Asperger’s / autism survival strategies in appointment-related environments

As some of you know, I’ve recently undergone extensive dental work over the past few months.  This required numerous appointments and procedures.  And I’m still not done.

But, to state the obvious, I survived; I’m still here.

That’s not to say it wasn’t traumatic.  That’s not to say that it wasn’t anxiety-inducing.  That’s not to say that I’m not exhausted.  But I lived, and I do think I’m better off now than I was before, so I can honestly say that I’m glad I went through it.  (Not that it was fun, by any stretch, but it was necessary.)

And I’d like to “pay it forward” (whatever “it” may be – grin) by sharing some of my survival strategies with anyone reading this.  As always, I can only speak for myself, and my circumstances, sensitivities, needs, and considerations may be different from those of others.  Your mileage may vary, and not all strategies will work for everyone.  Also, I’m still new to the Asperger’s/autism “world” (vocabulary, way of thinking, knowledge base, community, etc), so my information may be limited at times, and I probably don’t have all the answers; my journey is definitely a work in progress.  With those two prefaces in mind, take this post as you will. 🙂

There will actually probably be several posts related to this topic, albeit with different flavors; for example, there will likely be a “travel edition”, and maybe a “hanging out in public places” edition, and anything else I can think of.  I’ll tag these with “survival strategies series” as I write them, for easy reference.

This particular post will cover mostly healthcare-related appointments – conventional practitioners, complementary/alternative practitioners, and the like.  I’ll cover some general strategies that apply to multiple types of meetings with these professionals first, and then I’ll delve into categorized recommendations that apply to each specific type of practitioner.

In general (applies to multiple situations):

  • Prepare well – eat a healthy, medium-sized meal.  Be properly/sufficiently hydrated.  Make one last restroom stop; ensure that your bladder is empty.  Practice what you want to say, or maybe even write it out, before the anxiety ramps up and words get “lost”.  (An 3×5″ or 5×7″ index card may work well for this.)  Try to sleep well the night before.  Give yourself plenty of time to get to the office.
  • Bring socially-“acceptable” “stimming” tools–books, iPad, kindle, smartphone, Rubix cube, music player, etc.
  • Bring any other soothing/anxiety-reducing tools you might need – noise-canceling headphones, “chew-toys”, a weighted blanket (or ask if they have one on hand), a favorite soft item to clutch, wring, or feel.
  • Make a list (in advance) of anything you’d like to bring with you, such as the above “stimming” tools, and anything else.  Gather these items the day/night before, so that they’re in one place, ready to go, and you can just scoop them up on your way out the door, resting assured that you haven’t forgotten anything in the morning frenzy.
  • If paperwork is involved, try to fill it out and submit it in advance.  I recommend double-checking with the office staff to ensure that they received it and properly noted it in their system.
  • If you’re a new patient or client, or are having a procedure that causes a lot of anxiety, try to get someone to drive you and/or accompany you.  Give yourself plenty of time to meet up with that person and start out towards the practitioner’s office.  Also, there’s no shame in asking the practitioner if that person can be in the room with you!
  • I disclosed my Asperger’s/autism status to all of my healthcare providers.  I recommend doing this, if you can and if you feel comfortable doing so.  Then, briefly outline applicable characteristics and how they’re relevant that particular situation.  Example: “I ‘have’ Asperger’s/autism, and this is what it means for us in this context: … “
  • Ask for what you need and want (extra time, patience, gentleness, calmness, explanation, heads-up/expectations, communication methods, etc)
  • Be proactive; ask questions.  Ask them to tell you what’s coming next.
  • Communicate pertinent information–fainting, flinching or inhaling quickly due to pain sensitivity, etc
  • Give feedback along the way. If they do/say something that is helpful or that you do or don’t like, let them know. Let them know how it affects you (either positively or negatively); be specific.
  • If needed, respectfully offer constructive solutions or ideas.
  • Approach your appointments/meetings and procedures together with the practitioner as a team/partnership.
  • Be courteous; please, thank you, compliments.  (We each represent the Asperger’s/autistic community as a whole, since we may be one of only a handful–or perhaps the only one–of their patients/clients on the spectrum, and we want to represent the community well.)

