All parents want to feel assured their children will be accepted, treated kindly, and regarded with understanding. But let’s face it, children are complicated! For parents nurturing a developing child, life may seem like riding a rollercoaster—an emotional journey with many twists and turns. We’re all acquainted with toddler tantrums, hormonal tweens, and embarrassed teenagers. Now what happens when we throw autism into the mix?
In this issue, Shift magazine’s editor sits down with Amanda Smith, a board-certified behavior analyst, and Dr. Mandy Ashley, a pediatric dentist, to discuss therapeutic approaches to helping pediatric patients with autism spectrum disorder. They also provide supportive suggestions for parents of autistic children to help them overcome the anxiety associated with medical and dental appointments. In addition, they bring awareness to the community that treatment needs to be given with understanding and inclusion.
SHIFT: Where are you currently employed and what is your role?
AS: I currently work for a local county Office of Education where I am the sole Board Certified Behavior Analyst (BCBA) overseeing approximately 24 separate county programs consisting of autism classrooms, adult programs, preschools, and day classes for moderate/severe special needs individuals. I prefer to train the trainers on behavior management so they can confidently manage behavioral crises without hesitation and then they, too, can educate and train their staff.
SHIFT: Please explain briefly for us what autism is and how it affects children.
AS: Autism is a spectrum disorder characterized by social and communication deficits as well as behavioral excesses, including sensory processing and dysregulation. A child with autism is often misunderstood as a disobedient child or one that just “needs a little discipline.” However, the brain is just so much more complex than that.
A neurotypical individual accepts information into their brain constantly (think of your five senses) and interprets that information in ways that are generally socially appropriate. For individuals with autism, however, information that enters their brains is often interpreted in a way that comes off as socially “inappropriate.” For example, if an autistic child hears an emergency siren at a distance, they may begin to scream loudly. When neurotypical individuals observe this behavior, they do not understand why this child is screaming, and perhaps they can’t even hear the siren themselves. Individuals with autism often benefit from modified sensory input—whether physical touch or tactile, noise levels, lights, etc.—increasing or decreasing the amount of stimuli to help them feel more regulated.
SHIFT: Do you have any current statistics on the number of children with autism? Is the frequency of the disorder on the rise, and is it true that autism is more common in boys than in girls?
AS: According to the Centers for Disease Control (CDC), autism is on the rise. In 2000, one in 150 children were diagnosed as autistic, rising to one in 69 in 2012. Currently, one in 59 children are diagnosed with an autism spectrum disorder. Autism is reportedly four times more prevalent in boys than girls.
SHIFT: When speaking with parents of children with autism, what have you found to be the biggest challenges that these parents face on a day-to-day basis, especially when they have a medical or dental appointment scheduled?
AS: Children on the autism spectrum can’t always communicate their wants or needs appropriately and will often use other means to communicate. Screaming, crying, flopping, thrashing their body, eloping, and aggression are just a few of the behaviors that I’ve been asked to help parents manage when in public settings. The amount of physical, emotional, and mental energy it requires for parents to get through a shopping trip with an autistic child (not to mention the stares or judgmental comments they may receive from bystanders) can be so exhausting that they just don’t want to do it anymore. When arranging medical and dental appointments, most parents have reported long waits, required advanced scheduling, difficulty with rescheduling, or cancelling of appointments. They also report difficulties when facing an emergency or an unexpected event. Parents have often cited the need to leave appointments early due to challenging behaviors in the lobby.
SHIFT: When dealing with stressful situations, what are some of the most common behaviors that children with autism exhibit?
AS: “Tantrum” behaviors are common. These look very different from child to child, but may include yelling, screaming, crying, flailing, and flopping to the ground. Aggression is also very common—hitting, pulling hair and clothing, kicking, and biting. Children may curse loudly or say other inappropriate things to escape the situation. Self-injurious behaviors (SIB) are very common. These can range from mild to severe head banging (with hands or against a hard surface), biting, scratching, or pulling their hair out. Elopement from the situation, often by running through the parking lot or out of the building, is also quite common.
