.9 (17)
Excellent or
good
33 36.4 (12) 63.6 (21) 36 83.3 (30) 16.7 (6) 37 32.4 (12) 67.6 (25)
OR (95% CI) 1.75 (0.5-5.6) 0.31 (0.1-1.0) 0.73 (0.2-2.3)
P-value 0.344 0.53 0.602
Child's first
dental visit
After age 3 or
never
19 31.6 (6) 68.4 (13) 24 83.3 (20) 16.7 (4) 24 16.7 (4) 83.3 (20)
Age 3 or before 27 40.7 (11) 59.3 (16) 14 69.7 (23) 30.3 (10) 34 38.2 (13) 61.8 (21)
OR (95% CI) 0.67 (0.2-2.3) 2.17 (0.6-8.0) 0.3 (0.1-1.1)
P-value 0.526 0.238 0.076
Main reason
for last dental
visit
Regular check
up or cleaning
31 38.7 (12) 61.3 (19) 36 69.4 (25) 30.6 (11) 37 35.1 (13) 64.9 (24)
Other dental
work
18 44.4 (8) 55.6 (10) 23 82.6 (19) 17.4 (4) 23 21.7 (5) 78.3 (18)
OR (95% CI) 0.79 (0.2-2.6) 0.49 (0.1-1.7) 1.9 (0.6-6.5)
P-value 0.694 0.257 0.271
77
Table 19
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Parent/guardian's perception of child's oral health and child's dental history (2)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Tooth ache in the past 12
months
Yes 12 66.7 (8) 33.3 (4) 15 66.7 (10) 33.3 (5) 15 26.7 (4) 73.3 (11)
No 39 33.3 (13) 66.7 (26) 44 77.3 (34) 22.7 (10) 45 31.1 (14) 68.9 (31)
OR (95% CI) 4.0 (1.0-15.8) 0.59 (0.2-2.1) 1.24 (0.3-4.6)
P-value 0.051 0.497 1
Dental
emergency in
the past 12
months
Yes 2 50.0 (1) 50.0 (1) 4 75.0 (3) 25.0 (1) 4 50.0 (2) 50.0 (2)
No 47 40.4 (19) 59.6 (28) 54 74.1 (40) 25.9 (14) 55 27.3 (15) 72.7 (40)
OR (95% CI) 1.47 (0.1-25.0) 1.05 (0.1-11) 0.37 (0.05-3)
P-value 1 *1 *0.571
* Fisher’s exact test, otherwise p-value from Chi-square test
78
Table 20
Bivariate analyses of variables associated with access to dental care for children and adolescents
with autism (ASD)
Parent/guardian's perception of child's oral health and child's dental history (3)
Difficulty finding a dentist in
private office
Received all needed dental
treatment
Parents perceived that the
dentist and staff had adequate
knowledge of ASD
N Yes No N Yes No N Yes No/Not
enough
% ( n) % (n) % (n) % (n) % (n) % (n)
Tooth filling in
the past 12
months
Yes 20 55.0 (11) 45.0 (9) 23 82.6 (19) 17.4 (4) 23 26.1 (6) 73.9 (17)
No 31 32.3 (10) 67.7 (21) 36 69.4 (25) 30.6 (11) 37 32.4 (12) 67.6 (25)
OR (95% CI) 2.57 (1.0-8.2) 2.09 (0.6-7.6) 0.73 (0.2-2.3)
P-value 0.107 0.257 0.602
Tooth
extraction in
the past 12
months
Yes 6 66.7 (4) 33.3 (2) 8 100.0 (8) 0 8 12.5 (1) 87.5 (7)
No 44 38.6 (17) 61.4 (27) 51 70.6 (36) 29.4 (15) 52 32.7 (17) 67.3 (35)
OR (95% CI) 3.18 (0.5-19.3) 1.41 (1.2-1.7) 0.29 (0.03-2.6)
P-value *0.223 *1 0.415
Self injury in
the mouth
Yes 5 40.0 (2) 60.0 (3) 5 100.0 (5) 0 5 20.0 (1) 80.0 (4)
No 46 41.3 (19) 58.7 (27) 54 72.2 (39) 27.8 (15) 55 30.9 (17) 69.1 (38)
OR (95% CI) 0.95 (0.1-6.2) 1.38 (1.2-1.6) 0.56 (0.6-5.4)
P-value *1 *0.315 *1
* Fisher’s exact test, otherwise p-value from Chi-square test
79
Table 21
Parent/caregiver’s demographic characteristics and having private
insurance
Having private insurance
N Yes No
% ( n) % (n)
Age≤ 34 VS Age˃35
Older than 34 56 76.8 (43) 23.2 (13)
34 or younger 6 33.3 (2) 66.7 (4)
OR (95% CI) 6.62 (1.1-40.3)
P-value *.043
Level of education
High school or less 9 33.3 (3) 66.7 (6)
More than high school 53 79.2 (42) 20.8 (11)
OR (95% CI) 0.13 (0.03-0.61)
P-value *0.01
Marital status
Married 46 76.1 (35) 23.9 (11)
Not married/Other status 16 62.5 (10) 37.5 (6)
OR (95% CI) 2.0 (0.6-6.4)
P-value 0.338
* Fisher’s exact test, otherwise p-value from Chi-square test
80
Table 22
Bivariate analyses of variables associated with access to dental care for
children and adolescents with autism (ASD)
Location of dental treatment
N Hospital Private office or
other locations
% ( n) % (n)
Having government
