Autistic at the Dentist Part 2: Q & A with Dr. N!
I’m so excited to bring you today’s post! My absolutely amazing dentist, Dr. N, has answered some of the most common questions and problems I’ve heard from autistic and ND folks and it’s quite enlightening. I hope this helps you with any issues you have surrounding dentistry and oral care. So, without further ado, let’s get to the Q & A!
*The original questions are in bold, Dr. N’s responses are in regular font, and any notes I’ve added are in italics.*
CN: There is an image of teeth in the answer to Question 5, just in case that squicks anyone out
1. I’d like to start with the most common problem I hear from autistic people and parents of autistic kids. Nearly all oral hygiene products are minty and that can be really overwhelming for some people, to the point they can’t tolerate it. I use alcohol-free mouthwash, but it still burns from the menthol in it, and some people are much more sensitive to mint and cinnamon flavorings than I am. But when you look for non-mint flavored products, most of what you find is children’s training toothpaste and the “natural” fluoride-free stuff. Can you recommend any toothpaste and/or mouthwash that isn’t mint or cinnamon flavored but has the right ingredients to keep our teeth strong and healthy?
You’re definitely correct that non-mint flavored products are usually children’s training toothpaste and/or fluoride-free stuff. When patients ask me what toothpaste I recommend, I always say, “There is not a certain toothpaste that I recommend the most, but there are a few things that are a must when choosing toothpaste.
1. Approved/accepted by the American Dental Association
2. Has fluoride
3. This is the most important one – it tastes good to you.
If it tastes good to you, you’re much more likely to use it!
My sister in law is also a dentist, and she has a 2 year old son. A while ago, she told me that Tom’s makes a strawberry flavored toothpaste! It’s accepted by the ADA, it has fluoride (actually it has the same concentration of fluoride as your typical common toothpastes that adults use), AND it tastes good!!! Winner winner use toothpaste after dinner!!
Listerine makes different flavors! I’ve seen grapefruit rose, aloe and cucumber, coconut and lime.
2. A follow-up to that: Are there good alternatives to supermarket toothpaste? Nanohydroxyapatite toothpaste like Carifree often comes in non-minty flavors, is that a good option and do you have any brands you recommend? How about the old-fashioned idea of brushing with plain baking soda?
Carifree seems to not be a bad option, and it appears to have fluoride options. However, Carifree does not seem to be accepted by the ADA, or at least not yet. Here is a website to search if products are accepted by the ADA.
Brushing with baking soda is also not approved by the ADA, and it doesn’t have the fluoride we need to keep our teeth strong!
Maybe with our powers combined…. We can create something! This reminds me of Captain Planet!
With your powers combined I am Captain Planet!
Captain Planet, he’s our hero,
Gonna take pollution down to zero,
He’s our powers magnified,
And he’s fighting on the planet’s side
Ok so here’s my version:
With your powers combined I am Captain Dentist!
Captain Dentist, she’s our hero,
Gonna take decay down to zero,
She’s our powers, magnified,
And she’s fighting on the patient’s side
(Yes, y’all, this is my dentist. She’s kind of a dork and that’s part of why I love her! Who knew dentists were human, too?)
3. Many autistic people have difficulty with the act of brushing their teeth. I had trouble learning to brush as a child, despite using disclosing tablets and everything, because I lack some fine motor control – I just couldn’t get the brush to do what it needed to do. Now I use a sonic toothbrush because it helps do some of the work for me. Other autistic people can’t stand the feeling of brushing, it feels more like a file against their teeth. Some have amplified gag reflexes or oral aversions so strong that they can’t tolerate anything in their mouths. Do you have any suggestions to make cleaning teeth easier/more tolerable in these cases?
Awesome job using the Sonicare! I am 100% team Sonicare. It’s super effective. When you start looking into the cheaper brands of electric toothbrushes, I think they vibrate way too much. It feels like your brain is rattling in your skull, and I don’t think anyone would like that feeling!
I think there’s a lot of people out there who don’t actually know how to brush properly. Learn from your local friendly hygienist or dentist, and then practice, practice, practice!