Parents often give in to these escape-maintained behaviors due to safety concerns, feeling embarrassed, or being judged by others.
SHIFT: In pediatric dentistry, we often use the “tell, show, do” approach to help desensitize children to the dental environment. Does this approach work well with the autistic patient, or are there modifications to this approach that would work better for autistic children, especially those with sensory issues?
AS: I encourage role playing so the child can get as much exposure as possible to a new situation. Children with autism may have difficulty generalizing concepts; however, if a child can visit a new facility (outside of an appointment), this is ideal. Desensitizing them to the sounds, smells, noise, etc. is very important. Even if the experience is not “perfect” (because it never is), it gives parents peace of mind that at least an attempt was made to avoid troublesome outcomes, and then they can predict more of their child’s response. Using social stories is also a common strategy used to help children understand what behaviors will be expected and what the outcomes will be in specific situations.
SHIFT: When working with an autistic patient, what are three or four different techniques that would be helpful to use in managing behavioral difficulties in clinical situations?
AS: Know the child’s likes/dislikes prior to his/her visit. The child may prefer noise-cancelling headphones, dim lighting, soft music, access to fidget tools (like squishy balls, spikey balls, pin-impression toys, light-up toys, etc.), access to movement breaks (like jumping, running, or spinning in the doctor’s chair), pillows/bean bags, or weighted blankets. Know how much pressure or physical touch the child likes.
SHIFT: Many offices will separate children from their parents if cooperation is becoming a problem, especially when the parent’s response tends to escalate the child’s behavior. How important is it when treating autistic children to involve their parents, and is there ever a good reason to separate autistic children from their parents?
AS: I would always suggest a parent be with their child. It is hard enough on the child to be in an unpredictable setting but taking the only familiar person away from them creates the possibility of increased behavioral challenges. Parents can learn a lot from the doctors, especially if they will help make the experience more individualized to their child’s needs, giving them the space and time they may require and taking a genuine and compassionate approach to treatment
SHIFT: You are such a high-energy person and so passionate about dentistry. What was the catalyst that created your passion, and why do you have such an interest in the underserved, autistic, and special needs communities?
MA: I definitely feel that I have been lucky enough in my life to have gone this far with my education. It’s been a great privilege to have become a pediatric dentist, and that privilege comes with a challenge. My challenge is to always make sure I am helping people who have traditionally faced obstacles to receiving adequate dental care. The special needs community also consists of amazing parents and caregivers. Their unselfish devotion to their children’s health inspires me to break down, wherever possible, the barriers to healthcare access so that their life might be, in some small way, a little easier because going to the dentist is a fun and comfortable experience.
SHIFT: Knowing that the prevalence of autism is increasing rapidly, what were some of the things you did when building your new offices in anticipation of this fact?
MA: Creating a special dark, starry room helped differentiate my office. I wanted to let the special needs community know my practice was designed with every child in mind. While I was still in the design and planning process for my first office, I met with our local center serving children on the autism spectrum. I discussed how I could create a dental treatment environment that mimicked a sensory room and provided autistic kids with a way to become more relaxed during a dental exam and cleaning. The sensory rooms that I created in my offices have star lighted ceilings and dark calming walls with quieting acoustic tiles. We use the Midwest cordless prophy handpiece for cleanings and a lighted Dent-light style mirror for the exams. This minimally invasive technique has helped us avoid OR visits every six months for even severely autistic children and helped hundreds of kids in our area get desensitized to their dental visits to the point where they are no longer coded as a special patient in our system because they have “graduated” to scheduling regular dental visits in a regular dental chair.
SHIFT: What protocol have you adopted, or do you have any procedures in place to streamline your appointments with special needs patients?
MA: Because I designed my newest office myself, I had the freedom to create whatever I wanted. I designed it to accommodate a “Roll Up, Call Up” appointment system. Parents of children with special healthcare needs that may be disturbed by a busy waiting room, or children needing to limit their exposure to others because of their immunocompromised condition, can park in the back of the office in one of three designated “Roll Up, Call Up” parking spots. Once there, the parent calls the number on the posted sign and a SKY team member will bring out any necessary paperwork if they have not already filled it out online using our secure patient portal.
