Dental tool kit: Caregivers and autistic loved ones
At the dentist
In this section for Caregivers and autistic loved ones: At home | At the dentist | Autistic perspective
Preparing for the dentist
Autistic people may be prone to poor dental health because of dental anxiety. Some may fear and even avoid the dentist. Specifically, some children with ASD may exhibit uncooperative behaviors during dentist visits, which impedes their oral care. This is not uncommon. It is also not a reason to give up or lose hope. This section provides tips and tools to make trips to the dentist successful.
To start with, the Institute for Exceptional Care, or IEC, a national nonprofit improving healthcare for people with intellectual and developmental disabilities, in conjunction with their partner, Delta Dental, created What to Expect at Your Dental Visit. This helpful handout includes tips on what to bring to the dentist, available accommodations, sensory expectations, communication supports, and ways the office can make your appointment more comfortable. Caregivers and loved ones are encouraged to share it with their dentist office. This and other useful dental tools are also in the Resources section of this guide.
Finding the right dentist
It is important to find a dentist that works successfully with individuals with autism or is willing to work with them. Your pediatrician, primary care doctor or other providers who support your loved one should be able to recommend one. Or you can look for one in your local area in the Autism Speaks Resource Guide.
If you are unable to find a dentist with enough experience treating patients with autism, you can call and ask dentist offices to see if they are opening to seeing you or your loved one. A good rule of thumb is: if the dentist says yes, that is a good sign they are welcoming of and willing to work with an autistic patient to meet their needs.
Once you have the name of a dentist or a dental practice, call and see if you can make a pre-visit appointment with your loved one. Ask for a tour of the office that includes a visit to the dentist’s chair so they can get comfortable with the environment.
You should also speak with the dentist and dental hygienist and share:
- What time of day works best for your autistic loved one.
- Concerns you or your loved one has about the dentist and what happens during a visit.
- Any sensory issues.
- Challenges that may present during the visit (For instance, tell them if your loved one typically has problems “opening wide” when brushing their teeth or if they bite on their toothbrush.)
You should also find out if the dentist has a Standard Dental Form that you can fill out before your appointment that summarizes your loved one's dental experience, sensory issues, any co-occurring conditions and other information to help the provider get to know them better. If they do not have one, use ours provided in the Resources section of this guide.
Preparing for the exam
Preparation is key to a successful dental visit. One way to prepare is with a Visual Schedule provided in the Resources section of this guide. Giving your loved one the opportunity to see the step-by-step guide of an exam can give them time to process what they will experience and provide them opportunities to ask questions about each step, which can relieve some anxiety. This pairs well with IEC's handout, Understanding Your Dental Visit: A Plain Language Guide to Common Dental Procedures.
Together these resources can serve as a practice guide. For instance, you can have your loved one practice sitting in a reclining chair and then trying each of the following steps:
- Putting their hands on their stomach and relaxing
- Putting their feet out straight
- Opening wide
- Holding their mouth open
- Counting their teeth
You can also purchase many of the instruments used at a dental visit at a drugstore and then show your child how they work like:
- Dental mirror
- Water flosser
- Rubber-tipped gum massager
If you know your loved ones is going to need X-rays, you could even ask your dentist in advance for a set of dental bite wings so that they may practice biting down on them when they need to have x-rays.
“Consistency is key. Commit to taking your child every six months so they get used to the experience. And your provider may be open to having you visit more frequently for a mock appointment.”
- Brooke Horowitz, Autism Speaks Research and Prospect Development
Meeting the dentist and the staff
You may want to schedule a pre-visit consultation the first time you go to the dentist, switch to a new dentist, or if you are transition-aged or an adult, move out of your pediatric dentist office. This would be a good time to share the Standard Dental Form and supply any other experiences you think would help the dentist and hygienist better understand you or your loved one.
“Make the appointment for either first thing in the morning or the first appointment after lunch to limit wait times. Having low wait times is key for a successful dental visit for my son.”
- J-Jaye Hurley, Autism Speaks Autism Response Team
During your tour or ahead of your actual dental appointment:
- See if it is possible for your loved one to see a typical exam room and chair, where x-rays are done and just look around and see the lights and hear the sounds.
- Ask about being present with your loved one or having a support person avaialable during the exam. Except for some cases involving x-rays, both the hygienist and the dentist should be comfortable with you, a trusted adult, or even BCBA therapist being there.
- Talk about how long a typical appointment lasts so your loved one knows what to expect. Also ask about breaks between or check-ins with your loved one during appointments. If necessary, ask to book a longer appointment.
- Make sure it is ok for you or your loved one to have a favorite fidget or sensory tool.
Before you leave for your appointments, you may want to call ahead to see if the dentist is running on time. If they are delayed and you think that your loved may be anxious in the waiting area, you may want to ask the receptionist if you could wait in the car and ask them to call you on your cell phone when the dentist is ready.
After the dentist visit
Most pediatric dentist offices give a goody bag or prize out after each visit. But you may also want to have a reward ready for your loved for a job well done and to encourage them to go again for their next check-up. If you are caring for a transition-aged loved one or you are an adult with autism, you should also plan for self-care afterwards, whether that be a half an hour alone to recharge, or a favorite treat.