There are some manual and electric toothbrushes with smaller bristle heads that help you maneuver it more easily, and because it’s smaller, I think that’ll also help prevent gag reflexes!
(Grace interrupting here – I’ve bought Sonicare replacement heads through Groupon and they are definitely smaller than the ones I’ve seen in stores and they’re much easier for me to handle.)
Sure, sometimes it just hurts to brush your teeth and gums, which can really discourage you from not wanting to do it! The reason why it can be tender is because the gums are irritated and inflamed from not keeping up with oral hygiene (home care and professional dental cleanings.) Once the inflammation (and source of inflammation) is controlled, brushing and flossing is much easier and more pleasant! This makes me wonder if this is why some autistic people “can’t stand the feeling of brushing,” because maybe it just hurts. Stay on top of good oral hygiene, be patient, and we should be good to go!
The age for children to be able to brush independently can be up to age 9, and that’s ok! I love when parents tell me they always double check on their kids’ brushing technique.
As far as the feeling of “file against their teeth,” try extra soft toothbrushes. Be sure you stick to only an extra soft or soft. Anything above that is too abrasive and can cause your gums to recede, which doesn’t grow back!
To help prevent gag reflexes, try brushing with no toothpaste and just a little water. Rinse the tooth brush before moving to the other side and before moving to the other arch. I think the taste and the foaming of toothpaste can cause gag reflexes. It’s possible that people are using too much toothpaste. You only really need a pea size amount, yes even for adults. If that’s still too much foaminess, just a slight smear of toothpaste. Try brushing without any toothpaste then gradually try using a little toothpaste.
This can be an option- brush with just a little water and no toothpaste, then put some toothpaste on your finger and smear it on all the surfaces of your teeth. Let that fluoride sit on your teeth overnight. I actually recommend that for my patients who are cavity prone.
(I never knew this was a thing you could do! I assume Dr. N hasn’t suggested this to me because I haven’t had an actual cleaning and exam with her just yet, but I expect I’ll hear it then. I wish someone had recommended it when I was younger.)
If you can’t 100% can’t tolerate a toothbrush, possibly try a water pik to blast off as much plaque as you can. If that isn’t an option, maybe put a washcloth over your finger and try scrubbing off some plaque.
4. Follow-up here: Can you offer an opinion on mouthpiece toothbrushes like Autobrush or 360SonicBrush? These seem like a great idea, but I can’t help wondering if there’s a catch. (Like the fact that obviously you couldn’t avoid temporary dental work using these – but maybe they’re good when that’s not an issue, or perhaps they’re a “better than nothing” option?)
I’ve seen those! Truthfully, it really doesn’t seem like a bad idea… of course nothing is better than traditional flossing and brushing, but if this happens to be the absolute only thing you use or you don’t use anything at all, I say try it. I don’t know how tough the bristles are, so be sure it’s gentle on the gums. This also seems to be more difficult to clean than a regular toothbrush. It also seems like such a mouthful, therefore probably messy…kudos to anyone who can tolerate that!
You heard it here, folks! A dentist says that if these make oral care easier and more accessible for you, go for it! Just make sure it doesn’t hurt your gums.
5. Flossing was always the worst for me as a kid. It always hurt (I was probably doing it wrong – that lack of fine motor control) and it made me gag. Now I only use a Waterpik, which is at least doing something, even if I still have a little issue controlling that as well. What are some other options for people who can’t tolerate flossing?
This is a toughie… because nothing can actually replace flossing. Good ol’ mechanical string flossing can’t be beat. When you place floss in between your teeth, you can create a C shape (hugging the tooth in front of the floss and behind the floss) which is the most effective way to remove plaque in between the teeth that brushing or anything else can’t reach.
This is what I recommend to patients who struggle with flossing:
Listerine makes it! It’s essentially like floss pickers but has this long handle that makes it easy to use and reach in the back! You can’t make the C shape like regular floss, but this is definitely a better than nothing situation. This is good for the gaggers too!
Waterpik is great, but again, you just can’t replace the regular floss. I tell patients that a waterpik is good addition to their oral hygiene routine, but not a replacement. Water pik is also great for patients with braces! Patients love using it in between meals to flush everything out. But I still recommend them to floss every night.