The SKY team member will have the child’s exam or treatment room ready and will escort the family through a private entry directly into their treatment room, skipping the lobby entirely. Our families with severely autistic children, children in wheelchairs, and children undergoing chemotherapy or immunocompromised status love this option of skipping past the front desk and having a concierge like experience at the dentist. We have had so many parents thank us profusely and say that this is what they would love to see across all of their healthcare experiences. Simply having the “Roll Up, Call Up” system in place has enabled me to treat kids and adults that might pose a danger to themselves or others in the waiting room.
SHIFT: Providing this type of concierge service—the private entrances, the additional support—is very impressive. What is your motivation for providing this type of specialized care?
MA: This is something we wanted to do because we wanted to respect our patient families. This system allows us to see both kids and adults, because some adults with behavioral issues cannot handle the waiting room either. It just takes that worry completely off the parents’ and caregivers’ minds, knowing they will be ushered directly into a comfortable treatment area right away.
Special dark, starry-sky treatment rooms mimic sensory environment and provide autistic kids with a way to become more relaxed during a dental exam and cleaning.
SHIFT: How important is repetition and consistency when scheduling appointments with patients with autism? Do you always schedule the same assistant, room, etc.?
MA: If a child has done exceptionally well with a particular assistant or hygienist, we will note that in our record and try to have the same person with the child for the next appointment. But the vast majority of our patients with autism are comfortable with interchangeable staff because the flow of the appointment is the same. The flow of the appointment becomes the consistent part.
SHIFT: Do you have any advice for dentists that are not sure how and when to schedule their patients? What are some of the protocols you have put into place that make scheduling treatment easier for your staff, patients, and caregivers?
MA: Initially you could block an hour of hygiene time for kids with special healthcare needs. Start your appointments 15–20 minutes early to allow the child to arrive and “settle in.” Like most young kids, behavior can deteriorate during the day, so you might want to initially block off your last appointments of the day. As your staff gets comfortable and kids see less “deer in the headlights” fear in your staff members’ eyes, you can open appointments later in the day for children with special healthcare needs.
We have also found that many preschool children may not have a diagnosis yet but are already exhibiting challenging behaviors. We ask the parents, “Are there any behavioral concerns you have about your child’s first dental visit?” It’s been very helpful to know if a child is being evaluated for autism before the first visit. Parents may be more willing to disclose their concerns when asked directly, especially if they have not yet received an official diagnosis. Before we started asking this question, we were presented with more than a few surprises with difficult behaviors in our more open areas. Now we are able to start appointments for kids with behavioral concerns in a more private area, right from the start.
We don’t have any restriction on the time or day that parents are allowed to book an appointment, but we do highlight their special healthcare needs status in our Dentrix schedule. After the practice had been open for a couple years, we were getting so many new families with kids on the autism spectrum that we had one morning with eight new severely autistic children, and that did create a slight amount of mayhem with my staff and me trying to get all of the autistic children and our other patients seen in the most timely, comfortable, and accommodating manner possible. After that special morning, we created a system where records of patients with special healthcare needs requiring additional doctor time are flagged with a purple color in our patient management system. Our staff knows to stagger these purple appointments throughout the day so that we can continue to flow with all of our appointments in a timely manner and increase the comfort level of all patients.
SHIFT: When treating a patient with autism, what are some techniques you use to manage behavioral outburst, and are there any times when you cancel patients or reschedule them because of these behaviors? What do these interventions look like in your practice, and is there ever a time when it is best not to have a caregiver present?
MA: I like parents or caregivers to be present whenever possible. The only times I have parents stay out of the room when treating autistic children is when the parent has requested it. Now that my practice is seven years old, we are seeing teenage autistic patients who have been coming to us from the beginning, and we have some families who use our appointments to help build confidence and independence skills. The parents trust that continued positive dental visits will help foster more independence and confidence in their child.