insurance
(ODSP/OW/CINOT/Other)
Yes 14 28.6 (4) 71.4 (10)
No 49 14.3 (7) 85.7 (42)
OR (95% CI) 2.4 (0.6-9.8)
P-value *.243
Child's ability of speaking
Not fluent/No word 25 28.0 (7) 72.0 (18)
Fluent 38 10.5 (4) 89.5 (34)
OR (95% CI) 3.3 (0.8-12.8)
P-value *0.096
Private insurance
Yes 45 17.8 (8) 82.2 (37)
No 18 16.7 (3) 83.3 (15)
OR (95% CI) 1.1 (0.2-4.6)
P-value *1.00
* Fisher’s exact test, otherwise p-value from Chi-square test
81
Table 23
Bivariate analyses of variables associated with access to dental
care for children and adolescents with autism (ASD)
Government insurance
(ODSP/OW/CINOT/Other)
N Yes No
% ( n) % (n)
Private insurance
Yes 45 11.1(5) 88.9 (40)
No 18 50.0 (9) 50.0 (9)
OR (95% CI) 0.12 (0.03-0.5)
P-value *.002
* Fisher’s exact test, otherwise p-value from Chi-square test
82
Table 24
Logistic regression model predicting difficulty locating a dentist
*OR *P-value 95% CI
Not married/other VS
Married
3.7 0.075 0.87-15.81
High school or less VS
More than high school
10.4 0.043 1.07-101.35
*OR = Odd ratio
*CI = Confidence interval
83
Table 25
Logistic regression model predicting not receiving needed dental care
*OR *P-value 95% CI
Fair or poor oral health VS
Excellent or good oral health
3.2 0.075 0.89-11.5
Parent aged ≤ 34 VS Parent
aged ˃ 35
11 0.054 0.96-125.30
*OR = Odd ratio
*CI = Confidence interval
84
Table 26
Logistic regression model predicting of parents’ perception that the
dentist and staff not having adequate knowledge about ASD
*OR *P-value 95% CI
Excellent or good health VS
Fair or poor health
3.6 0.133 0.69-19.18
Age˃ 3 VS Age ≤ 3
(First dental visit)
2.94 0.104 0.80-10.82
*OR = Odd ratio
*CI = Confidence interval
85
Table 27. Characteristics of the Geneva Centre population aged 5-18
N= 1624
n % Mean (SD)
(Min-Max)
Age of the child 10.4 (3.7)
(5-18)
Child aged 5-10 834 50
Child aged 11-18 790 50
Resident of Toronto
Yes 1528 94.1
No 94 5.8
Missing System 2 0.1
Relationship to the child
Mother 1320 81.3
Father 276 17.0
Other 19 1.2
Missing 9 0.6
86
Figure 1: Access to Dental Care & Treatment Experience (%)
(N=70)
71
70
57
33
30
21
21
16
6
0 10 20 30 40 50 60 70 80 90 100
Regularly visit a
dentist
Dental Tx private
office
Fear during dental
care
Problem during dental
treatment
Difficulty finding a
dentist
Not received adequate
dental care
Not received all
needed Tx
Dental Tx in hospital
Transportation
difficulty
87
37
37
29
24
23
4
3
0 10 20 30 40 50 60 70 80 90 100
Difficult to find a dentist who undrestands the
child's condition
The child is not cooperative during dental
treatment
The child is afraid of the dentist
Difficult to meet the cost of the child's detal
treatment
Difficult to find a dentist who spends time to
gain the child's trust
Difficult to find somebody to take care of other
children during dental treatment
Too busy to take the child to the dentist
Figure 2: Barriers to Dental Care (%)
N=70
88
Figure 3: Access to Dental Care & Treatment Experience (%)
4-8 yrs VS 9-19 yrs
76
76
62
36
37
19
26
17
85
79
67
46
39
30
24
21
0 10 20 30 40 50 60 70 80 90 100
Regularly visit a
dentist
Dental Tx private
office
Fear during dental
care
Difficulty finding a
dentist
Problem during dental
treatment
Not received all
needed Tx
Not received adequate
dental care
Dental Tx in hospital
4-8 yrs
9-19 yrs
89
23
34
34
34
29
6
3
51
40
23
14
17
3
3
0 10 20 30 40 50 60 70 80 90 100
Difficult to find a dentist who undrestands the
child's condition
The child is not cooperative during dental
treatment
The child is afraid of the dentist
Difficult to meet the cost of the child's detal
work
Difficult to find a dentist who spends time to