(When I can tolerate putting my hands in my mouth, I find dental *tape* to be much easier to handle than normal floss. It’s more like a narrow ribbon and I can actually get that C-shape Dr. N mentions, so instead of just scraping my teeth with floss it feels like polishing the edges of my teeth. It can be hard to find, but it’s another option to try.)
6. We all know that the full brush-floss (or irrigate) plus germ-killing mouthwash routine twice a day is the ideal. But lots of autistic people have concurrent disabilities ranging from executive dysfunction, anxiety, and depression to chronic pain, chronic fatigue, and even joint problems that mean the full routine twice a day simply isn’t possible. And with chronic illnesses, our functioning can vary widely by the day. Could you give us a breakdown of what you would consider a bare minimum oral care routine (and I do mean *bare minimum*, like for days you can’t get out of bed), then maybe a nice mid-range for days when we’re ok but not great, and a good regular routine for our usual well-functioning days?
Alternatively, if this is easier to answer – what’s the first thing you would drop from an oral care routine on those days when you just can’t, and what’s the most important thing that you should do every day if nothing else? Do you have any standard advice you give to people with disabilities who have trouble doing a full oral care routine?
Wow you’re good at these tough questions! Haha Brushing twice a day and flossing every night is recommended and neither of those things are really “optional.” But I totally understand some patients have limitations! I’d say brushing does the most work however it doesn’t get in between the teeth. This isn’t backed up by any particular research, but after discussing with a few colleagues, I’d say if you can’t brush twice a day, at least brush at night time. Salivary flow is a natural mechanism to help flush plaque and bacteria off of your teeth, however that slows down at night. Food and plaque sitting on your teeth all hours of the night can cause cavities, gingivitis, and could lead to gum disease. Brush off those sugar bugs before catching z’s!
Try to aim to floss a couple of times a week, even if it means using floss pickers laying in your bed. It’s great armamentarium for your night stand! Hehe
7. Autistic sensory issues can vary widely, as well. My personal sensory hell is metal against my teeth. Other autistic or ND people might hate the feeling of being numb, have a phobia of shots, gag at all the various tastes, or perhaps they can’t tolerate being laid back in the chair or having instruments in their mouths. (This list is by no means exhaustive, but if I listed all the possible sensory problems involved with dentistry, we’d be here for a week.) How would you advise autistic adults to explain their sensory issues to a dentist and ask for accommodations in a way that will be taken seriously? Provided that a parent knows their autistic child’s exact sensory issues (kids can’t always communicate it well), how should they broach the subject with their dentist?
I can’t speak for all dentists, but I know my main thing when it comes to meeting new patients and getting them to trust me is listening. I make sure I am sitting eye level with the patient or with the parent and focus on what my patients/parents have to say. I’ve been practicing for 5 years, and one major thing I learned about patients is that they want to be heard.
I would say when meeting a new dentist, be straightforward. Tell the dentist you’re looking for a dentist who can meet your needs. Make them aware of your main concerns and things you don’t like and how they can accommodate those concerns. If they can’t, that’s ok! They may know a fellow colleague that can! We are here to treat patients, not just their teeth. General dentists can choose their patient population. I treat a fairly wide variety of patients, preteens to geriatric patients. I typically refer the youngins to our pediatric office (general dentists typically aren’t licensed to sedate the kiddos). My husband is also a dentist, and he sees tons of pediatric patients! He’s a kid at heart though, and they love him! Get a feel for your dentist when meeting him/her and ask what kind of patients they typically see. You’ll get a good idea of how they’ll be and see if they’re the right fit for you or your kids! Never feel like you’ll offend us if we aren’t right for you. It’s totally ok! We want what’s best for our patients! If you have several teeth that need to be worked on, maybe just get your new dentist to do one or two fillings first and see how it goes. Ease into it so it’s not overwhelming.
