Published on 12, July, 2020
Slightly frustrated... I have to have a hospital procedure. I mentioned in a preparatory telephone interview with a nurse (?) that I am probably autistic and don't respond well to being touched/handled, which is obviously inevitable in the circumstances. She didn't seem to get it. Initially her repeated response was that everything would be explained at the time, as if this is going to help me. I don't need it explained. I understand the procedure perfectly - and it isn't anxiety about the procedure that's the problem - it's the actual proximity of people and the TOUCHING. I finally seemed to get through to her by telling her that I can react badly to physical contact. She asked whether I might be violent. Fair question. But no... My distress is likely to cause me to tense up and freeze, shut down and become uncommunicative. So, I'll have sedation, but I don't know how much this will help. Meh...I made it clear that I wasn't telling her because I was asking for help or reassurance. I thought it important that people dealing with me know how I am likely to react and what the cause is. Otherwise they are likely to misinterpret my reaction.Anyway, maybe I have chipped away just a little at the ignorance surrounding autism. Clearly she was quite unprepared for it.
I know I need to do that some time. Just not got around to it yet, partly because I haven't yet worked out what I might put. It's all rather complicated, but obviously needs simplifying for something like that.
I had not heard of this Bunny. Thanks!
That is a great bit of interesting psychology, Fiona. (I'm refering to the "not")
You need to give clear guidelines over what is acceptable for you. I suggest you use this experience to generate content for the health passport Bunny mentioned, as it is easier thinking about specifics than dealing with imaginary scenarios.
"If you come closer than 6 inches, I need to know you are coming, why, and what you are doing. Then I can work out how you will be able to do that thing without distressing me."
Try to avoid the negatives, telling people what not to do often leads them to do those things, as if they forgot the word "not" was even mentioned.
Just a suggestion: it might be helpful - including for those treating you - to take a “health passport” along to your appointment. It includes a section for specifying your sensory needs, and also could save you from having to keep explaining your needs whilst you're dealing at the same time with the day's many other stresses.
"‘My Health Passport’ is a resource for autistic people who might need hospital treatment.
The passport is designed to help autistic people to communicate their needs to doctors, nurses and other healthcare professionals. It was developed by Baroness Angela Browning – an National Autistic Society Vice President – in collaboration with The National Autistic Society."
More information, including the links to download a both a blank passport and the guidance notes for completing and using it:
My health passport
I hope that all goes well with your procedure.
Yes. I shall have to give them lots of helpful advice! ;-)1) Please don't get closer than you need to.2) Warn me if you need to touch me.3) Speak slowly and clearly and give me a moment to process (I also have hearing loss).4) Please understand that sensory overload caused by being in a strange environment with a lot of strange people may distress me. I am liable to shut down, but I sometimes try to cope by talking and trying to amuse.
I have a similar problem, but mine is about people leaning over me when I'm drowzy and in pain, like when recovering from anesthetic, I am likely to lash out in fear and it's an unthinking response thats trauma based. When I tell them why they seem understanding, I ask them to approach me from the front and not loom over me and it's never been a problem. I do however find that theatre nurses who come round to talk to you before your op are more receptive, I also ask them to make sure my neck is straight and aligned when they either move or intubate me as I have neck problems. Apparently this is the sort of thing they want to know.
I find them more receptive if you can tell them what the problem is, then make suggestions. The nurses that phone you up seem much less receptive than the theatre nurses who will care for you imediately before during and after a procedure. I'm not sure theres a way around not being touched when ones in hospital and can't do a great deal for oneself. I remember feeling quite ashamed of having to have someone dry my legs for me after a shower, nobody had needed to dry my legs for me since I was about 10!
Could you have a safe word maybe that's on your notes for you to say when it all gets to much?