On Autism and Dentistry

A life long battle I finally understand

It was always a mystery to me why The Dentist was aa extremely painful process to bear. My only relief about it as a kid was getting out of school, the place that made me sick and scared to be alive.

The Why of the difficulty was finally cleared this month.

I always told myself the reason I never went to the dentist was because of money. Which is partially true. I never had enough to take care of my health. Deep into my 30s my parents still paid for it.

This backs onto the reality of Autism, Poverty and Employment, a topic I will cover in the future. However, when I did have full-time work I would lie and said I went. I couldn’t make the call. I didn’t go for 9 years. I see now I cross the phobia threshold.

I was so adverse to oral hygiene since I can remember. I could maybe drum up the will power to brush my teeth once every two weeks for years. I never flossed because I couldn’t stand it. I assumed it was Depression, laziness. I heard all these myths about the more you floss the better it gets, but I could never explain to anyone why I couldn’t floss or show how heavy handed I was when I did, that blood poured from me like a faucet.

How come I just couldn’t do it?

One of the ugly sides of my late diagnosis is all the repressed memories of pain Ive experience and never being able to communicate why I felt certain ways or the extreme levels of distress I had with everyday occurrences.

After a terrifying return to the chair of a negligent clinic (as if I needed more problems), I was lucky enough to find my new and current dentist through Jiu Jitsu in 2017.

I had many compounded problems: tooth decay, cavities, bad breath I couldn’t get rid of, heavy plaque, bruxism, dental trauma, internalized shame from terrible staff berating my oral hygiene, gum disease, intense fear from bad operations, incredible pain from ordinary cleaning measures.

In time I learned to trust them and their clinic the best I possibly could but it was very clear to everyone who treated me I was never ok, and they did the best they could to make me endure the time as painless as possible.

Financial Help and Occupational Therapy

In May 2023, I began Occupational Therapy.

This was all I put my energy towards. That’s it. I didn’t give a shit about anything else. It was irrelevant. I wanted to learn how to have a quality of life.

These are considered Activities of Daily Living. First we started small. Floss once a week, brush twice. That is better than Floss never, brush never. Like in Jiu Jitsu…0.2% improvement is still improvement. One thing I noted to my OT is that going to Jiu Jitsu actually improved this ADL management. I am very regimented about hygiene at the gym for myself. I have my specific arrival routine that needs to be completed wether I train or teach—and brushing my teeth one aspect of this routine.

Through the Person With Disabilities and Social Assistance program I am in, I am now afforded care that offset basic costs for people with disabilities struggling with financial security because of employment issues. So last month I called my Dentist and went in.

Back in the Room

I watched as new hygienists called in others from the waiting room. I felt the sweat start. What if I have someone I don’t know? My mouth went dry. Then my hygienist came out to collect me. Crises averted.

“Its been 3 years since I saw you!”

It took me a second to recall where I was at in my life the last time I visited, closing my mind to it when I pulled those awful memories up.

As the hygienist asked me how things with my teeth were going, tears welled. I did not expect that. The year’s worth of OT was flashing before me. I had done work. I had made progress. I couldn’t contain my grief. I told her how hard I worked and how terrible the dentist has always been for me. How much time, effort and planning I poured into making my mouth better. How scared I was that maybe all my work didn’t matter after all—maybe it still wasn’t enough to move the needle of my life.

Then she asked if she could hug me and I accepted. She said for not having a cleaning in 3 years, my mouth was good. Some gum recession, which was a matter of how deep the brush can go, not a reflection of my effort for change.

The Procedures

Not long ago, I really believed my anxiety was so “randomly” high it was manufacturing the intense physical reactions/sensations of everything happening. This time, as I was laying there I realized: this is a sensory issue that is driving my anxiety, not the other way around.

Usually I got numbing injections for my cleaning. This time we tried a gel that, unfortunately, only came in Coconut. My most detested flavour. I was wary it would be enough, but soon everything began to numb. My OCD following up: Maybe you are allergic and don’t know? Maybe you are going to have a delayed reaction and die tomorrow. What if it gets stuck in my throat and I choke on water? I feel the panic rise higher and my skin tingles, prompting cold sweats.

Well, then, I converse with myself: Then I guess I’ll die.

Amazing how ERP, over time, is working for me. Re-training my brain not for reassurance and avoidance but confrontation and acceptance. I swear to whatever ERP is a spiritual science.

The “ultra sonic frequency” of the water scaler reverb is so dense on the inside of my head it pushes me into panic. It rattles my brain physically, like on rollercoasters. I feel every motion on my teeth, all the overlapping sounds in the room, blanketed by boiling lights, water building up and sloshing around my mouth and dribbling all over. I’m in a state of hyper vigilance for the the inevitable shockwaves of the instrument hitting my teeth giving me nerve jolts that disrupt the procedure.

The sound, the scraping, the rattling against my teeth goes bone deep throughout my body. If I ask for a break that only extends the time I have to be here.

I’ve lost count of the number of times I’ve heard “That’s not normal” in regards to my genuine reactions, physical or emotional. So I always did my best to hide my feelings, spending years studying and monitoring how I could be less of myself.

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I tried plugging my ears to help muffle the aggressive sounds.

“Oh,” the hygienist said, “I have ear plugs.”

It wouldn’t occur to me to ask for earplugs.

Am I doing a proper job in explaining how much I cannot connect things about myself to myself? On the surface, I’m absent minded, but the truth is I struggle because I don’t know.

How can I be so impossibly self aware unless someone tells me. Literally, the only time I have accomplished progress in Therapy is because others saw me, told me and could actually, sometimes physically, help.

The Impact of ADLs

Many times I have walked the 2 hours back to my home from the dental office to decompress, unable to manage the additional stress of boarding public transit.

These daily choices are things I’ve always fought with myself about.

Living in a personal negotiation 24/7, on alert and accounting what I can live with without furthering distress. This operated unconsciously for over 30 years. Waking up to the truth of how I walk through the world has been shocking and disorienting.

The fact of the matter is I cant—and never could—control how my body sensorily reacts. I assumed I was weak. As I aged, I chose to suffer silently than risk the nagging criticism of being “over the top” and “so exaggerated”, being gaslit that my feelings and internal body experiences weren’t real “its not that bad”, “calm down”. A constant lose-lose situation where I nothing I felt or saw was clear.

I have since learned that if I intercept an emotional feeling I cant access or identify with a temperature change, it dampens whatever in my brain or body is firing from distress. It doesn’t prevent anything, but taking to ice or water is soothing. I think it is comparable to how others feel about talking to someone or having someone hold them. It’s the same type of relief.

Without my diagnosis, my life-and mouth-was disintegrating.

I am only healing now, literally, because of it.