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In 2013, the American Psychiatric Association published the revised definition of autism spectrum disorder (ASD) in Diagnostic and Statistical Manual of Mental Disorders (DSM-5)1 (Table 1). ASD is a sensory processing disorder, which refers to the way in which the central nervous system integrates sensations from the body and environment. Individuals with ASD have characteristics of persistent impairments in social communication and interaction. They show restrictive activities and repetitive behaviors that are usually present in the early developmental period. The spectrum disorder affects approximately 1 in 88 children, with males approximately four times more likely to have ASD as females. From 2002 to 2008, a 72% increase was reported in the incidence of children receiving ASD diagnoses, raising the likelihood that dental teams will be seeing many of these children in their offices.2 Controversy remains regarding whether this is a true rise in the number of cases or if improved or changing diagnostic methods can be attributed. Seminal work on the neuropathology of ASD3 shows changes in the cerebellum, cortical microstructure, and neuro-inflammation that indicate an etiology of prenatal onset and persistent postnatal immune activation.
Education and behavioral management remain the biggest challenges for children with ASD. Although not yet defined, the developmental trajectory suggests some ASD characteristics may fade in adulthood.
Understanding Autism Spectrum Disorder
Without reviewing all the various phenotypic characteristics of ASD, what the dental team most needs to know about the etiology is summarized by pediatric neurologist Andrew W. Zimmerman, MD, who notes, “Autism is a postnatal system-wide disturbance with a prenatal onset.” This disturbance expresses itself by creating the behaviorial challenges the dental team faces when treating patients with ASD. Zimmerman observes, “We must get into their world” and try to understand why children with ASD act the way they do.
Therefore, in order for dental team members to do so, they must start by learning to recognize the five core characteristics of autistic behavioral pattern:
• Impairment in social interaction
• Impairment in communication
• Stereotypic repetitive behavior patterning
• Impairment in sensory processing and detection anxiety
• Dyspraxia – defined as the inability to perform a purposeful movement.
One individual with ASD who has written about the condition is Temple Grandin, PhD, an author with a doctorate degree in animal science. In her book Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior, she best frames the way in which children with ASD see the world4:
“A lot of autistic children can’t stand to be touched. I was like that when I was a little kid. I wanted to feel the nice social feeling of being held, but it was just too overwhelming. It was like a tidal wave of sensation drowning me. I know that doesn’t make sense to people who aren’t autistic, and the only other way I can think of to describe it is being in the ocean with waves washing over you that keep getting bigger and bigger. At first the waves feels good, and the sensation is soothing and relaxing. But as the waves get stronger and more powerful you feel like you’re starting to drown and you panic. Being touched by another person was so intense it was intolerable. I would start to panic and I had to pull away.”
The dental team members should not perceive ASD as a disorder, but instead should understand that the challenges and different behaviors that present as ASD stems from how these children view their worlds. It is from this awareness that behavioral guidance with the D-Termined™ Program of Familiarization and Repetitive Tasking originates.5 It becomes less about managing behavior and more about understanding it. What is the child doing at school? How is that going? Are the children using picture boards, storybooks, or sign language? What is it like if the child has a “meltdown”? How does the child interact with others?
Further to this point, any discussion about patients with ASD must be framed within their caregiver circle. All children depend for their well-being on parents, family, community, and service providers. For children with ASD, the reach for medical, educational, social, and psychological support is much greater.
Although dental conditions in children with ASD are less remarkable and certainly less defined than in children with other developmental disabilities, such as Down syndrome or Lowe syndrome, some generalizations can be made.
Children with ASD have aversions to consistency, texture, taste, and temperature of food, which all could affect their diets. Sweets, sometimes used in behavioral modification programs, may contribute to caries development. Tongue coordination difficulties, oral tactile sensitivities, medication side effects, bruxism, and food pouching may contribute to dental problems.6 However, children with ASD have been reported to have lower caries experience than children without the condition.7
Some reports have pointed to a concern that an increased prevalence of esophageal reflux in children with ASD might cause dental erosion or bruxism in both the primary and permanent teeth. Increases in dental trauma have also been reported due to “accident proneness” and self-inflicted behaviors;8 however, these findings have not been substantiated.
Further, children with ASD were comparable with children who do not have the condition regarding rates of dental pain, presence of cavities, broken teeth or teeth needing repair, misaligned teeth, hygiene, discoloration, enamel problems, or even bruxism.9
Children with ASD not only have difficulties cooperating with dental procedures in the office, but also have trouble complying with home-care instructions due to impairments in communication skills, sensory and tactile responses, and repetitive patterns of behaviors.10 Managing the behavior is the most challenging aspect of trying to provide comprehensive, quality dental care for children with ASD.11
A common misunderstanding is that the solution for managing behavior in patients with autism is in a pharmacologic approach (ie, the use of sedation and general anesthesia). Instead, it is by understanding the way that children with ASD learn that the dental staff will find the best opportunity to have routine, successful dental visits without the use of medication. Non-pharmacologic management approaches have been contemporized and correspond to the learning techniques used in the school environment.12-14 Verbal cueing (“tell, show, do”) and reinforcement alone may not be sufficient.