Going to a conventional doctor (or conventional specialist):

  • If at all possible, and if you have a choice in the matter, try to choose a doctor who has a compassionate bedside manner, someone who is open-minded and understanding.  They probably need not be particularly well-versed in Asperger’s/autism spectrum conditions or working with people on the spectrum; in fact, those doctors can possibly be more detrimental at times, since we know there’s much misinformation floating around about Asperger’s/autism, and doctors who believe they’re already competent in this area may be more outdated and resistant than those who haven’t given otherwise the autism spectrum much thought.  Open-minded and compassionate is best; even if they’re clueless about Asperger’s/autism, if their minds are open, we have an opportunity to teach them (!)
  • Since doctor’s appointments are generally the shortest, most hurried, and often most serious types of appointments, it might be even more important to write out what your concerns are, what goal(s) you hope to accomplish, your symptoms, a brief timeline of when each symptom started, words to describe those symptoms, etc, so that you can make the most efficient use of your time and get what you want out of that appointment.
  • I recommend listing your symptoms or concerns first and then your goals (unless the goals are more prominent than symptoms/concerns), in bulleted lists.
  • Writing or typing/printing out the above might be extra-advantageous, because you can then hand that piece of paper to your doctor in case they have time to review it later, particularly if you aren’t given enough time to cover everything you wanted to cover in person.
  • I recommend typing this out on a computer and saving the file, so that you always have it, in case it gets lost in the shuffle at the doctor’s office.
  • Include your full name and date of birth at the top of the page so that they know whose file the paper belongs to.
  • If there are multiple pages, I might include “Page ‘x’ [page number] of ‘y’ [page count] pages” at the bottom, so that they can tell right away how many pages there are supposed to be, and in which order each page goes.
  • If you have preferences for–or aversions to–anything specific, include those as well.  These preferences/aversions can include anything from certain medications to certain procedures to a desire to avoid scratchy paper gowns during examination, etc.  Try to see if they’ll work with you.  If you list these on the sheet of paper I mentioned, it might be good to include a (very brief) reason why, such as the effect that those medications/procedures/gown example, etc have on you.

Going to a dentist:

  • These are often some of the more traumatic and painful appointment types, so anxiety, pain relief, and recovery can become focal-point issues.
  • I recommend stocking up on over-the-counter painkillers before going to the dentist; it’s better to have them and not need them than vice versa.
  • I also recommend calling ahead to find out if they have weighted blankets (I was pleasantly surprised–I even clapped lol–when I found out that my dentist’s office did indeed have a weighted blanket on hand!!); if not, ask if it would be OK to bring your own, if you have one.  They make all the difference in anxiety!
  • Since music is one of my “stress relief valves”, I have brought a music player and (comfortable) headphones with me since 1989, long before dentists started keeping those on hand, too.  Under anxiety, I’m a little more particular about which music I can handle, so I’ve actually made a “dentist playlist” on my iPod.  Nothing too fast or heavy, and yet nothing too slow, either.  Even though I love contemporary flamenco music, I find it to be a little too rapid and overwhelming for me when getting dental work done.  If you decide to take your music with you, try to sit down several days beforehand and carefully contemplate (realistically) what might be soothing to you, and what you might be able to handle, well in advance.  (Then, test it out after creating/loading the playlist to ensure that it works!)
  • My body/liver tends to process Novocain and other injectable numbing agents very quickly, a very Un-FunFact I discovered during the extraction of two wisdom teeth.  That was pure hell; I learned the hard way, and determined to never relive that kind of pain, I now let all my dental practitioners know up-front that I will likely need extra Novocain, because it wears off much faster for me than it does for others.  I’ve found them to be quite accommodating!
  • Shades or wraparound sunglasses work well, especially in different colors.  My primary dentist uses green-tinted ones; my endodontist uses ones with charcoal gray-tint.  These tend to work fine.  I think yellow/orange might be too bright for me, red may be too stimulating, and blue might be too monotonous or maybe even depressing (depending on the specific hue of blue).
  • Sometimes I get chilly in the dentist’s chair; I’ve thought about bringing a heating pad for my low back, but I don’t want the dentist or their staff to have to work around–or risk tripping over–the electrical cord.  So I’m not sure how to reconcile this; I might have to continue to go without, unless I can find a good battery-operated one or perhaps a sturdy old-school rubber hot water bottle (the kind that was–very erroneously–used for my earaches/ear infections).
  • My general dentist is awesome and his staff rubbed a very calming, relaxing cream on my neck (over the blood vessels).  It smelled wonderful and mild (i.e., not overpowering), and it absorbed well, without feeling greasy on–or irritating to–my skin.  It was very relaxing, evidenced by a drop in blood pressure after application!  I don’t know the name of it, but I’ll try to find out.
  • Rescue Remedy by Bach Flower Remedies (I think), is another possible option; you spray it and inhale it.  It’s a completely-natural blend of flower essences or essential oils or something.  People swear by its immediate calming effect; the effect is moderate-to-potent for most, merely mild for others.  I’m unaware of any herb-drug interactions, because I believe this is an inhaled spray, not ingested orally.

