Dentists and Autism

Just before leaving to pick up Seth at school yesterday, I got a reminder in the mail from our most recent dentist. It’s time for cleanings. In the car, I found myself getting more and more agitated.

This is the dentist we switched to, after the last dentist. Before we saw this newest dentist for the first time I called ahead to pre-pave. To let them know about Riley’s anxiety. I assured them it would most likely be fine, she’s doing so well, but I felt it would be better for them to at least be aware.

In the car Riley said she was nervous. I assured her it was just a cleaning. I told her she’d had plenty of cleanings by now, and it would be okay. In the waiting room, the assistant came to call her back. I asked, “Riley, do you want me to come with you or stay in the waiting room?” I’d always come with her before, but she’s getting older. She grabbed my hand and said, “I want you to come.”

At this point, the dental assistant attempted very strongly to intercept me, and take Riley back by herself. We went around at least three times with it, and she was quite firm. You could tell she’d been sent out to do the dirty work. Like she was going to be in trouble or something if I waltzed back there with my kid. I told her I wanted to see the dentist and she put me in a little side room, (with Riley), to wait. At this point, not wanting to be the cause of any strife, Riley started ramping up, pleading, “It’s okay Mom. I’ll go by myself. It’s okay.”

I told her, “No it isn’t okay.”

If my child on the autism spectrum has a problem with anxiety, and it will reassure her to have her mother in the room for a cleaning, then what is the big deal? Why do dentists assume that they know better than parents of children with autism? How much training do they actually have with kids on the spectrum? I’m betting none. Why do they assume they know what to do if they run into a problem? Why do they assume we are the problem?

Dental visits are anxiety provoking for many people, and for Riley even more so. You can’t minimize her sensory issues. She is doing so well, and she puts on a brave face, but hold her hand walking down a street and you realize how truly sensitive she still is. She flinches and squeezes your hand at noises that wouldn’t phase most of us. In the car, she screams if I hit the brakes unexpectedly. Her panic response goes from zero to 100 in an instant.

In all likelihood her cleaning would be fine, but there was a chance it wouldn’t be. There was a chance the dentist wouldn’t take her sensory issues into account. And if not, there was a chance he’d be the trigger of a full scale scene. And there is a chance he would then shame her and blame her for her reaction to his own insensitivity. Ask me how I know. This happened with one of the assistants at the orthodontist’s just a few months ago. It’s never ending, the need for advocacy, and until I am clear she can do it on her own, I will be with her, if she wants me to be.

It took years of hard work to get her in the dentist’s chair. I wonder if this dentist realized that? I wonder if he realized how punched-in-the-gut I’ve felt nearly every time I’ve had to deal with a member of his profession?

In the end, the dentist never came into the “intimidation room” to talk with me. We were whisked back. I sat in the corner unobtrusively, while Riley got her teeth cleaned, without incident. I did not hover over her. I did not make it worse. I looked out the window, and held space for my girl, as she demonstrated yet another feat of bravery. Letting professionals she’d never met poke around in her mouth, bright lights, sounds, uncomfortable sensations. She handled it all.

When I got home I went into the privacy of my bedroom and cried. It is so tiring to be treated like this, and when it happens it brings up every other time it’s happened.

And then, like we autism parents do, I got on with things.

The reminder post card is serving to mark my page in a book I’m currently reading. It’s about the brain and the different areas of it and how they effect various learning disabilities and how we can strengthen areas of weakness. It’s what I do. I study. I help my kids.

As I turn the post card with the reminder over and look at it, I think about all this. It occurs to me Cleveland has a dental school. I wonder if somehow I could arrange to talk with the up-and-coming students. I wonder if in some small way, I can help turn this around.

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14 Responses to Dentists and Autism

  1. kario says:

    Oh, Michelle. Your efforts and enormous heart are inspiring and tireless. Of course you will be part of the solution and, I suspect, you will encounter some lovely dental students who let your message resonate and send ripples out into the world.