I have a couple of handful of autistic and ND patients of a wide range, but there is one thing in common – they are all such awesome people. They range from super easy going to some barely let me look in their mouth. Of that spectrum, some don’t need any type of sedation. A few need nitrous oxide gas, and a couple need to be IV sedated with our nurse anesthetist. Generally, people/parents know what they need, and all sedation options are discussed.
(I typically take an extra dose of my anxiety meds if I’m going to the dentist, but I don’t get any other sedation anymore. As a kid, I always had nitrous oxide.)
8. A follow-up on the issue of those who can’t tolerate feeling numb – are there options for that? I’ve read about anesthetic reversal shots, but I’ve never known any office that offered them. Are they common and do they work?
Unfortunately, no matter what kind of sedation we do whether it’s nitrous or IV sedation, we still have to numb. If you’re orally sedated or IV sedated, after the procedure, usually you just go home and go to sleep, and the local anesthetic/numbing will be gone by the time you wake up.
Correct, most offices (including mine) typically do not carry reversal injections. We do have short acting anesthetic, but I don’t think it’s wise to use that because we want to ensure you’re profoundly numb during dental procedures. We don’t want that stuff wearing off in the middle of anything! I know it’s a weird feeling being numb, but I think it’s safe to say you’d rather have that tingling feeling than to feel discomfort during a procedure.
There is a reversal agent called Oraverse, which helps reduce the recovery time by half. Research shows that it works well. It definitely wouldn’t hurt to ask your dentist if they carry it!
9. A surprising number of autistic and otherwise ND people have a history of painful dentistry/dental trauma because of a dentist not believing that they needed more anesthetic (it’s pretty common for us to need more than the average person). For those of us who burn through anesthetic or seem to be somewhat immune to it, are there other options to ensure comfort? Does twilight sedation or nitrous oxide help with numbing or are they just for relaxation? How can people explain this issue to a dentist to prevent painful treatment in the future?
Anxiety/nervousness can affect how well we achieve profound anesthesia. Nitrous and sedation are to help you relax, which ultimately can help you stay numb longer. Sometimes I still have to add more anesthetic here and there. If I know upfront that a certain patient is particularly difficult to get numb, I usually use the stronger anesthetic and give more than normal. Give your dentist a heads up that you’re difficult to numb before they get started! They’ll be more than happy to load you up on the good anesthetic and a lot of it! If your appointment is long, there is a long lasting anesthetic I like administering. It works well! I also ask my staff to add a sticky note to their charts stating “difficult to get numb” just in case we forget or if another dentist or hygienist needs to administer it. If you only want your original dentist to get you numb, I’ll put that in the chart too! I will never mind doing it. I am here for you!
(I get numb pretty easily, but I burn through the anesthetic fast and my teeth specifically come back very quickly, even if my soft tissues stay numb for hours. So at the first hint of feeling anything during dental work, even if it’s not yet pain, I ask for a boost of anesthetic! )
10. Many of us who struggle with oral hygiene grew up being lectured and threatened about our teeth and about dental work in general (because not all dentists are as kind as you). When we’ve been told since childhood that a painful root canal would be the ultimate – and deserved – punishment for not taking care of our teeth, needing major work as an adult can feel like the end of the world or some kind of personal failure. What would you tell adults who do need major work to restore their oral health but have this kind of fear and block about it?
I occasionally do get those patients who end up needing a ton of dental work, and that can be overwhelming for anyone! I wish I could just snap my fingers and have it all done, but a complex treatment plan can’t be done in one day. I always tell any of my patients that I understand this is a lot of info but we will break up the treatment plan in multiple visits. It’ll be done one step at a time, starting with their main concern and what’s bothering them the most. As a dental health care provider, my goal is to treat patients to prevent tooth aches before it’s too late. There are different levels of cavities. Not all cavities are bothersome. Some smaller/medium size cavities can be fixed with fillings. Sometimes the larger ones can’t hold a filling and need a crown, and then there are cavities that need root canals or possibly extractions. I encourage patients not to wait until their cavities hurt, because at that point sometimes a root canal or extraction may be needed. I try to treat teeth when they are at the stage of only needing a filling. It’s the least invasive, less chair time, reduces the risk of discomfort, and it’s cheaper for the patient! It’s a win all around! Dentists may not have the best reputation, but there are a lot of good dentists out there! I promise! We are here to help, not judge. The goal is to improve and maintain good oral health. I think if the patient shows the dentist he/she is motivated and willing to be compliant, that’ll send positive vibes to the dentist, and it’ll be a team effort!