After your dental visit, you should also use IEC's My Dental Appointment Reflection, a worksheet to document to what happened during the visit, what worked, what didn't, what went better than planned. This is a useful recall tool to bring out ahead of the next appointment.
Special consideration:
Sedation & protective stabilization
With patience and understanding, many children with autism can sit through a normal dental visit. For some, all they need is experience getting used to going to the dentist. For others, breaking appointments up into shorter visits helps. For example, maybe X-rays are done during one visit and cleaning is done in another. But for those for whom the dentist is too much, protective stabilization and sedation may need to be considered.
“When our son was eligible the local children’s hospital worked out very well as he needed to be put to sleep for major procedures including cavities and they have a lot of experience with special needs.”
- Jeff Rickel, Self-advocate and father of an adult with autism
Protective stabilization
Protective stabilization is an option when the dental patient can’t be persuaded to sit still in the dental chair, according to Dr. Elizabeth Shick, DDS, MPH, clinical associate professor at the University of Colorado's School of Dental Medicine and co-author of Autism Speaks ATN/AIR-P Tool Kit for Dental Professionals.
It is one way to ensure safety for both the patient and the dental staff. This can be as simple as having a parent, caregiver or dental assistant hold the patient’s hands. If this isn’t enough, a wrapping device made from soft cloth may be used to help stabilize the patient’s arms and legs.
It is perfectly appropriate for you to ask the staff if they’ve received training in protective stabilization, sometimes called “medical immobilization.” Many dentists feel comfortable with medical immobilization because it’s the safest way to perform dental procedures when the patient can’t be depended on to hold still.
But it is also important to know that protective stabilization is not right for every autistic person or their parent. You and your child should always be asked first if it is ok to try protective stabilization. If you do try it and your child is in distress with it or you are uncomfortable, it is ok to remove it and discuss alternatives with the dental staff. The goal should always be to build trust with the dentist, not increase anxiety or introduce apprehension.
“…I would like us to find a dental practice in the same office park as [my daughter’s] ABA center and see if they would let the BCBA bring her in for short times to practice. She’s recently gotten used to using a timer on an iPhone and we used it successfully to practice her laying still for an EEG. It worked great! Now granted, an EEG is not invasive like a teeth cleaning is but I would like to see if we can use the experience to develop something similar for basic dental procedures. Another idea is to get a portable iPad floor stand so that we could pair those practice sessions with one of her favorite calming videos.”
- Christa Stevens, JD, MAT, Autism Speaks State Government Affairs Director
Sedation
It is important to note that before dental professionals even offer or administer sedation, most states require that they complete advanced training and licensing. So be sure to ask about your dentist’s qualifications and credentials and ask what precautions they have in place. For instance, your child’s vitals should be monitored the whole time no matter the sedation method used. It is also recommended you first bring your child to their pediatrician for a medical exam and discuss both sedation and alternatives.
Nitrous Oxide. Inhaled through a nose mask, nitrous oxide is a generally safe anti-anxiety medicine. It leads to a state of euphoria, explaining its nickname, 'laughing gas.’ The patient must continue breathing through the nose until the dental procedure is complete. So it’s not a good option for children younger than four or five or anyone who is crying or otherwise breathing through the mouth. In addition, a small minority of patients simply don’t respond to nitrous oxide. For some, it causes nausea, though this rarely lasts for more than a few hours after the appointment.
Conscious Sedation. Conscious sedation involves the use of sedatives to produce a calm, sleepy state without loss of consciousness. Individuals with autism vary widely in how they respond to conscious sedation. Sedatives can have side effects, too. This is why it is a good idea to take your child to the pediatrician when considering sedation. The dentist should also carefully screen your child. They need to rule out respiratory problems, evaluate tonsil size and look for other medical contraindications to make sure your child is a good candidate.
Additionally, during conscious sedation, an appropriately trained assistant should be with your child the whole time and must carefully and continually monitor their vitals.
Typically, the sedative is given as a pill or liquid one hour before the procedure. The most common choices include midazolam (Versed), hydroxyzine pamoate (Vistaril), meperidine (Demerol) or chloral hydrate. Sometimes the dentist may want to use stabilization restraints and supplemental oxygen during the procedure.
General Anesthesia. General anesthesia, which involves loss of consciousness, is a last choice for those who don’t respond to the above options. It must be administered by a dental or medical anesthesiologist or certified registered nurse anesthetist in a hospital or fully equipped healthcare center. General anesthesia brings a number of health risks. Generally, it’s not recommended for dental cleanings or other routine dental procedures.
Additionally, there are likely financial considerations when opting for general anesthesia. It is generally not covered by dental insurance, or if it is, will likely be more expensive than the maximum yearly benefit under most dental plans. This means that parents will be responsible for the balance. It is also not uncommon for the dental office to require full payment for sedation up front. If sedation is going to be needed for every visit, sedation will be a significant yearly expense. In these cases, parents may want to prioritize making the goal of dental care without sedation in a child's applied behavior analysis (ABA) treatment plan. Consultation with a Board Certified Behavior Analyst (BCBA) could be a helpful step toward this.
