One of the other things that occupied me last month, which I completely forgot to even mention in my Updating post was figuring out how to ask for some extra support at the dentist.
To sum up a bit before delving into the whole story: I ended up writing an email. I’m putting the entire email I sent to my dentist in this blog post in the hope that others might find it helpful to have a bit of a blueprint of what such a letter could look like for their specific situation.
First, though, before I could ask for anything, I had to work through what reasonable accommodations even meant. It was clear after my previous dental visit, that I needed support of some sort if I was to have any hope of bettering my dental situation in the future.
I reread my diagnosis paper in preparation and was struck (in a good way) by the “requires support” language.
Okay then. I require support. It’s fine for me to ask for that support when necessary. It’s a good thing to ask for support!
So, having determined that it was a good thing to ask for support, I went looking online for anything that might be helpful in figuring out how to ask for it.
Instead I found article after article written from very allistic (non-autistic) perspectives about 5-ish year old autistic boys and dental visits. The article suggestions were pretty darn condescending for the most part too and I’d probably have felt condescended to by many of the suggestions even as a 5 year old.
The suggestions were rather less than helpful even when they managed to be somewhat relevant to my situation. So discouraging.
The only article I found that was actually relevant to adult autistics was an article about healthcare providers in general. That article was very helpful to me and I included a link to that one in my email to my dentist, but I also wanted to give them a more personalized account of my specific needs/struggles.
So, without further ado, I spent a good four hours composing and editing the following letter. I ran it past my allistic husband and slept a full night between writing and sending the email.
I’m going to make notes after most sections to elaborate about why I chose to include the things I did and this is going to be extremely long because the letter itself is quite long to begin with, but I think it’s important that this letter be out there so that others might not have to start this process very nearly from scratch the way I had to.
Here it is!
I want to start by thanking you for your support and encouragement at my first two appointments.
With this first sentence I’m following a rule that I like to call, “start with something positive.” What I’ve written here is 100% the truth, but putting this specific truth first was a very deliberate and calculated decision.
I’m asking someone for a favor in this letter. I want my dentist to carefully read this very long email and then treat me differently than they treat their other patients. That’s a lot of time and effort for a busy health professional who sees hundreds of other people. I believe it’s important, therefore, for the dentist to understand that I appreciate what they do already. Unsaid is the implication that I will also appreciate the extra efforts I’m preparing to ask for.
If you write an email/letter to your dentist, you can easily change this part to be something that you personally appreciate about your dentist. It doesn’t have to be a huge big thing or even very specific – mine isn’t.
If it’s a new dentist you haven’t seen before, try to convey hopefulness about their willingness to accommodate you. Assume the best about them and make sure to put that assumption clearly in the letter towards the beginning. That tends to go a long way towards encouraging a favorable reception from people.
If you cannot think of anything that’s both true and positive to say about your dentist, then please try to find another dentist. I know it’s not always possible, but it makes a huge difference to have a supportive care provider who listens and is, at the very least, able to act like they’re a nice person when they’re around you.
This might get long, but I’m telling you all of this because I trust you (*friend who referred me to this dentist* has said nothing but glowing praise for you) and I sincerely want to do better in this area of my life. My apologies for not sending it sooner. It was not my intention to drop this on you only a day or two before my next appointment, but it unfortunately has taken this long for my words to actually come together.
An up-front warning that a letter is going to be long is usually appreciated, I’ve been told. I then very clearly outline more good true things to keep it positive at the beginning.
One of my goals is to enlist the dentist’s help as I attempt to do better with my tooth care and I want them to know that I’m trusting them enough to do so. In my initial draft I had written “I want to trust you…” but decided that could be rather badly misinterpreted and took out “want to.”
I was very truthful and open about why I sent the email so last-minute because I felt pretty badly about doing that.