    I am so sorry that some “professionals” insist on acting like this in order to preserve their own sense of control over their domain. I hope that you can make some inroads with this new dental office as well and find a sympathetic ear.


  2. Kim G. says:

    I love how even when you are treated poorly you still have a passion to be part of the solution. God bless you for your tireless efforts for your kids and for all you teach us about living a life of compassion. {{hugs}}

  3. Chris V. says:

    Please praise the hell out of yourself if you haven’t already… and yes! New dentists need to hear this. Your stamina and determination is remarkable. Keep writing about it, keep sharing…. !!!! We love you !!!!

  4. Anne says:

    It’s not just with kids on the spectrum. My daughter is neurotypical (whatever that means) but has had cavities from a very young age.When our pediaric dentist retired, the new one really traumatized her. I finally found a really, really good one who is firm but understands her issues. It took many visits before she was comfortable but it is always a struggle. After the last visit (just a cleaning) she said she didn’t want to go back….and then drove me home because she has her permit!!

  5. Julie A says:

    I would strongly encourage you to try to be an educator as well as an advocate. So many other children could benefit from your knowledge and I bet there will be someone in those classes who really hears you and becomes a more compassionate dentist. I live and work in an area that I can only describe as being “sensitive” to the issues of ASD (a city in Michigan actually),where the incidence of ASD is high, and I am amazed–there are some professionals who do reach out to children with ASD to make it better (a hair salon here for example)–all the parents then use them.
    You are a great writer and I would assume a great speaker 🙂 May your voice be heard!!
    ps I work with preschoolers who have special education needs and this year our big university hospital sent interns to visit our classrooms who were SO grateful to see us in action. One young man said he felt like they got very little training at all in typical development and certainly not atypical development.

  6. naomi says:

    You will speak at the dental school. xo

  7. Kathee says:

    Michelle, there is a dentist in Pittsburgh that has a great reputation for treating children with special needs. I have never met him but his name always comes up when parents are at the end of their rope with dental visits. I’ve actually heard parents refer to him as a miracle worker and dental wizard for kids that could never tolerate a dental visit. He works out of Children’s Hospital in Pittsburgh. Below is a link. Also another link that I had bookmarked. Lots of great info. I know the going into the room and crying thing. Have been there myself this week. Love to you and your family and even to all those dentists that need to get a clue!,+Brian,+DMD

  8. Carrie Link says:

    I’ve said it before, and I’ll say it again, YAMH. Yes, turn it around. If anyone can, you can. And holding space. NECMB of holding space with one another.


  9. amanda says:

    i am SO cheering for you! xoxo

  10. Colleen says:

    My childrens’ dentist has a Master’s degree in Psychology. His goal is to make kids comfortable and prevent future dental phobias. He strongly believes that going slowly and letting kids set the pace leads to a life time of going to the dentist versus avoiding them. This may mean that many visits when kids are young don’t get everything we would like to get done, but the kids over time get more comfortable. I drive across town to get to this dentist and he is so worth it

  11. Meg says:

    The arrogance of certain professionals never ceases to amaze me. And your willingness to not back down and be firm amazes me, too, in a very different way. I think that if you can teach future dentists even a wee bit of sensitivity you will have accomplished a great deal.

  12. Tanya Savko says:

    What Carrie said. Totally. You uplift me, my friend, by your sheer being. Love you.

  13. This post makes me cry. I can only imagine how hard it must have been for you. I’ve encountered so much bullying at the dentist’s office with my non-sensory-issue kids and to be treated that way–or have the threat of it hang over you–with a kid who is hard-wired differently must be that much harder. You were so strong. So was Riley. But it’s hard for me not to be furious at the way those medical personnel treated both of you.

  14. Laurel says:

    WOW! I have so much empathy for you and Riley and so much anger and frustration for the office. YOU are the parent and the client/customer and what you need should happen – end of story. Even without special needs of a child, there are often normal anxieties and nervous feelings that it is our job and want to help our children with and no one should interfere. We are fortunate that our health providers always let us ‘be in charge’ and if they won’t I’m moving on. I hope that this doesn’t happen again.

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