Going to a chiropractic doctor:

Chiropractic physicians administer spinal and joint manipulations, usually by using their hands or an instrument.  These manipulations are typically not painful, but occasionally they can be, and regardless, they can feel “funny” (unusual sensation).  Although the speed and force are great, the depth is shallow.  In other words, it’s a quick and relatively hard move, but it doesn’t push very far into your body.  Personally, I love it and find it to be of excellent benefit when needed.  But my body and nervous system require some special treatment, of which I’ve become aware over the years…

  • In general, I can handle a manual (by hand) manipulation; I prefer those manipulative movements that can be done lying face-up, as opposed to face-down.
  • My neck, however, does not like manual manipulation.  Sometimes, an instrument must be used instead (these instruments are usually mechanical and have multiple “settings”, from lighter-force to heavier force), and my neck is too sensitive for anything but the lightest force.
  • Some days, I can’t stand force at all, and my body must be positioned on firm pad-like “blocks” for about 20 minutes, so that the force of gravity can slowly realign my body.  This is a fantastic technique that can be every bit as effective as regular manipulation.  Some chiropractic medical schools teach it, while others don’t.  Always ask!  It’s called SOT, or Sacral Occipital Technique; some practice the technique “purely” (by textbook, and are very into it), while others simply incorporate it into their potpourri of techniques when needed, such as using the positional firm-foam blocks.
  • I can only handle so much manual/instrument manipulation at a time.  I benefit from the first few manipulations, but then, at some point, my nervous system gets overloaded and further manipulation has a subtly detrimental effect, usually manifesting as an impatience or irritability, as though my body is saying, “enough”.  Over time, my chiropractic physician and I have determined when that point is likely to be reached and we stop just shy of it.
  • I also find it helpful when the chiropractic physician explains what they’re going to be doing next and how it might feel.

Going to a massage therapist:

Typically, most types of massage therapy are provided with the client being unclothed and completely covered in a sheet.  At no time does/should the massage therapist be able to see private areas.  At least, that’s according to US custom; European customs are different, in that it’s much more common for the client to be unclothed and uncovered.  However, even in Europe, it’s your right to request to be totally covered at all times, with the exception of the body area currently being worked on.  Massage therapy also tends to use oil or cream as a lubricant, for easier massage.  Since much of the massage often focuses on a person’s back, much of the session takes place with the client lying face-down.