gain the child's trust
Difficult to find somebody to take care of
other children during dental treatment
Too busy to take the child to the dentist
4-8 yrs
9-19 yrs
Figure 4: Barriers to Dental Care (%)
4-8 yrs VS 9-19 yrs
90
Figure 5: The child last dental visit (%), 4-8 yrs VS 9-19 yrs
79
107
3
88
63 3
0
20
40
60
80
100
Less than one year One year to less
than 2 years
More than 2 years
ago
Child has never
been to a dentist
Age 9-19
Age 4-8
91
Figure.6: Main reason for last dental visit (%), 4-8 yrs VS 9-19 yrs
39
21
7
14
14
4
0
39
21
21
12
3
0
3
0 10 20 30 40 50 60 70 80 90 100
Regular check up
Cleaning
Other reason
Filling
Tooth extraction/sugery
Toothache
Gum problem
4-8 yrs
9-19 yrs
92
Figure 7: Type of phobia (%)
47
36
33
13
7
4
0 10 20 30 40 50 60 70 80 90 100
Sound
New environment
Touch
Light
Smell
Taste
93
Figure 8: Type of reinforcement (%)
4436 36
0
10
20
30
40
50
60
70
80
90
100
Activity
(Fun/Sport)
Praise Food
(%)
94
Appendix 1
CONSENT FORM
Title of research project: ACCESS TO DENTAL CARE FOR CHILDREN AND
ADOLESCENTS WITH AUTISM
Investigators:
Dr. Banafsheh Abbasnezhad-Ghadi, Dr. Herenia P. Lawrence, Dr. Alvin Loh and Dr.
David Kenny
Background & Purpose of Research:
The above-named investigators at the Faculty of Dentistry at the University of Toronto
are interested in finding out about access to dental care and related problems experienced
by children and adolescents with autism. There are currently no data concerning the oral
heath and the provision of dental care for individuals with autism in Canada. However,
evidence from other countries suggests that people with autism often face problems
accessing dental services. We have developed a questionnaire designed to be completed
by parents/guardians of individuals with autism that examines the barriers to obtaining
oral health care. We would greatly appreciate your help with the study by completing the
online survey. We will be administering this questionnaire to all parents/guardians of
children and adolescents between the ages of 5 and 18 coming to the Geneva Centre for
Autism between November 2008 and March 2009. This research project is part of the
requirements for a Masters thesis.
If you agree to participate, what will be involved?
PARTICIPATION IS ENTIRELY VOLUNTARY. If you agree to participate, you will
be asked to complete a questionnaire about your child‟s autism and access to health and
dental care. If you have more than one child with autism, please complete the
questionnaire for the youngest child. The survey questionnaire will take approximately 15
minutes to complete and consists mainly of multiple choice questions. It includes sections
on: your child‟s age, sex, dental history, general health and oral hygiene habits, your
perception of your child‟s oral health, access to dental care and availability of family
dental insurance, as well as perceived barriers to obtaining dental services and some
information about yourself. A link to our survey questionnaire is posted on the Geneva
Centre for Autism‟s website and is also available via the Centre‟s Parent Network e-mail
newsletter. Our survey is intended to help in better understanding the problems parents
face in accessing dental care for their child with autism. We emphasize that there are no
“right” or “wrong” answers and this is not a test of your memory. Please answer the
questions to the best of your ability.
Risks involved in participating in this study
There are no risks involved in this study. Your participation in this study will not have
any effect on the services your child receives at the Geneva Center for Autism.
