Autism and Our First Toothache

Amy Kelly is the Director of Family Supports and Services for Devereux Pennsylvania’s Community Services division. She recently shared a story about her daughter’s first toothache.

As any of you who have heard me speak about my daughter Annie in one of my family trainings knows, I often talk about the ‘silver linings’ of autism… my saying before the movie even came out this year! Since last April, Autism Awareness Month, once again our year has proven to be nothing short of small everyday miracles and plenty of challenges. Annie is now 11 years old, and her brothers Danny and Ryan are 12 and 9. Annie can now say “Rynan”, and waits for him every day after his 3rd grade school day to give him a hug and kiss. This is new since last year, and a very big deal. Also what is new is Annie’s ability and desire to express herself and communicate her feelings more effectively. She still must use her iPad since her speech approximations aren’t clear, but she now tells me when she is sad on her iPad, or when she will “C-R-Y” as she puts it in her spelling attempts at speech. She even saw Mr. Kreider at her school, Devereux CARES, and walked right up to him and spelled “M-O-M W-O-R-K”. Perhaps she thinks I’m the boss?? [Note: Mr. Kreider is Devereux’s CEO.]

Recently I had an amazing ‘silver lining’ experience with Annie. She and I were sitting on my couch and she had been complaining of a toothache in her bottom back tooth for a few days by pointing to it, using my hand and putting it on that part of her chin and saying “boo-boo”. Now I must preface this story in that little Miss Annie does NOT like the dentist, even though we have the most wonderful and patient pediatric dentist, Dr. Jeff. She had her first teeth-cleaning only two years ago when I had to have her sedated in a hospital because of her severe anxiety and fears of the dentist. We can’t even drive into the driveway to the dentist without her crying.

So… Annie and I were sitting together having a conversation on her iPad and she types into her iPad “dentist. Dr. Jeff”. Usually her messages say “NO dentist” or “NO Dr. Jeff”. I said “Annie, are you telling me you need a dentist? Does your tooth hurt?” She answered a “yeah”. I said “Do you want to go see Dr. Jeff tomorrow? Mama can call and take you to see him if you really have a tooth ache.” She again said “yeah”. I said “Ok Annie. I will call Dr. Jeff tomorrow and take you to see him. But you have to let him look at your sore tooth to make it feel better. Ok?” Annie answered “Ok” (That’s another new verbal response this year!)

The next day I quietly texted Annie’s teacher at school and asked her to ask Annie if her tooth hurt and if she said yes, to point to which one was bothering her. Sure enough Annie told her yes and pointed to the same tooth. I called Dr. Jeff’s office and they kindly squeezed Annie in, knowing they would need extra time. I picked Annie up from school and she was quite happy, knowing that we were going in Mama’s car. I ran through the scenario again with her to prepare her for what was to come: “Annie, we are going to go see Dr. Jeff for your sore tooth like you asked Mama yesterday. He needs to look at that sore tooth. That’s the only thing he has to look at – no teeth cleaning, nothing else, but you have to let him look at the sore tooth, ok?”. Annie answered “ok”. I had my doubts.

We drove to the dentist office and there was NO crying as we pulled in. I was surprised at how quiet and content she was. We got out of the car and she held my hand and walked in with me, with no real hesitation. I kept watching her for a reaction and there was none. They expected us at the office so took us right back. Annie preferred not to sit in the dentist patient chair, so she sat on the bench that I usually sit in. No big deal. I just couldn’t believe she was so calm and at ease. Dr. Jeff came in and her eyes widened a little bit…. I said “Annie, remember, Dr. Jeff needs to check your sore tooth. Can you show him your sore tooth?” She quickly opened her mouth and pointed to it, but then immediately shut it again. Dr. Jeff and I gently coaxed her into opening it for longer so he could get a better look at it since it was all the way in the back…me modeling “Ahhhhhh” with a big wide mouth open the whole time. Sure enough, Annie was getting her 12 year old molars and there was a small infection around her gums! Dr. Jeff said “Annie….you’re right! You do have a sore tooth, because you are getting new teeth back there. Great job telling Mom, and great job letting me look at them!” He asked for a hi-five and she proceeded to give him THREE hi-fives, she was so proud of herself. The dental hygienist then offered her the reward toy basket and Annie carefully picked what to me, seemed like the oddest thing out of it. She insisted that I open it right away. I did, and she put it on immediately….and wore it the whole way out of the office. Who knew I was raising such a comedian… and such a brave little girl.

Happy Autism Awareness Month!! — Amy and Annie


2 Comments on “Autism and Our First Toothache”

  1. gillian says:

    What did they prescribe for the infection? An antibiotic? My son has severe autism, and is non-verbal. He is not to the place yet where he can communicate well enough on his ipad to tell me he is in pain, but I can feel his molars coming in and he has been sucking on his hands a LOT! He is the same way at the dentist. Just wondering how long I wait before I think something is wrong and take him in.

    Thanks, and hope your Annie is flourishing.

  2. Resilient Blogger says:

    Dear Gillian,
    Thank you for your response, and concern for Annie. She is doing wonderfully, I’m happy to say. We are even working our way up to visiting the dentist without as much anxiety now!

    It is so difficult when your child can’t communicate to you how they are feeling, or if they are in pain. As mother’s we have a great responsibility in ‘interpreting’ for our children. I commend you in taking this on and recognizing the ways that your son can tell you – like sucking his hands. You’re his mom and you know him best. I would advise not waiting on things, but going to your dentist (or a pediatric dentist) and explaining about autism if they don’t have prior knowledge about your son and the disability. Autism Speaks has a wonderful toolkit on their website under ‘toolkits’ under ( that was created for parents and the dentists to use together. This is a helpful guide to print out and bring to your dentist office and share with the staff and doctor to help educate them about your child’s specific needs.

    For Annie’s particular case, it was her first cavity. She ended up needing a filling and did have to go under anesthesia at the hospital in order to have it filled. We were able to get a full cleaning in, however, and everything else checked thoroughly for the first time, which was a benefit. She did remarkably well, again, because the hospital staff was willing to work with me and cater to Annie’s specific needs. I would encourage you to partner with you dentist and begin the conversation about what might be going on first with your son’s oral care. Then, if Xrays or further information are needed, you can do the same thing with those technicians. Education is key, and you are your son’s voice – and best advocate.

    Best of luck. Let me know how he does!

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