Getting Into the Explanation:
In the past I have had issues with dentists. I have had a pretty consistent pattern of seeing a dentist, having a cleaning, getting the emergencies taken care of, and never returning for regular dental care. Then, a few years later, I’d do the exact same thing, but with a different dentist. Sometimes seeing a different dentist was inevitable because of moving, but not always.
Anyhow, I don’t like that pattern. I know it’s been extremely detrimental to my health in more ways than one, and I would very much like to break the pattern. I think I can, with support, but only if you have a full understanding of my difficulties and the probable reasons behind them.
Above, I outlined my personal problematic pattern of dental care. Yours might be different, but I believe it’s important to really determine what your personal patterns look like, why you’ve done things that way in the past, and let your dentist know what those are so they can help.
Then I let the dentist know that I understand why and how this is a bad pattern to have and that I will need their help in order to (hopefully) break that pattern.
The main theme here is, “I want to do better, please help me in doing so.”
Telling the Dentist I’m Autistic:
Until two months ago, I had no idea why that pattern was so consistent for me. Many things about my life have always been confusing and/or traumatic to even remember, let alone experience in the first place. Then, on August XX this year, a couple of hours before my first appointment with you, I received an official autism diagnosis.
And this is where I chose to first mention being autistic. I didn’t mention it at the beginning because I wanted to take care of the previous things (giving a couple compliments, asking for help, assuming the best, outlining my pattern, etc) before bringing in any possibility of having negative/unhelpful stereotypes read into my words.
At my first appointment with you, I was physically not capable of talking about my diagnosis because it was too new. It often takes me a fair amount of time to process and then to be able to communicate effectively about things – especially things pertaining directly to myself. I have a tendency to “lose words” and not be capable of verbally communicating (either at all or in an effective manner) when under a great deal of stress and/or when I’m being misunderstood.
Prior to completing my second appointment with you, I had hoped that my self-understanding of my difficulties would be sufficient and I could just let you know about my most relevant sensory issues. However, I had a great deal of difficulty with my last appointment and, after giving it some thought and doing a fair amount of research, I have come to the conclusion that it’s important for you to know that I’m Autistic, very recently diagnosed (so still figuring out what this all means for me personally), and that a great many of my dental issues likely stem from a combination of sensory, communication, support, predictability, and executive functioning issues.
That’s basically an explanation of why I hadn’t said anything before about my diagnosis and why I think it’s necessary now to tell them.
I used the summary of my issues (sensory, communication, etc) as a lead-in for sharing a much more comprehensive list of my most common issues regarding dentists and dental care.
My List of Dentist-Relevant Issues:
Some of my most relevant issues are as follows:
I started with sensory issues because those are the issues I had already talked a bit with the dentist and hygienists about. I figured that it was better to start with a topic they were somewhat familiar with.
*Difficulties with brushing sensation & mouthwash.
*Unexpected or light touch ranges from unpleasant to painful.
*Strong artificial perfumes give me headaches & make me feel lightheaded.
*Many other sensory issues that I personally take precautions against.
I did not want to overwhelm them so I only specifically mentioned the most intense sensory issues I have that the dentist and hygienists can directly affect. For example: I did not mention problematic lighting because my visual sensory issues are much less than my tactile sensory issues and I can keep my eyes closed most of the visit if needed so it falls under that last * as one that I personally take precautions against.
That last bullet point was important in part because I wanted to be clear that the list wasn’t exhaustive. Just because I can manage a sensory issue most of the time, doesn’t mean it won’t potentially be a problem in the future, and that point nicely leaves the door wide open to bringing those up in the future, if necessary.
*I often do significantly better with written communication.
*I usually cannot identify my emotions reliably until well after the fact.
*I do not always manage to correctly project my current emotional state through body language/facial expression.
*Once my emotions are identified, I have trouble expressing them verbally.
*I occasionally lose the ability to verbalize (selective mutism) in upsetting situations.
*I retain auditory information best when either not looking at someone or while watching their mouth.
*My processing speed is fairly slow and if I’m expected to answer quickly then I’ll generally fall back on scripts (e.g. “How are you?” “Fine.”)