Sometimes kids are just having a bad day. We try to coach parents to not stack other appointments on top of a first dental visit. But it happens sometimes anyway. If a child is screaming and fighting their parent coming in the door and we see the Band-Aids from recent shots, we do offer to reschedule, providing the option of a different day and an appointment earlier in the morning when we have a fresh start behaviorally.
Our practice referral area is about a 100-mile radius, so we have some families that want us to just push on and complete the visit despite a deterioration in behavior. We can pivot from a more traditional dental cleaning in a dental chair to a stand-up, cordless prophy in a “starry room” if parents prefer.
I try to minimize the number of times we are exposing our children with special needs to general anesthesia experiences, so we also offer immobilization if parents are present in the room and want to proceed in that way.
SHIFT: Do you modify your “tell, show, do” desensitizing protocol for children with autism or sensory disorders?
MA: Yes, we even have appointments on days with no provider present so that kids can essentially model their dental visit without ever having someone look in their mouths. It’s like a dry run or mock visit. These are scheduled on days I’m out of the office or working in the hospital. The whole office and even the parking lot is very quiet and low-key since there are no other patients. The child is able to have their mock X-ray taken, and they walk around the office finding animals hidden on the walls.
We call it our Smile Safari. After completing the safari, the patients receive a prize, even if they only find one animal. The Smile Safari is a way for us to standardize the experience, especially for our staff, and it helps harmonize the experience for the patients.
SHIFT: Do you train your staff specifically on how to prepare for appointments with autistic patients and other special needs children?
MA: We have an orientation, basically providing our staff with a check sheet that outlines a step-by-step plan on how to accommodate special needs kids and lead them through a Smile Safari. Our staff are trained how to do everything step-by-step.
SHIFT: What items do you have in your office that can help prevent a behavioral outburst?
MA: I feel like timing is everything when it comes to preventing outbursts. If we can get kids settled back in their room before they have time to become upset, we are starting off ahead of the game. We also have a lot of items like the Herman Miller rotating chair and Gaim bounce balls that help kids let off steam if they need to during their dental appointment.
SHIFT: Would you please comment on the concept— some call it a “grandfathered tradition”—that you can only see autistic patients on certain days because special needs patients require longer appointments?
MA: A lot of associates are told by an older dentist, “You know, it’s just not possible to see severely autistic kids, kids with wheelchairs, kids with Tourette’s syndrome, or kids with severe medical issues on the same day as “regular patients.” However, I have found that it is completely possible. We see so many kids with all of these healthcare needs, especially kids on the autism spectrum. They don’t take any longer— except maybe on the first visit.
This mindset that you can only see special needs patients on certain days needs to go away. The trend is toward integration rather than some kind of “quarantine” that compartmentalizes these kids and assigns them a special time that they can be seen. People with special health needs need to be integrated into a regular schedule with the same access to healthcare as the general population.
SHIFT: What advice would you give pediatric dental residents on treating autistic patients when they get into private practice, and what challenge would you give your colleagues in private practice on how to treat this unique and growing population?
MA: I think residents should get all the experience they can during their programs. And don’t let your attending handle all of the communication with the parents. As a resident, you need to be able to directly communicate with families and learn what problems they have with accessing dental care. Ask the moms how it went with parking, getting to the dental clinic, getting through the door to the operatory, etc. You need to get a good idea of all the challenges these families are facing before you give them advice on better brushing techniques.
My challenge for newly minted pediatric dentists is this. Look at the practice you are joining or creating and define one way you can increase access for kids with special healthcare needs. It might be as simple as creating a way for families to wait in the car until their room is ready, or converting a “consultation room” to a “sensory room” to allow for a more relaxing nontraditional treatment environment. Become the healthcare provider that anchors the family of special needs kids to good experiences with easy access to care.
On average, care of an autistic child costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents. Costs increase with the occurrence of intellectual disability.