95
Benefits of being involved in this study
There are no direct benefits from taking part in this study; however, the study findings
may help to provide better access to dental care for individuals with autism in our
community.
Right to withdraw from this study
You are perfectly free to withdraw from this study at any time for as long as the survey is
posted on the website. Withdrawing from the study will in no way affect your child‟s
treatment or any services provided through the Geneva Center for Autism. Once you
complete the survey questionnaire, you will be given a confirmation code. In case you
wish to withdraw after having completed the survey, please contact us via telephone or e-
mail and give us your confirmation code and all of your information will be deleted from
the survey.
Confidentiality of study records
We assure you that all information gathered during this study will be kept completely
confidential. All data will be identified through a code number to conceal the identity of
the participants. Forms used in this study will be stored in a locked filing cabinet in a
room with limited access at the Faculty of Dentistry, University of Toronto. All electronic
data will be saved on the personal laptop computer of the Principal Investigator, with
password protected access. Only the Principal Investigator, Dr. Banafsheh Abbasnezhad-
Ghadi, and her supervisor, Dr. Herenia P. Lawrence, will have access to these forms and
to the electronic data. All study records will be maintained by the Principal Investigator
for a period of five years. All electronic data on the disk will be deleted and all hard
copies will be shredded thereafter.
How will you know the results of this research? The Geneva Centre for Autism will inform you of the results of the research through the
Centre‟s flyer “Education and Training for Parents”, the Parent Network email newsletter
as well as posting the results on its website.
Questions regarding the study
If you have any questions about this study, please contact the Principal Investigator, Dr.
Banafsheh Abbasnezhad-Ghadi, via e-mail at [email protected]
or via telephone (416-833-9100) or you may contact her supervisor, Dr. Herenia P.
Lawrence, via e-mail at [email protected] or via telephone (416-
979-4908 ext.1-4492).
You may want to print a copy of this consent form for your records or future reference.
Thank you very much for your participation in our study!
96
Appendix 2: Survey’s poster
97
Section 1: CHILD’S BACKGROUND
1) Date of Birth: ____/____/_____
dd mm yyyy
2) Sex
0. Female
1. Male
3) Does your child attend any of the following?
0. Day care
1. Preschool
2. Kindergarten
3. Elementary School
4. High School
5. Home schooled
6. School (or classroom) for children with special needs
7. Other, specify ___________________
Section 2: CHILD’S GENERAL HEALTH & ACCESS TO HEALTH CARE
4) In general, would you say the health of your child is:
1. Excellent / Very Good
2. Good
3. Fair
4. Poor
5) Considering what your child says spontaneously, how does your child usually
speak?
1. Child speaks fluently in sentences
2. Child speaks in 3-4 word phrases
3. Child uses single word
4. No words
6) Does your child have any phobias (for example, fear of new situations and
challenging behaviours) or certain sensory peculiarities (for example, sound,
light and/or touch sensitivities, specifically around the face and mouth)?
1. Yes, specify ________________________________________________________
0. No
ACCESS TO DENTAL CARE FOR CHILDREN
AND ADOLESCENTS WITH AUTISM
Appendix 3
ACCESS TO DENTAL CARE FOR CHILDREN
AND ADOLESCENTS WITH AUTISM
98
7) Is your child motivated by positive reinforcement (like praise, food, fun
activity)?
1. Yes, specify ________________________________________________________
0. No
8) At what age was your child diagnosed with Autism Spectrum Disorder (ASD)?
1. Age 3 or before
2. After age 3 but before age 5
3. After age 5 (Specify ______ )
4. Can‟t remember
9) What type of medical insurance coverage does your child have?
1. Public (OHIP)
2. Private
3. Both
0. None
Section 3: CHILD’S ORAL HYGIENE HABITS
10) Does your child brush his/her own teeth for more than 10 seconds?
1. Yes
0. No
11) Does your child permit you to brush his/her teeth?
2. Yes
1. Rarely
0. No
12) How many times a day does your child, or someone else, brush his/her teeth?
4. Three times or more
3. Twice
2. Once
1. Less than once
0. None
13) Does your child use an electric/power tooth brush or a special device for oral
hygiene?
2. Yes
1. Sometimes
0. No
99
Section 4: CHILD’S DENTAL HISTORY
14) When was your child’s first dental visit?
1. 0-1 year of age
2. 2 years of age
3. 3 years of age
4. 5 years of age but less than 6 years of age
5. Never
15) In the past 12 months, has your child had a toothache?
