I don’t think this is medical advice, so I’m asking it here. It’s more about how to best communicate with doctors. I have autism and I’m tactile defensive (don’t like to be touched). I understand that touch is an important part of a doctor’s exam, but I can’t help flinching when touched. There are things doctors could do to help, like announcing what they’re going to do before they do it. But, when I tell this to doctors, they don’t understand. They think I’m worried about germs. Sometimes they start asking me questions about a history of abuse. Very few of them seem to know the term “tactile defensive”. How can I explain this so doctors understand? – name withheld by request

Hi there, and thanks for your terrific question (and for giving me permission to publish it on here!).

So, for starters, I gotta be honest – I had never heard of the term “tactile defensive” before you educated me about it just now. I probably could have figured out what it referred to, but I would have been guessing. Certainly, if a patient (or more likely, a nurse who had just talked to a patient I was about to see) informed me that the patient was “tactile defensive” or “wants to avoid physical contact if possible”, I would initially wonder if the this was a clue to an underlying phobia or abuse history, or perhaps related to the patient’s cultural background – but if the patient explicitly stated that it was “associated to my autism”, then at least for *this* doctor, that would be sufficient explanation.

Here’s the tricky thing about doctors, though – we often deal with patients who have a “hidden” or underlying reason for a particular behavior, and we have been trained to be curious people. So, if a doctor were to ask you a few “nosy” questions about possible germ-phobia or a history of abuse, I think it would be more of a sign that the doctor was trying to understand you + trying to avoid “overlooking” some diagnostic significance to your dislike of physical contact. Please don’t take that as a demeaning insult or attack or accusation of dishonesty. The average primary care physician is more likely to encounter someone with an anxiety disorder or a history of abuse than someone with autistic tactile defensiveness. You have a relatively “unique” finding, and doctors always like to poke at unique findings a bit before moving on.

But, here’s the thing about tricky doctors – if the doctor can’t abide by your request to be warned before being touched during the exam, scoffs at it, or makes a game out of it and intentionally DOESN’T warn you “just to see what will happen”, then all the power is in YOUR court. You now have the right to (a) firmly (but calmly) state, “I already asked you to not do that” or “Could you please talk me through as you do the exam?” – or (b) you could ask for a nurse to be present during the exam, which is usually enough to remind a doctor of the importance of working within the patient’s special needs, rather than being a obstinate pighead trolling for giggles.

And if those nice reminders don’t work, well – I’m not trying to stir up trouble for all the good doctors out there, but technically, “laying hands on a patient when the patient has stated that he/she doesn’t want to be touched” fits the legal definition of “battery” or “physical assault” and can be grounds for a lawsuit. Usually, the patient’s implied consent for a routine physical exam is assumed when the patient presents to a doctor’s office, and usually the doctor would only ask for specific permission before doing an “intimate” exam (such as a pelvic or rectal exam) or a procedure. But a doctor who has been requested to “go ahead with the normal physical exam, but please inform me before you actually touch me, due to my medical/psychological condition” should hopefully be extra careful about following that request – especially in the presence of a witnessing nurse or family member.

I hope that helps somehow. Feel free to let me know about your future medical experiences with this issue! And perhaps other readers with similar conditions will add their own advice in the comments.