Barriers to Dental Care Among Children with ASD

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Hello,

I am a first year dental student at the Stony Brook School of Dental Medicine in New York. I am currently involved in a research study called “Barriers to Dental Care Among Children with Autism Spectrum Disorder”. The main focus of the study is to discover significant barriers within dental care that children with ASD may have or have experienced. We are seeking primary caregivers to participate in a short anonymous survey (links below) in order to address these concerns or barriers. Your participation would help contribute to the future of dental care for this population. As a future dental care provider, this information would be vital to my clinical exposure by bringing forward ways to effectively improve and/or facilitate care to children with ASD.

Your participation would be truly appreciated. Please feel free to share this survey with others. If you have any questions you may contact me by email, [email protected] .

English Version:
http://www.surveymonkey.com/r/access_to_care_survey


Spanish Version:
https://es.surveymonkey.com/r/la_encues ... ado_dental


AutismSpeaks.org Link:
http://www.kintera.org/site/apps/nlnet/ ... t=14394747

Thank You,
Amanda Brijlall

I won't talk about the more obvious stuff, but I well tell you one thing that I think my autism has an effect on, and that's that awful ringing in my head when they use that ultrasonic plaque remover wand. It's not so bad when they use it on my lower jaw, but when they use it on my upper jaw. I feel like my head is being crushed in a vice. that sound that thing makes is just awful.

I'm 50 and have Asperger's syndrome but wasn't diagnosed until middle age. From taking my four children to the dentist for their checkups, fillings, braces, and wisdom teeth extraction, I know that dentist visits today are very different from when I was a child, but the basic principal behind my bad experiences can still be relevant. I'm happy to say that my four NT children never had a bad experience with the dentist. However, I'll give you a quick overview of my bad experiences, which caused me to avoid the dentist until I absolutely have to go, to this day.

I had very bad teeth and wasn't taken to the dentist until I was about ten years old, at which time I had 17 cavities. My mother nor grandmother never cared much for teaching me hygiene, and this was the result of it. The dentist and his nurse shamed me because of this and refused to believe me when I told them that I wasn't told to brush my teeth and didn't even have a toothbrush, and they believed my grandmother who out of embarrassment told them I was making that up. I don't blame them for believing my grandmother, I would believe the adult if I were in that situation and was told such a story too. I'm sure that unlike in the early 70's, today's dentists know better than to shame a child even though they would most likely believe the adult, but the things they said to me has made me ridiculously embarrassed of my teeth to this day. It continued with every visit, for years. I was told over and over how having to get the fillings was my fault, etc. I'm aware that my embarrassment is completely out of proportion, as were their statements to me, but the feeling is still there. I was very sensitive to criticism, and honestly the things they said to me would upset an adult with the tough skin that I now have about almost everything. While I know that no dentist would talk to a child like that now, I'd still caution dentists and staff to not come across as judgmental about cavities and lack of brushing/flossing, even when it's within normal limits, as we can be overly sensitive to any perceived insult, and that shame can stay with us for life even when we are adults and know we have no actual reason to feel that way.

I was also very afraid of pain and the unknown aspects of going to the dentist. Nothing was explained to me and I felt they were rough with me, even though I had nothing to compare it to, and I cannot fathom even a cleaning that isn't painful, because I expect pain even though I've had many painless experiences in adulthood. The feeling of helplessness compounds any pain that's felt and when I went to the second dentist I ever saw, as a teenager, I was shocked that I could actually lift my hand as he said to do and he would stop. I know that my kids' dentists have always had something like that. They also allowed a parent to come back with the child, and after the first few times, my kids happily went back there alone. I know that I had control issues as a child, and still do somewhat, and feeling that I have no control and no idea of what will happen increases my anxiety tenfold. I'd also suggest periodic rests during the treatment to check in with the ASD child, asking him how he's doing, telling him how much longer it will be and what kind of progress you have made. I know that would have helped me immensely.

I'll take a look at your survey and see if I can contribute anything, if you want opinions of adults on the spectrum as well as parents of kids on the spectrum.

_________________
I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com

I remember when I was about 4 years old, I went to get fillings put in, and in order to do so, they had to take me to the hospital and put me under, since I was too squirmy for the dentist's chair. I had no idea what was going on, and the experience scared the crap out of me. I distinctly remember lying in a hospital bed, throwing up, having a hard time drinking my raspberry juice, all while one of the crappy Land Before Time sequels was playing on a TV in front of me. What a messed up experience.