1. Yes
0. No
16) In the past 12 months, has your child received any fillings?
1. Yes
0. No
17) In the past 12 months, has your child had a tooth/teeth extracted?
1. Yes
0. No
18) In the past 12 months, has your child had any self-injury in her/his mouth?
1. Yes
0. No
19) Has your child ever had a dental emergency?
1. Yes
0. No (Go to Q21)
20) If so, was treatment performed with (circle more than one if necessary):
1. Local anaesthetic
2. General anaesthetic
3. Intravenous sedation
4. Premedication
0. None
Section 5: PARENT/GUARDIAN’S PERCEPTION OF CHILD’S ORAL HEALTH
21) In general, would you say the health of your child’s mouth is:
1. Excellent / Very Good
2. Good
3. Fair
4. Poor
100
22) Do you think oral health is an important part of overall health?
0. Yes
1. No
9. Don‟t know
Section 6: CHILD’S ACCESS TO DENTAL CARE & PROVIDER’S ATTITUDE /
KNOWLEDGE OF AUTISM
23) Does your child have a dentist he/she sees regularly?
0. Yes
1. No (Go to Q25)
24) Who recommended your child’s dentist?
1. Other parents who have child/children with autism
2. The social worker who helps me to get services or information for my child
3. The dentist is our family dentist
4. Friends or relatives
5. Other sources, specify __________________________________________
25) Where does your child usually get his/her dental work?
1. In hospital
2. In private dental office
3. Other, specify _________________________________________________
26) If private office, did you have difficulty locating a dentist to treat your child?
1. Yes
0. No
27) Are there any problems getting transportation to the dentist?
1. Yes, specify ___________________________________________________
0. No
28) About how long has it been since your child last visited a dentist? (Including all
types of dentists, such as orthodontics, oral surgeons, and all other dental
specialists, and dental hygienists.)
4. Child has never been to a dentist (Go to Q37)
3. Less than one year ago
2. One year to less than 2 years ago
1. More than 2 years ago
101
29) What was the main reason your child required dental care at his/her last visit?
1. Regular check up
2. Cleaning
3. To have tooth/teeth filled
4. Trouble with gums
5. To have tooth/teeth pulled or other surgery
6. Toothache
7. Some other reason, specify _______________________________________
30) Did your child receive all the dental care that he or she needed at this visit?
0. Yes
1. No
31) In your opinion, did your child receive adequate or inadequate care?
0. Adequate
1. Inadequate, specify _____________________________________________
32) Were there any problems during the dental treatment?
1. Yes, specify __________________________________________________
0. No
33) Did your child manifest unusual fear (or anxiety) of the dental visit?
1. Yes
0. No
34) In your opinion, did the dentist and staff have adequate knowledge of this type
of disability?
3. Yes
2. Yes, but it was still difficult
1. Somewhat
0. No
35) Have you ever made an appointment for your child to see a dental specialist?
0. Yes, Specify the dental specialist
1. No
36) In your opinion, did the dental specialist and staff have adequate knowledge of
this type of disability?
3. Yes
2. Yes, but it was still difficult
1. Somewhat
0. No
102
Section 7: DENTAL INSURANCE
37) Do you have private insurance that covers all or part of your child’s dental
expenses?
0. Yes
1. No
38) Do you have government insurance that covers all or part of your child’s dental
expenses?
4. Yes, Ontario Disability Support Program (ODSP)
3. Yes, welfare (Ontario Works)
2. Yes, Children in Need of Treatment (CINOT)
1. Yes, other, specify ____________________________________________
0. No (Go to Q 34 )
Section 8: BARRIERS TO DENTAL CARE
39) During the past 12 months, was there any time when your child needed dental
work done (including check-ups), but could not obtain it because you could not
afford it?
0. Yes
1. No
40) Have any of the following reason/s made it difficult for your child to receive
dental work? (Circle all that apply.)
0. No difficulties
1. Difficult to find a dentist who understands my child‟s condition
2. Difficult to find a dentist willing to spend time gaining my child‟s trust
3. Difficult to meet the costs of my child‟s dental work
4. I am too busy to take my child to the dentist
5. Difficult to find someone to take care of my other children
6. My child is afraid of the dentist
7. My child does not cooperate during dental treatment
8. I cannot take my child to the dentist because of transportation difficulties
9. Other, specify ________________________________
Section 9: PARENT/GUARDIAN’S BACKGROUND
41) What is your relationship to the child?
