Treating patients with autism can be very rewarding for the dental hygienist
BY Josalyn Sewell, RDH, OMT
My world revolves around autism. I read an autism related research article, blog post, or newsletter every day. It is difficult to convey the complexity of autism in a short article. Certain aspects of autism, such as related medical conditions or sensory processing disorder, could lead me to write an entire publication.
So much information is available about autism and associated medical conditions, as well as oral health implications.
- The autism challenge: In some cases, anesthesia is needed. For the rest, the motto is: Stop needless sedation
- Mouth breathing for dummies
- Nova Southeastern University’s College of Dental Medicine receives $3.4 million grant to enhance dental care and access for people with autism
There is no one cause of autism, just as there is no one type of autism. Over several years, scientists have identified a number of rare gene changes or mutations associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.
A growing body of research suggests that a woman can reduce her risk of having a child with autism by taking prenatal vitamins containing folic acid and/or eating a diet rich in folic acid (at least 600 mcg a day) during the months before and after conception.1
There are some related conditions often associated with autism:
• Low IQ - Research studies have frequently used inappropriate IQ tests, such as verbal tests with nonverbal children, and in some cases have estimated children's intelligence level without any objective evidence. It is incorrect to assume that an autism diagnosis means an individual will have a low IQ (previously referred to as mental retardation). It is also incorrect to assume that an autism diagnosis equates to a high IQ with savant qualities like perfect pitch in music or mathematical ability.
• Seizures - It is estimated that around 30% of people with autism develop epilepsy - some in early childhood and others as they go through hormone level changes in puberty.
• Chronic constipation and/or diarrhea - Medical literature states that about 45% of children with autism and 47% of adults on the spectrum have gastrointestinal symptoms. Diarrhea is most common; abdominal pain is cited next most frequently, and constipation is reported slightly less. Constipation in autism is usually not hard, impacted stools, but the slow passage of stools with long gaps in between, and loose stools when they do come.
• Sleep problems - Many individuals with autism have sleep problems. Night waking may be due to gastrointestinal issues, allergies, environmental intolerances, seizures or the effects of medications. Other potential causes are sleep apnea, sleep terrors, or confusional arousals. Children with sensory processing difficulties may have more problems falling asleep and increased periods of night waking.
• Pica - About 30% of children with autism have moderate to severe pica, which means they eat non-food items such as paint, sand, dirt, paper, etc. Pica can be dangerous as ingesting these inedible substances can cause choking, digestive problems, parasitic infections, and other illnesses as well as the potential for chipping teeth, gouging gingiva, etc.
• Low muscle tone - About 30% of children with autism have moderate to severe loss of muscle tone, which can limit their gross and fine motor skills.
• Sensory processing disorder - Many people with autism have sensory processing disorder (formerly known as sensory integration disorder), which involves unusual sensitivities to sounds, sights, touch, taste, and smells. High-pitched intermittent sounds, such as the dental drill, may be painful to these children. Scratchy fabrics and clothing tags may also be intolerable, and some children have visual sensitivities, such as to the flickering of fluorescent lights.
• Allergies/immune system - Many children with autism also suffer immune system deficiencies or immune dysregulation. Within the autism spectrum population, there are groups that will experience rashes, allergic sensitivities, gastrointestinal, ear and other infections as a result. Immune deficiencies and/or immune dysregulation make a person with autism more vulnerable to infection, chronic inflammation and autoimmune reactions, most frequently in the brain and gastrointestinal tract.
• Pain - Some people with autism have very high pain thresholds (insensitivity to pain), while others have very low pain thresholds.2
What is Autism?
Autism Speaks explains "autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
"Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age.
"Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the autism spectrum-a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States."1
It is important to understand that autism is a spectrum disorder, which means that no two individuals you work with will be the same. That being said, it is difficult to fully describe the experiences you may face as a clinician. I will do my best to make some generalizations and paint a little picture of what you will experience chairside if you have never worked with individuals with autism.