I have really crappy teeth but it was MUCH worse with my baby teeth. I had to have major work done on them at the hospital and I still remember the dentist was a complete and utter a*****e and would yell at me repeatedly to "stop crying".... at age 6. I strongly suspect this is why I absolutely hated the dentist as a child. If my mother didn't practically force me to go and sit with me I would have never gone in a million years.

Dental visits were a real problem for me. I have never had any tooth repaired till age of 10. I even took out all my baby tooths all by myself without anybody else help. I remember they were really destroyed, especially the back ones. I was taking out the back ones in a lot of gray pieces instead of a whole white tooth.

However since age of 9 or so I was using braces and despite hating the print being taken and the braces customized (as well as sleeping in the braces and taking them off in the morning - it hurt) I could stand it. I got it all explained logically and the orthodontist was patient with me and explained everything she was doing so while still hating the sensations I was at least prepared for them and knew the reasons.

But then I broke my front tooth in an accident and it had to be fixed as soon as possible. My "dentists adventure" started.

First one (close to my home, with a house cabinet that didn't look professional to me) looked at my tooth, said it cannot be "glued" (which i tried to convince him to, I even brought the broken part with me) and started preparing his torture tools. I escaped from the cabinet, refusing to go back.

We went to another one a few days later. I didn't know either the city nor the cabinet. I was in a strange place (child cabinet, lots of toys around), in weird hour(late evening), after 2 hours ride. But parents explained to me that I have to sit still and let the dentist do my job or else I am going to end up without a front tooth and I will look like a bandit and that the dentist is a kids dentist and she knows what she is doing so I must calm down.
So I tried my best.
But then the dentist started drilling. I felt a strong pain. Doctor said I cannot feel any pain because the tooth is dead and I am under anesthesia - and continued drilling. I started yelling and trying to break free. My parents and dentist assistant tried to hold me but it didn't help. I managed to escape from the office again.

Afterwards I glued some white plasticine (yes, the toy one...) to the tooth and refused to go to any dentist ever again.

A few weeks later my parents found a special, really expensive adults dentist. They managed to convince me to go there, just to see how the tooth looks like inside (the doctor had roentgen equipment). I agreed: "But only photo, no touching". Mostly because the office was in the same building as the orthodontist so I knew the surroundings.

We went there. Dentist took the photo and said it is possible that I felt pain when the last dentist started drilling because the tooth is not fully dead yet. After finally hearing an adult agreeing with me that I really could feel pain when I did (parents didn't believe me and kept telling me I just panicked just like I always do in a doctors office) I agreed for the dentist to try fixing my tooth.

It was still unpleasant but he was really careful, he looked at the photo all the time and was telling me "now it can hurt a bit" when the pain was supposed to occur. And it did but it wasn't the strong pain I felt in the kids dentist office. I could stand it, especially since I knew it coming. He was telling me of any other sensation coming too and how long it can last. He was telling me what he is doing all the time and answering to slightest signals of discomfort, I didn't have to yell "au!" for him to know I am hurt. The office also had some radio on so I was not focusing so much on the sound of drill. My tooth was successfully fixed.

About 2 years later I got a toothache so I told my mom about that. We went to that dentist from before but the cabinet was closed due to late hour. So my mom took me to her trusted dentist. I remember I found it weird to see a dentist office in an apartment house but after entering the office and realizing it is really a dentist office, not a apartment with a room office I accepted it.

I refused to sit on the chair there though at first so the dentist said she will fix one of my mom tooths instead (we had an hour of time booked) and I can watch her from behind as long as I don't touch anything. I was asking a lot of questions and the dentist was answering almost all of them. Fixing my moms tooth took like 15 mins (it was just a small dot) and she didn't seem in pain so when my mom got up from the chair and was about to pay I said I can give it a try too and sat on the chair.

As soon as the dentist got to me I realized I can see her job of my spot even better than I did when I was watching from the back. I couldn't clearly see the inside of mouth back then because I had to stay out of touch range but now I could because... dentist was wearing reflective glasses. I could see everything she was doing in my mouth and I already knew most of the tools she used because she explained them to me. So while was still jumping of fear every time she was opening her drawer to take a tool out I was calming down as soon as I could see what it is. Except a few times (my tooth was different from moms so she needed some additional tools), but she explained new tools to me before putting them into my mouth so it was fine.

