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It’s Time for the Dentist!

What feelings does this title bring to you? I can tell you that just writing about the dentist brought up all the anxiety-induced emotions that having a loved one with autism spectrum disorder, I/DD, and/or anxiety can bring. I (Kim) vividly remember my three-year-old son needing to have his blood drawn. It took a papoose holder and three adults to hold him down. It was one of the worst few minutes of our lives, to say the least. After that experience, the idea of going to the dentist seemed like an impossibility. We were dealing with so much else in figuring out how to navigate autism that this seemed like one more insurmountable obstacle that I just did not have the energy to face.

Judy’s early experience taking her daughter, Adele, for medical visits was very similar to mine. Judy says, “My daughter was given a diagnosis of global developmental delay, including sensory-neuro hearing loss at 80% at the age of 10 months, then a subsequent diagnosis of severe autism at the age of three years old. One of her many issues at that time was sensory issues which caused her to be defensive against things such as hair and teeth brushing.”

So why add one more challenge to the ones we were already facing? Ultimately, oral health care and good oral hygiene are too important to ignore.

As a Licensed Practical Nurse (LPN), Judy knew only too well just how important it was to not put off the dental visit. She knew that the first dental visit should be by 12 months or within the first 6 months of the first tooth coming in.

What the research says:

  • Tooth decay is one of the most common chronic conditions of childhood. Individuals with intellectual and developmental disabilities (I/DD) have higher levels of dental plaque, more untreated decay, more gum disease, fewer filled teeth, and more missing teeth than their counterparts without I/DD. Additionally, adolescents with I/DD have more difficulty obtaining oral health services than their siblings without I/DD. (source: Zhou N, Ming Wong H, Feng Wen Y, McGarth C. Oral health status of children and adolescents with intellectual disabilities: a systematic review and meta-analysis. Dev Med Child Neurol. 2017; 59(10): 1019-1026. doi: 10.1111/dmcn.13486)
  • The Centers for Disease Control and Prevention state that tooth decay is the most common chronic conditions of childhood. Poor oral health can have a detrimental effect on children’s quality of life, their performance at school, and their success later in life.

 

Fast forward to today. Both of our children are adults. Judy’s daughter Adele is 39 years old and my son Trevor is 25 years old. Adele and Trevor have developed the tolerance to have successful visits to the dentist and are currently experiencing good oral health. If you had asked either of us in those early years if this were possible, we would emphatically have said, “no way.”

So, how did we get there?

Here are a number of strategies that we used for Adele and Trevor that may help your loved one(s) as well:

  • Start early with dental care. Both of our children were receiving Occupational Therapy. The first step was tolerating others touching their mouth. One way to practice is running a gloved finger across the gums for just a few seconds.
  • Visiting the dental office while only staff was present. Many dentists are open to allowing visits prior to the office opening or shortly after closing. Ask!
  • We took pictures and created a book of what our children/adult would see when they went for their tour. This helped to alleviate a bit of the angst of going somewhere they had not been to before.
  • Practice with social stories what will happen. Review those expectations ahead of time so the child/adult doesn’t get too overwhelmed. We have created social narratives to help prepare the child/adult.
  • Have your child sit on your lap while they look at their teeth. This method worked well for us both during the younger years.
  • Educate staff about your child/adult. There are a number of possible forms available on the internet to help gather this information. Here is one example that is specific to autism.
  • Model expectations for your child if their understanding is limited. If they see you sitting, smiling, and allowing the dentist to look in your mouth, they may be more willing to allow this to happen to them.
  • Be upfront with the staff about what behaviors they may see, as well as triggers that may cause an outburst or behaviors.
  • Ask if cleanings can be done more frequently. Adele can’t tolerate having her whole mouth cleaned in one visit, so the dentist she sees now has her come every 3 months. Trevor went every 4 months and just moved to every 6 months.
  • Early on Trevor could only tolerate the hygienist “scaling” (removal of plaque and tartar) his teeth for 10 minutes while I sang the alphabet song (yes, I sang it very slowly). Your loved one may only be able to sit in the dental chair for 2 minutes. Whatever length of time they can tolerate is a step in the right direction. Setting reasonable expectations not only helps your child/adult but the dental staff as well.
  • Be sure to ask the hygienist the best way to help your child clean their teeth between visits. We have a social narrative to aid in explaining the steps of toothbrushing.
  • You may want to find a pediatric dentist who specializes in children with special needs. Ask if they offer a pre-meeting consultation to discuss your loved one’s needs.
  • Ask if there are “special times” for quieter appointments. Many do offer this for their patients with special needs.
  • START EARLY and be CONSISTENT!

 

Perspective from adults with autism

Many of our loved ones may not be able to fully communicate what is making them feel angst or what may bring them comfort during their dental visit. I know this is true for both Adele and Trevor. So we reached out to a couple of our adult friends with autism who shared some tips on creating a positive relationship with a dentist. This is what they had to say:

  • “I didn’t like the dentist someone found for me because the location and design of the office made it difficult for me to stay calm. I was able to explore additional options with my staff and found a dentist that explained things to me in a way that I could understand. I liked that they had TVs to look at. Helps me concentrate on something else which made me comfortable.”

 

  • “I prefer to have a TV to look at with the subtitles on as it helps me have somewhere to look. I do not like looking at someone’s face for such a long time. I like a dentist that is close to my house. I appreciate them being considerate of my questions without judging. Do not talk too much during the cleaning, I do not know how to react to this. Do not attack my poor hygiene but have a way to gently remind me how I can do better. Sensory issues make using an electric toothbrush challenging because it tickles my lip but I am learning to tolerate. I do not like flossing, so hard to hold, so I prefer the floss picker even though I am aware that it is not best. A timer is very helpful too.”

 

Resources

From ASNC:

Autism and Health toolkit

Social Narratives

Autism Resource Specialists can connect you to local providers and resources

Our upcoming webinar: Supporting Patients with Autism: A Webinar for Dental Health Professionals

 

Other Resources:

NC DHHS – Children and Youth with Special Health Care Needs

NC DHHS – Finding the Right Dental Home for Your Child or Youth with Special Needs (pdf)

Centers for Medicare & Medicaid Services – Dental Care for Children with Special Needs

Centers for Medicare & Medicaid Services – List of NC Medicaid and Health Choice Dental Providers

NC DHHS – Safety Net Dental Clinics (dental facilities for low-income families or individuals)

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