First, understand that behavior is communication. Imagine how difficult it would be to express yourself if you had limited or no ability to say how you felt. When individuals with autism cry, yell, run away, refuse to open their mouth, or even sit in the chair, take a moment to recognize they are not being "naughty." They are communicating with you that they are scared, confused, or simply do not understand what is being asked of them.
Sensory processing disorder is extremely common in children with autism as well as ADD, ADHD, and anxiety and it can affect every aspect of the dental appointment. The lights are bright, the sounds are loud, and the tastes are strong. While it may be a momentary inconvenience for typical patients, sensory overload can make an individual with autism feel out of control, upset, or agitated.
The hypothalamus in our brain has the ability to filter out and ignore the constant intermittent hum of the sterilizer, the buzzing of the autoclave, and the whizz of the drill, but many individuals with autism cannot filter those sounds out and will hear them loud and clear constantly, and it can be exhausting. It may appear that the patient cannot sit still in the chair and focus on your directions because there is simply too much stimulation. They may keep their eyes closed, cover their ears, or feel like the mint prophy paste is burning their tongue.
Stimming is a word that refers to self-stimulation. This term refers to the repetitive behavior exhibited by many individuals with autism. It may be hand flapping, spinning, wiggling the fingers in front of the face, etc. Very often, stimming is present when the individual is excited, happy, or, in my personal experience, is used as a coping mechanism to anxiety or new situations.
I find that my patients will stim a lot during the first appointments until they get to know me, understand that I will not hurt them, and learn the appropriate behavior for the appointment, including what the expectations are (sit in the big chair, lie back, open mouth, keep hands down, etc.) and then it decreases dramatically.
Stimming may look strange if you have never witnessed it. But keep in mind that many of us exhibit similar behavior such as leg shaking, hair twirling, chewing of gum constantly, or finger tapping, we just do not call it by the same name. Allow the patient to stim as long as it does not interfere with the appointment. If a little hand flapping goes on while you polish know that it might just be the patient is so proud of themselves for overcoming their fear they might need to celebrate a little with their whole body.
Eye contact may be different. The patient may avoid eye contact all together or it may be fleeting. Please overcome your feelings that this is rude or disrespectful behavior. It is simply difficult for many to do.
The Caregiver and oral implications
As a health-care provider, you are aware of the effects of stress on the body. Glucose regulation, immune function, and mental activity can be impaired by chronic stress. Researchers studied a group of autism moms and found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat. While the study was done on mothers, we can assume the findings for fathers and full-time caregivers would be the same.
Err on the side of patience and kindness; it may be that the parent/caregiver hasn't slept in two days, or they are distracted from fighting with the school for adequate services, or overwhelmed with never-ending therapy appointments.3
Autism itself does not cause oral health problems, but the behaviors associated with autism create an environment that certain oral conditions are likely to be present.
• Caries. In general, individuals with autism have very limited diets. Depending on what the individual prefers that may increase the likelihood of caries if they prefer sweets, sodas, juice, fermentable carbohydrates etc. or as some studies have shown that the autism population have fewer caries in part due to the limited diet.
As this population is often dependent on caregivers to provide food and snacks, they often do not have access to cariogenic foods like typical peers might. As with other patients, it is important to assess on a case-by-case basis including a detailed conversation about food preferences and habits.
• Xerostomia. Related to medication. There is not a medication that treats autism. Medications used are to treat related health conditions or behaviors such as seizures, constipation, anxiety, depression, ADD/ADHD, sleep aids, etc.
• Erosion due to acid reflux. If erosion is present on the lingual surfaces of the teeth consistent with acid reflux please, discuss this with the parent or caregiver. GI problems are extremely common and often undiagnosed. As communication is difficult, the patient may not have the ability to express pain or discomfort, and you may be able to provide a tremendous clue to help the patient and the family. If erosion is present and the family verifies sleep disturbances (unexplained awakening and cannot go back to sleep), possible grumpiness or agitation that cannot be explained, please consider referring to a medical professional who can help determine if acid reflux or other digestive problems are present and can be treated.