I can't say it didn't hurt at all but since I could see what she is doing and what tool she is using I learned to predict the sensations pretty fast. There are a few tools that make similar sounds (such as different drills and polishers) but cause different sensations. By knowing the tool and seeing the tool about to touch my tooth I knew what is the sensation I am about to feel right before I could feel it. So I was prepared.
And there was a radio on as well. So I didn't focus on the drill sounds too much.

For next a few months I was visiting the dentist quite often. She fixed all my tooths that required repairing and even extracted a tooth that was impossible to repair (a miracle, it required the deep kind of anesthesia that is applied using syringes and I hate syringes).
Most of them were without any anesthesia, I didn't need it. I preferred short, predictable, controllable pain over the felling that even slight anesthesia leaves for hours.
It became an unpleasant routine. I was getting there every week. I wanted to have my tooths fixed while I was used to the dentist office because I already knew it won't be so easy once it stops being a routine.

I avoided all the check up visits since all my tooths were repaired though. I don't want the torture again. It was fine while it was a weekly routine but a once a half of year risk of a tooth being unexpectedly told "to be fixed" is too much for me. I will go to a dentist office when I feel pain again and then the dentist can fix all my tooths on weekly basis till they are all fixed.

Another adult I'm afraid (maybe try posting to the parents forum?) - if nothing else it keeps your post near the top of the list!

I had largely positive experiences as a kid. Just a few orthodontic mishaps - nearly threw up when the shape mould was taken, didn't communicate the pain after having the braces adjusted - I has a scar to this day because cutting the wire short was forgotten on one wide.

The only thing I would say, is that written booklets on treatment steps, procedures and prevention were key to me. On my first visit to the orthodontist, I read all the booklets in the waiting room but couldn't find any pertaining to my treatment.

I mentioned it and a few visits later they'd designed and printed them!

For younger kids, or less able to read maybe you could write social stories for your most common practices, complete with photos from your equipment. You could offer this to parents to read in their own time, and have ready in the treatment room.

Thank you so much for taking the time out to share your experiences!

Although I have not had any clinical experiences yet, reading your stories provide me with a better outlook on how to treat special need patients. I truly sympathize with those of you who had awful experiences with your dentist. I can only imagine what that must have been like for you as a child. If you are still afraid of seeing the dentist, please let the dentist know how you feel or what makes you comfortable, so that they may provide you with an easy going and positive experience. I am also glad to hear the positive experiences that some of you had. It is good to hear from patients what dentists are doing wrong and right because feedback is very important.
Today, dentistry has come a long way. There have been many advancements within dental technology, materials and the way care is provided, in order to make your experience with your dentist a pleasant one. Unfortunately, many dentists have not treated patients with special needs and sometimes do not know what to do. I hope this research study can provide dentists with the knowledge and ways on how to effectively care for patients with Autism Spectrum Disorder or other special needs. Here at Stony Brook Dental Medicine we have a Special Needs Clinic, where we see patients once a week. I truly believe being involved in this research study will put me at an advantage over others because I have heard your stories and will definitely have an idea of how my patient may feel within my dental chair.

Thank you once again for sharing your experiences

Also, if you are involved or a member of a local Autism chapter, please spread the word about this research study.



All the best,
Amanda

I know when I was three, and I was taken to my first dentist... I refused to open my mouth. I ended up having to see a pediatric dentist. At the time, I had no idea I was disabled, let alone even autistic or had ADHD. I've always been terrified of dentists ever since I was little to the point where I have to be put to sleep in order for anything to be done too. I actually just recently had dental surgery done and had all my teeth pulled out. This was because they were very bad due to poor brushing habits as a child.

Could you put together a survey for adults too?

I am currently in a dental situation now, I can mostly get throught cleanings ok, however I have had severe tooth pain that has gone un treated outside of home medication because thee are no dentists who take my insurance and are able to handle my needs which is a bare minimum of laughing gas and most idealy General amastesia for the work I am going to need which is fillings and possibly a root canal.

No one knew, that I was on the spectrum (only that there was "something"), but I grew up seeing the same dentist from age 6 to 42, when he died from bone cancer, poor man.
He didn´t know, why I was so sensitive in the mouth and so frightened of the pain, but he respected it and did a lot to prepare me the best he could and even allowed for extra doses of pain killer (I didn´t die from it ) , - and he allways worked as softly, as he possibly could and gave me a pause, when I needed it.
Sadly he didn´t allow me braces, because he thought, that "nature always knows best" Correction could have saved me a lot of wear and facial pains from a "locked" bite.
Apart from that: Exellent dentist, who would always respect the sensory experience of any patient.