(I just want to pull out this bit: “We are here to help, not judge.” I know I never had a dentist that made me feel like that until I found Dr. N, so I know a lot of you may not believe that there are dentists who work without judgement. But they do exist and they will take great care of you!
Also, I recently had an issue where I had some significant tooth pain and thought I needed a root canal and I did feel some shame about it. But Dr. N and the endodontist she sent me to both treated it as just a thing that happens sometimes and never suggested that it was my fault or anything like that. It turned out that I didn’t need a root canal, but if I ever do, I know it’s not a punishment.)
11. That same struggle/threat cycle that many of us grew up with has made many autistic and ND adults not only afraid of dentists and dental treatment, but it made us associate dentistry with shame, humiliation, and punishment. We may have tried our very best to take care of our teeth, only to be berated and told that we would have to be put through pain because we didn’t do it right. (This is my own experience, as well as lots of other people I know.) What would you say to those people about building a better relationship with a dentist and how to find a dentist who will treat them with care and respect?
Make sure your dentist hears you out. See how well they listen to you about your issues and concerns and see how well they accommodate you. Remember you can always switch to another dentist if need be, no harm, no foul.
If you don’t have a dentist yet, ask your family and friends! If you’re new to a city, ask people at work or church. My favorite way of getting new patients is word of mouth! You really can’t beat that. If someone recommends a caring and respectful dentist, when you meet that dentist, say that to them. If that’s their reputation, they want to hear that and not disappoint. You have now set the standards, and they won’t want to let you down!
Basic psychology – I think if a new patient showed up to my husband’s dental office and said “My friend recommended you to me and said you’re a funny guy!” I think my husband would go out of his way to tell him/her more jokes!
(Like I said in my earlier post – ask anyone you know with a lot of dental work! Anybody who sees that much of their dentist is bound to have good reviews and will probably be eager to share!)
12. Lastly, is there anything I haven’t touched on that you would like autistic/ND people to know about taking care of their teeth within their capabilities or about working with their dentist to maintain their oral health?
Truthfully I think the best dentistry is preventative dentistry. It’s just best for everyone all around. Go to the dentist regularly, which is every six months for routine cleaning and exam, and try to prevent the need for dental work. Ultimately, it’s less visits, less drilling and instruments in your mouth, helps keep your gums and teeth healthy, which helps prevent toothaches!
I think bringing comfortable sunglasses to your appointment can help with the bright lights in your eyes, bringing headphones and listening to your favorite music can help make your visit more pleasant and help dull the sounds of instruments in your mouth.
Communicate with your dentist if you like to be aware of each step that they are doing before they do it. Some patients don’t want to know anything at all. Tell your dentist what you prefer!
(Dr. N and her assistant always let me know what they’re doing, even just giving me a heads up before they spray any water or air on a tooth. I’ve had a ton of dental work and I pretty much know the process for everything up to a crown, but keeping me informed helps me know how far along we are and how much longer there is to go so I don’t get into that “this will last forever” headspace.)
Well, there you have it, friends. Dentists really are human, and funny, and caring, and they really don’t want to hurt you. (Ok, I’ve known a few who were kinda sadistic, but I think they’re all aging out of the profession.)
I think the biggest lessons to take from Dr. N’s advice are: 1) Speak up! Tell your dentist what you can/can’t handle, and how they can make dentistry more accessible and tolerable for you. And 2) Doing something is better than doing nothing, and doing something regularly is better than doing something sporadically. Do what you can – every little bit helps. I hope you got some help and encouragement from this.
What’s the best advice you ever got from a dentist? How did you find a dentist that you trust and like? My therapist recommended Dr. N’s practice but I just got her by luck of the draw and I consider myself very lucky indeed! What accommodations do you ask for from your dentist? What workarounds do you use that make oral hygiene accessible for you?