D-Termined Program of Familiarization and Sequential Tasking
D-Termined Program of Familiarization and Sequential Tasking is based in applied behavior analysis (ABA) theory and uses the “Familiarization through Repetitive Tasking” philosophy. ABA theory systematically applies the principles of behavior analysis in order to identify the variables that improve social behavior.15,16
Repetition and familiarization form the basis of this non-pharmalogic approach.17,18 Three repetition factors are the keys to success in this behavioral guidance technique. Dental staff members must repeat the following verbal commands to the patient and use them repetitively when employing the D-Termined program:
3. Verbal “1, 2, 3, 4, 5, 6…” or visual (picture stories or charts) for a counting framework (Chart 1)
The acceptable and unacceptable treatment positions should be reviewed and practiced with the parent and patient (Figure 2). After learning the use of these repetition commands, the dental provider can now plan the five major steps of the D-Termined program. (Each step begins with the letter D for determined.)
• Divide the skill into small components. Coming into the operatory, sitting in the chair, putting chair back, sitting back in the chair with feet out straight and hands on tummy, counting fingers, counting a tooth, counting four upper front teeth, etc. are part of 20 steps, identified as tasks needed for a classic first visit. The office treatment sheet (Chart 2) will direct the treatment objectives from each visit. All visits are logged on the treatment sheet, and a narrative is added to the chart. The number of visits needed to complete the 20 steps will vary from each patient. Each step becomes a separate objective.
• Demonstrate the skill. Positional modeling means that when teaching a skill, such as “legs out straight,” the dental provider will actually put the legs out straight and then support that position for a 10-second count. Follow immediately after every 10 count with praise. Continue with “hands on your tummy,” meaning position the hands on the tummy and support that position with a 10-second count, followed immediately with praise for all 20 steps.
• Drill the skill. Schedule a series of 5 to 6 repetitive visits 1 week apart. Use the task list to divide the tasks and skills to be mastered and customized for each patient. Using the office treatment sheet (Chart 2) will allow the dental provider to follow the visit to measure progress.
• Delight in the repetition. Everyone in the operatory remains happy, upbeat, smiling, and determined to keep trying.
• Delegate the patient to your trained auxiliary. Dental assistants and dental hygienists are often the key to the success of the D-Termined program. Each weekly visit is scheduled for 30 minutes (may take more or less time). These appointments must not be dentist time intensive. A trained dental auxiliary will start each visit and move the procedure along the task/step progression. The dentist then sees the patient at the end of the visit, starting with putting the chair back down and then progressing to the point on the task list that was the defined objective for the day. The bulk of the repetitive tasking must be performed by the trained auxiliary members in order to remain financially balanced for the office.
Parents and teachers can practice with the patient between visits with a disposable mirror, saliva ejector, and fluoride trays, provided by the dental team. The purpose of using the fluoride trays (versus fluoride varnish) is for the patient to acquire the skills to have tastes, impression trays, and various other materials put in the mouth. This is an important step in desensitization and will prepare the patient for mouthguards, radiographs, or orthodontic retainers and appliances.
Discussing Treatment with Parents
Good oral hygiene begins at home and starts early with establishment of the Dental Home. The American Academy of Pediatric Dentistry recommends that the first dental visit should be soon after the first primary tooth erupts or by age 119 (Figure 3). Good oral health requires discipline, from an early age, especially for children with ASD.20
Like other children, individuals with ASD develop jaw growth and tooth alignment problems early because of pacifier use, thumbsucking, or other habits. Although recognized by dentists and parents/caregivers, these malocclusions are often left untreated simply because of the outdated attitude that the child’s disabilities eclipse the need for orthodontic treatment. Having ASD is not a contraindication for receiving orthodontic treatment.
Team members should ensure that parents understand the concept of starting early and being disciplined, and should ask them to be part of the dental team.20 The patient will take the skills learned in childhood, through transition to a general dentistry practice at an older age,21 and the reward will be in the child’s smile for a lifetime.
The D-Termined program should not be dentist time intensive, but it will be staff time intensive. All staff should be trained in the technique. Support materials and an updated DVD are also available for use in the office.22
Some may ask why the effort is necessary and whether it succeeds. To that point, this author would like to conclude with the story of a 5-year-old patient with ASD and behavioral issues. The patient would not sit in a chair, was kicking her feet, and was vocally loud, saying, “No, no, no.” She made no eye contact. With parental support and a dedicated staff, the D-termined program was employed, and eventually the patient received cleanings, sealants, restorative treatments, a Hawley retainer and then comprehensive orthodontic treatment at age 13. At age 19, she left for college.
The author would like to thank Dr. Andrew Zimmerman for his assistance.
About the Author
David A. Tesini, DMD, MS, FDS RCSEd
Associate Clinical Professor, Tufts University School of Dental Medicine
Private Pediatric Dental Practice
National spokesperson and member of the American Academy of Pediatric Dentistry
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4. Grandin T, Johnson C. Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Wilmington, MA: Mariner Books; 2005.
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