*I have trouble distinguishing between when a question such as the above example is meant in a superficial way, and when it’s meant to actually glean information (Say, to find out if I have any tooth pain).
*Vague, open-ended questions are often difficult for me to respond to.
*Phone calls are hard for me – I very much appreciate your text reminder option for appointments! It helps immensely.
This category, more than any of the others, kept getting longer and longer. I think it started off with just a couple of bullet points before I moved on to the next category, but I kept remembering more and more things that were relevant and should be added to “communication issues” over the 24-ish hours between when I started the letter and sent it.
I was rather surprised at how long that one ended up being.
*Difficulties remembering to brush/floss/mouthwash. I’m doing much better with this – haven’t missed a day since my first appointment with you.
*Difficulties planning/making appointments. If I don’t set up my next appointment before leaving then it’s unlikely to ever happen.
As surprised as I was about the communication section being so long, I was even more surprised about the executive functioning section being so short, but it was easier to sum up my issues here. Much more complex dealing with them myself, of course, but they didn’t really need to know any more than what I wrote here.
Predictability – also tied in with sensory issues:
*Knowing what’s happening and why (e.g. hygienist moves to other side, but tells me first). The first hygienist I had did this pretty naturally, it seemed, and I appreciated that.
*Getting the same hygienist every or most times, if possible.
Here I mentioned the positive experience I had with one of the hygienists who worked with me, implying that the second one wasn’t as natural at doing that (because she wasn’t, but I didn’t need to outright say that) and implying that I’d prefer a hygienist like the one (or the actual one) who worked on me at the first appointment.
Summing it Up:
In this email I’ve tried to be as thorough as possible. Some days I can more easily cope with sensory issues and communicate more effectively, while other days are worse. Two important people in my life died this past summer and both of my cats died unexpectedly, shortly before my last appointment. I’m certain those losses have affected my current abilities as well.
I also don’t want to give you the impression that I’m going to be difficult. Quite to the contrary, I will do my best *not* to be difficult! In return I ask that you continue to be patient and clear. Please ask for clarifications if I’m coming across as difficult and I will do my absolute best to figure out what’s going on and explain and/or clarify.
I wanted to make sure that I wasn’t automatically expected to always do as well as I manage to do at my best appointments because my abilities can vary depending on the circumstances.
I also didn’t want to be automatically labeled “difficult.” Of course I know that autistic people do very often get labeled that way, sometimes even despite our best efforts to not be difficult.
So, I wanted to be explicit about my efforts to be a good patient to the best of my ability. I’m not asking for accommodations in order to make the dentist’s life difficult, but rather to make it easier for them to understand and help during those situations when I might appear to be being difficult.
I was unable to find any helpful websites about autistic patients specifically for dentists because most information is geared towards working with autistic children and is largely irrelevant to my situation as a late-diagnosed Autistic adult, but this short healthcare provider article might be helpful: http://autismwomensnetwork.org/accessible-health-care-for-autistic-adults/
I wasn’t particularly keen on the idea of the dentist getting on google and reading a bunch of allistic-written articles about being a good dentist to autistic children and then incorrectly applying that advice to me. So, I headed that off by letting them know that what I’d already found was pretty darn useless, as far as I’m concerned, and then I gave them the link to the one relevant resource I’d found.
I do not expect a response to this. I know you’re very busy and I’ll be seeing you on *day of the week* anyhow.
Thank you so much for taking the time to read through this email!
To end it all, I specifically acknowledged my understanding that the dentist is very busy. I wanted to be clear that I appreciated their time reading through such a long and detailed email – especially for a nearly brand new patient, like myself.
Again, my goal with this email was to be listened to so I could get the support I need. In my experience, people tend to listen much better when they feel appreciated and that their time is valued by others.
So, there’s my letter! I’ve had two visits since sending it and they’ve been much more bearable than the first two were. It was completely worth it to send this even though I was pretty terrified to send it beforehand.