1. Mother
2. Father
3. Grandparent
4. Other relative
5. Foster parent
6. Babysitter / caregiver
7. Other, specify ____________________________
103
42) Who spends the most time with the child? 1. Mother
2. Father
3. Grandparent
4. Other relative
5. Foster parent
6. Babysitter / caregiver
7. Child is institutionalized
8. Other, specify _____________________________
43) How old are you?
1. Younger than 25
2. Between 25-34
3. Between 35-44
4. Older than 45
44) What is your marital status?
1. Married
2. Divorced/Separated
3. Common-law
4. Widowed
5. Single
45) What is the highest level of the child’s primary caregiver?
4. Less than high school
3. Completed high school
2. Completed college / technical school
1. Completed university
9. Other, specify
46) Do you have other children?
1. Yes (How many? _________)
0. No
47) Do you have other children with ASD?
1. Yes (How many? _________)
0. No
48) What language is spoken more often at home?
1. English
2. French
0. Other
49) Do you reside in the Greater Toronto Area (GTA*)?
1. Yes
0. No (Specify city of residence ______________)
104
*The GTA consists of the City of Toronto and four regional municipalities (Durham,
Halton, Peel and York).
THANK YOU for taking the time to answer our questionnaire!
Do you have any comments? If so, please write them in the box below.
105
Health Behaviour
Obtained Dental
Care
Predisposing
FactorsEnabling Factors Need Factors
Child Factors
Age
Sex
Race / Ethnicity
Residence
Dental Fear/Anxiety
Parent/Guardian
Factors
Age
Sex
Race / Ethnicity
Marital Status
Education
Number of Siblings
Health Care
SystemUsual Source of Care
Availability of
Services
Dental Insurance
Out-of-Pocket Costs
Transportation / Geography
Parent/Guardian Factors
Income
Family Support
Social Networks
Severity of
Condition
Sensory
Sensitivity
Communication
Ability
Cognitive Level
Use of
Medications
Dental Provider’s
Knowledge and
AttitudesBehaviour Management
of Autistic ChildKnowledge of Autism
Oral Health
Status
Clinical or as
Perceived by
Parent/Guardian
Oral Hygiene
Appendix 4
Conceptual model for the relationship between autism and access to dental
care for children and adolescents
106
Appendix 5
Categorized List of Qualitative Responses
Phobia and sensory stimuli around the face and mouth light and sound
Sound and touch
fear of new situations/people, sensory defensive to touch light & noise
Fear of new situations, loud noises.
smells, sounds, face and mouth
Too much sound, any change to existing routine
He take everything in his mouth, especially threads
new situations, light, touch sensitises around the face
Sound, touch sensitivities, Doctor, dentist
New situations for sure, disruption of routine. Serious touch, sound AND light sensitivities. Unless he's the one
MAKING the noise.
loud notices, fear of the unknown
loud & unnatural noises, glare of the sun, food texture, cinemas
Anxiety of new situations and sudden changes
severe anxiety and sensory issues around the face
sound sensitivity, touch sensitivity around mouth
fears - change of any sort, transitioning, new situations
sensitive to things touching his mouth, avoids mushy, soft substances
new situations, change, bright lights, loud noises
can be sensitive to sound and light
sounds, touch if doesn't know what to expect
When nervous can grab out at hair or face of other person
fear of loud noises, anxious about new situations
doesn't like teeth brushed, loud noises
fear of new situations, fear of injustice, fear of violence, sensory craving
touch sensitive’s
smell sensory
Dislikes having her head and inside her mouth touched, fear of unfamiliar places
No phobia per se...He always wants to see people's teeth....little obsession of his!
All of those mentioned above
He is scared of pain and is resistant to having his teeth/gums touched. He will tolerate for a limited time. Loud
situation and will wear ear muffs to mute sounds.
fear of change, sensitive to light and loud sound, high mouth sensitivity
moderate sensitivity to loud sounds
smell/taste of the tooth paste is to strong
tooth brushing sensitivity
afraid of the dark
Certain music and noises
sound, tastes, smells, touch
height anxiety to needles,
moving cars and bugs
touch, sound, foods, fear of a lot
sensitive to touch around face and mouth, new situations
New Situations, unfamiliar surroundings etc.