• Attrition. Living with autism can be stressful. Encourage parents/caregivers to keep a journal to see if there are patterns to grinding. If it is only at night, assess the airway and discuss snoring, gasping, etc., consistent with sleep disturbances such as sleep apnea and make appropriate referrals. If it happens only when the individual is at school, it may be a result of feeling stressed or overwhelmed.
Take a moment and clench your teeth and grind them a little, do you feel how much sensory input you get? Sometimes individuals with autism will use sensory output - meaning something they do (clenching, grinding, head banging, clapping, jumping, etc.) to help decrease the amount of input - or something they receive (lights, sounds, touch, etc.). It is unlikely that the patient will be able to wear an occlusal guard. Therefore, it is best to try to find the reason for clenching/grinding rather than masking the effects.
• Plaque/calculus. A large portion of the autism population has a difficult time with daily biofilm removal. It is a chief concern among most parents. The toothbrush bristles, toothpaste flavor, and texture of foam provide sensory challenges. The fine motor skills needed for adequate brushing are often lacking. Being touched is challenging. It is a myth that all individuals with autism do not want to be touched, although there is a portion of the population that do struggle with it.
In my experience, even if a patient is comfortable with touch, they are still apprehensive about their head, ears, and mouth being touched. Rarely do I meet a patient who willingly allows the parent/caregiver to brush without any hesitation and almost never do I meet families that are able to floss.
• Gingivitis/periodontitis. Insufficient home care can occur due to the sensory challenges.
• Gingival overgrowth. Potentially present in patients who require anti-seizure medications or those who have tuberous sclerosis complex, which is a medical condition that causes autism type behaviors.
• Trauma. Many individuals lack an understanding of danger and seem fearless. They may have a desire to climb but not understand the consequences of falling. Trauma may be common due to falling, climbing, jumping, etc., as well as chewing on non-food items such as rocks and sticks if pica is present. As many individuals have a high pain threshold, it would not be uncommon for dental trauma or disease to be present that looks painful and the parent/caregiver have no idea something is wrong.
• Drooling/incorrect swallowing patterns. This is seen more often in those severely affected by autism. Individuals who do not speak have muscles that are not used as often and therefore may lack coordination or a cognitive understanding that it is necessary to swallow throughout the day even when not eating.
Autism is a complex disorder. It can involve multiple systems in the body and cause considerable challenges to an individual not able to adequately express their needs. With so many potential challenges facing an individual with autism, it is of utmost importance for the oral structures and tissues to be in proper working order and free of pain.
Preventive dental hygiene services will have a positive lifetime effect for individuals and families affected by autism. Working with patients with autism will have a positive lifetime effect on the dental hygienist, as it is extremely rewarding. If you are interested in learning more about autism and what everyday life is like consider visiting my blog autismaintforsissys.blogspot.com. RDH
Josalyn Sewell, RDH, OMT, enjoys many aspects of a dental hygiene career, including clinical work, teaching, speaking, writing, and sales. She is a member of both the ADHA and CareerFusion. Josalyn's full-time position is in domestic management (stay-at-home-mostly-mom) in a rural town in the mountains of eastern Arizona. She blogs about what it is like to raise a child on the autism spectrum. You can find her blog at: autismaintforsissys.blogspot.com or on Facebook: Autism Ain't for Sissys. References
1. Autism Speaks. (2015). What is Autism? Retrieved 05 30, 2015, from Autism Speaks: www.autismspeaks.org/what-autism
2. Autism Society of America. (n.d.). Related Conditions. Retrieved 06 01, 2015, from Autism Society of America: www.autism-society.org/what-is/autism/related-conditions/
3. Diament, M. (2009, 11 10). Autism Moms have Stress Similiar to Combat Soldiers. Retrieved 06 01, 2015, from disabilityscoop.com: www.disabilityscoop.com/2011/10/autism-moms-stress/6121/