  • I’m quite averse to the feeling of being wet in any way, so I ask that the massage therapist use minimal amounts of oil–just enough so that their hands can glide across my skin.  After the therapist has finished working a particular body area, I ask that they use the covering sheet (or some other clean towel) to dry off that body area).
  • Thicker massage creams aren’t an option for me, due to sensitive skin; I often break out in a rash.  Jojoba oil is an excellent non-greasy lubricant that is extremely hypoallergenic!
  • I hate percale sheets!  I find them scratchy and unloving.  I ask for “jersey sheets” (made out of T-shirt material) or, in cooler months, flannel sheets.  (If your massage therapist doesn’t have these on hand, and you prefer them, ask them if you can bring you own.)  I also ask that they put another blanket on top of the sheet, for both extra weight, and extra warmth.
  • My toes are extremely ticklish, so I ask that the therapist work them slowly and with firmer pressure.
  • Massage therapists are taught to minimize breaking contact with a client – i.e., to keep their hands on the client as much as possible.  They’re also taught to apply pressure in strokes that move toward the heart, so as not to damage blood vessel valves.  So, many schools teach therapists to deliver a “nerve stroke” or feather-light brush across the skin when returning to their starting position.  I can’t tolerate the feather-light nerve stroke, so I ask them not to do that.
  • I also find it helpful when the massage therapist softly announces which body area they’ll be working next.
  • If something isn’t right, such as pressure, room temperature, sinuses become congested, lights are too bright, etc, any good massage therapist will be very receptive to your feedback and requests for change.

Going to an acupuncturist:

Acupuncture stimulates certain points on the body, typically using ultra-fine needles.  In general, they’re not supposed to hurt very much, nor are they supposed to draw blood (except in situations of very specific techniques with specific goals).  They should not cause any nerve damage, puncture lungs, cause infection, or anything else.  It’s common to feel a slight momentary sting as the skin is initially pricked, and then a dull ache (that subsides pretty quickly) as the needle reaches its final resting place deeper in.

  • While another Aspie I know can handle needles just fine, I find that my body is very touchy; some days I can tolerate needles fairly well, while other days I can’t.  There are indeed needle-free acupuncture methods!–I think there are four or five different kinds.  My acupuncturist accommodates me well and often uses them.  (Most schools don’t teach needle-free methods, however, so you may have to call around when finding an acupuncturist.)
  • Many areas of my body are more sensitive than others.  I can tolerate a lot on my back, but my body gets more sensitive as you fan further out from the center to the periphery; my toes are more pain-sensitive than my fingers.  I can handle needles in my ankles and shins better than I can handle them on my arms or inside the crease of my elbow, though.  So, my acupuncturist might use different techniques, needle and needle-free, to work points in different areas.
  • I find it very helpful when the acupuncturist lets me know when the needle is going in.  They also check in with me after the needle has been inserted for about half a minute, to see how it feels and if it’s tolerable.
  • Since the needle method requires half an hour, it’s important not to move.  Since I’ll be there for a while, I like to have my music player set up, unless the acupuncturist has good music playing in the room.  I like blankets covering the areas that don’t have needles in them.  I need the lights dimmed, either all the way, or very close/low.
  • Since I’m cold-sensitive, especially if I’m laying down for a while and relaxed, I often ask for moxibustion or heat-lamp-moxibustion; both are comfortably warming and soothing, and both work points without needles involved.

No matter what type of healthcare provider you’re seeing, always remember that you are–or someone is–paying these professionals to serve you.  It’s your body and your health; the outcomes (good or bad) are also yours and at the end of the day, you are the one who will live with the result, for better or worse.  Thus, you have every right to be heard, listened to, accommodated, and cared for. 🙂

***

(Image Credit: Cyril Rolando)

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2 Comments

  1. Thank you so much for your dentist comments. My teeth are a mess because I have a particular phobia when it comes to dentists. I have recently found an understanding dentist who will work with me to ensure all goes well, and have begun a series of appointments to do the necessary repairs. I will definitely try some of your soothing techniques.

    Liked by 2 people

    1. Thank you very much for your comment! I can totally relate; big fear of dental work, so for 4 years, I didn’t even have so much as a cleaning! (Yikes! Lol). And so yep, my teeth are also a mess 😊 I’ve got a 4-phase plan for dental health:

      1) resolve urgent needs (fractured teeth, root canals, etc)
      2) resolve minor cavities, etc, before they become urgent needs
      3) remove mercury amalgam fillings
      4) cosmetic – whitening/veneers/etc, braces if needed, etc, for a prettier smile 😀

      I’m so glad you found a great dentist! I wish you the very best of luck with them, and I hope they do you a lot of good. My thoughts are with you! Keep me posted, if you want to, OK? We’ll go through this journey together 😊💖

      Liked by 1 person

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