sensory peculiarities
thunderstorms, anxiety around dental work
sensory issues, anxiety, esp. in social situations, challenging behaviours
loud noises, new situations
fear of new situations, loud noises
many challenging behaviours, extreme oral sensitivity
fear of new situations, fear of needles, heightened sound sensitivities
afraid of some sounds, tactile sensitive
Unexpected noises, transitions, smells
107
Appendix 6
Categorized List of Qualitative Responses
Positive reinforcement to motivate the child
Praise, Food (chips, cookies), Fun activities (Barbie, computer)
praise, new toy
Not consistently, however.
food or fun activities or computer
Loves praise and a good run around the house with lots of tickles to certain spots
Food
cookie but not always
Cereal, yogurt
when he good work his teacher gives him little books because enjoy to read
Praise, hugs, high fives, favourite snacks
Only if it's something tangible that HE specifies. He's not motivated by random reinforcements.
praise & encouragement, fun activities
Privileges
food,activity,praise
fun activity-- but not enough to overcome sensitivity
TOYS
Food can work but it is on a per case basis
praise, surprise for reward
My son loves all those motivators.
rewards - food or sport activities
Did not work for dentist visits in the past
After dental visits we do something fun i.e. MacDonald
chocolate, candy, Nintendo DS
computer time
verbal praise, DVD and computer time rewards
books are a good motivator
Can be bribed for candy
He likes to hear he has done a good job.
Bubble Gum
Will usually cooperate if promise of activity
praise, candy, money
stickers/DSgameboy/special food choice e.g. Harvey’s
if I need him to focus sometimes I use food, or an activity as a reinforce
Candy
first and then' strategy
praise, fun activity
praises, stickers, gummy bears, computer time
Praise, food, and treats
promise of reward, use of humour
If he is not in an anxious or heightened emotional state
stickers
praise, chips, movies
candies, French fries, Tim bits, toys that spin, praise
He like verbal praises
108
Appendix 7
Categorized List of Qualitative Responses
Parent/caregiver's opinion of why the dental care wasn't adequate
He is still not comfortable
My son goes to sick kid’s dentistry and sees a different dentist each time. They don't do anything different to accommodate his special needs, in fact he was so traumatised last time from having 3
people holding him down and all the stopping acts starting that he threw up all over me (mom). They only clean his teeth with a regular tooth brush, so he has never had a proper cleaning. When I
inquired about sedating him they said he's too big for oral sedation. I hate going there, but I have no
idea where else to take him
My child will need implants for the 3 missing teeth - I'm not sure if OHIP will cover that
no oral exam yet possible because child has extreme aversion to dental chair and opening his mouth (esp. for a stranger) + no physician will prescribe sedation
since he lacks of a tooth
He required 2 cavities to be filled. Because they were his baby teeth, they suggested that they fall
out naturally rather than subjecting him to a negative experience.
My child requires anaesthesia for ALL dental work. Few dentists in Toronto are qualified to do this. The Hospital for Sick Children charges too much (insurance does not cover most of the cost) and the
staff are ignorant about children with autism. Also there is at least an 8 month waitlist for services.
They check the teeth if there is an issue, they do nothing except refer to sick kids.
Hygienist didn't teach him to brush and floss, doesn't know nor understand how to talk to an ASD kid
I paid the consult fee, but ended up cancelling the actual treatment when I found out the bill was not covered.
the dentist did not have the patience to deal with my son, as he was crying, due to high anxiety and
he would not calm down, and the dentist just stated that he needs to go to a special office, that cost a lot more $ and my benefits, will not cover the extra appointments they are requesting.
Dentist just checked his mouth, and that suggested that we need to brush his teeth. He then said,
see you in 6 months.
Dentist was not sensitive to child's diagnosis of Autism.
Treatment at Hospital for Sick Children as my son needs to be asleep for dental work. Had difficulty
accessing service and have been unable to since, so my son has not had a cleaning, filling,
treatment etc since 1998. He is in need of treatment but unless we were in a shelter or could pay out of pocket we cannot access services. Tooth brushing at home is extremely difficult (although it is
slowly getting better) and requires at least 2 adults; however, I am a single Mom. His oral health has suffered greatly.
109
Appendix 8
Categorized List of Qualitative Responses
Who recommended your child's dentist?
it is the dentistry clinic in neighbourhood
Sick Kids
my family dentist recommended a paediatric dentist
Went through Bloor view
Geneva Center inside was a poster
I don't recall.
I found her across from where we live - she happens to be a paediatric dentist
We picked her based on proximity
Paediatrician referred us to Sick Kids Hospital
Family Dentist recommended Paediatric Dentist
Geneva parent network
her sister's Paediatrician
Bloor view Macmillian for basic check-ups and cleaning.
Family Doctor
I believe she was on a list given to me by Erin Oak
First checkups were at a children's dentist, found by searching the internet.
Called different dentists to find out if they will work with children with ASD
our family dentist
sees 2 dentists
u of t dentistry
Our dentist referred us to a specialist
110
Appendix 9
Categorized List of Qualitative Responses
Open comments
Our son resisted tooth brushing for many years. Had a very difficult time accessing care through Sick Kids where some work was done but there's no consistency of care. Now has a great paediatric dentist and pretty
good oral hygiene but still has swollen gums. He has had about $12000 worth of dental work in 11 years.
My son has Aspersers’ Syndrome and along with it many mild to severe behavioural challenges, but he can make the conscious decision to behave if he wants to. The dentist's office is one environment where he has
decided to behave properly. He is always the perfect patient, sits nicely in the chair; there has never been a problem in this environment.
#7 questions I think you should have more options to check off not just 1 or other.
So far my son has gone to the dentist for teeth cleaning and pulling the teeth out. I am concerned that if he
requires dental work such as filling or braces etc, would ODSP cover them??
Whatever helps create more awareness and understanding you can count me in.
I'm interested to know about government funding for special needs children where dental costs are concerned,
as one of your questions had a series of choices of govt funding which I am not aware of.
Finding appropriate dental care for my son in the Toronto Region took me years. It's almost impossible to find
anyone that can/will take the time privately to take on his special needs.
Dentists willing to work with children who have severe reactions to someone looking in their mouth and someone who will take the time necessary are extremely difficult to find. Many offices refuse to even attempt it.
We started out getting braces, and while he could tolerate the palate spreader and to some degree the braces to straighten the teeth, he was non compliant with head gear to reduce overbite. In the end we discontinued
treatment, partially due to non compliance and partially due to the attitude of the orthodontist.
It would be an absolute blast to have dental clinics specializing in taking care of autistic or developmentally
challenged kids with stuff train to deal with difficulties appropriately. Thanks and good luck!
I have a child with Prader-Willi Syndrome who had 6 cavities and 1 tooth extraction and it was difficult to understand the process for obtaining services particularly regarding anaesthesia
Try to find a specialist to check if my child needs to seed a tooth since he lacks it. We worry there are two baby
teeth without adult teeth root, he changed several teeth already. In case, those baby teeth can't work, it need seed teeth or not.
I can foresee problems in the future. My son requires braces; I have no idea how we are going to do this. The
sensory issue of having him have braces cemented to his teeth is an obstacle beyond realization at this time. I
can't even imagine putting him or myself through it.
I found the questionnaire poorly designed, not taking into consideration commonly associated aspects/considerations with ASD. You would have been better served to review the questions with a number
of ASD families first to more intelligently design the questions. If you did do this - I'm very surprised!
Dental care is important b/c if neglected will affect the social situations my child will have to face. Bad breath is
quite a disadvantage that only adds up to rest of social difficulties we already face!
Finding dental care for autistic children is difficult, there should be more support.
Thank you so much for asking! All of these issues noted are regular challenges with families with ASD.
I did have another child with autism (identical twin) but he died of a brain tumour in June 2007.
Anaesthesia should be covered by insurance, to allow autistic kids preventative care.
This is an important issue -- look forward to seeing results and I hope increased public and policy-maker awareness about what is an important health issue for some of our most vulnerable citizens. After a very
traumatic and difficult dental health journey with my son (starting at age 3) which included sedation that had paradoxical effects, physical restraints, etc., thankfully, we were referred by another parent to a wonderful local
dentist in private practice who has an OT background and is accustomed to working with children with special
needs and ASDs. Over the last year, she has managed to turn his experience around completely. He's even had x-rays, scaling, polishing, etc. and will not go to bed ever without brushing thoroughly and having me floss
his teeth!
I hope this study will show the deficits in dental care. I see many children with autism struggling to find a dentist. My personal experience was very upsetting as my son was in pain due to abscesses and it was very
hard to find a dentist to see him quickly. His pain caused him to become more self - injurious and was very difficult t managed. I was very disappointed with the care he received and being hit with $500 extra because of
his diagnosis. I am very grateful that my recent experience with Sic Kids was positive.
The best thing we did was to come to the u of t dentistry clinic and have all of his issues addressed while
asleep (~ 5 root canals / caps). After this we found a dentist to take care of his ongoing needs.
111
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