Question- ASN related

[asnhelp]

I really hope this comes across the way I intend it to. I’ve seen similar posts on here before so hope it’s ok to ask here. I want to keep it anonymous as I don’t want to be outing but I’ll try and explain as best as I can.

im a healthcare student in training (think along the lines of medicine- its a course very similar to that!) and I’m about to do a placement type experience with patients specifically with asn. This will be over the next few months and will include a range of patients with varying disabilities and needs. The aim is to get us used to assisting patients with different needs, changing the way we speak/behave as appropriate and most importantly not accidentally doing anything to cause offence. Just to get us more confident and experienced all round.

i am so nervous for it.

we recently had a course about ASN and I will be 100% honest, there is nobody in my family with ASN and I had no idea how many barriers there can be and it was a shock for me to learn it. For example, waiting for delayed appointments can be extra difficult for patients who may have a routine and struggle with it changing, or even simple things like patients not being addressed or even acknowledged and everything going through whoever has brought them, as if the patient doesn’t even exist. Other things were patients who struggled with communication having sentences finished for them or speaking to the person as if they are younger just because they are disabled (I like to think I wouldn’t have done this but apparently lots of HCP do which is awful)

We heard some real life stories from patients about how they felt when they were treated incorrectly/inappropriately for their needs and it really shook me up and upset me to think I wasn’t aware of it and could have accidentally caused offence.

im so nervous for this placement now- I want to do the absolute best I can for every patient and I don’t want to cause any sort of offence or insult.

i just wondered if anyone had any advice, tips, or words of wisdom of things that are offensive or challenging for you or someone you know with asn in a healthcare setting? Or if anyone has ever experienced anything that was particularly helpful or made a big difference in a good way?

hope this is ok to ask, I just hadn’t appreciated how many barriers there are and it’s opened my eyes a bit and I really want to do the best I can but I’m just worried about it x

I should have included in my original message- I know that posts asking for personal experience or advice are often journalists- I’m NOT, I’ve just NC but I’ve posted a lot before (MN can confirm) x

Just giving this a hopeful bump x

ASD here, diagnosed in my early 40s, uni educated with postgraduate degrees, often get the "Oh but you don't seem autistic" line when disclosing at work etc (urgh).

When seriously ill/injured I don't necessarily present as being as ill/in as much physical pain as I actually am as I mask as default. It is not obvious to others when I am pushing myself too much or about to collapse. People don't believe me when I tell them! (This has e.g. led to me being discharged and nearly discharged when I was seriously ill, and not being given treatments or monitored regularly until a NT family member kicked up a fuss - at which point, oops, blood transfusions and IV antibiotics).

I personally have odd reactions to painkillers and some anaesthetics. I prefer to avoid these if at all possible as they either do very little for pain or make me throw up a lot. This may be the ginger gene rather than autism - not sure. If I am actually willing to take pain killers, things are serious. Without painkillers I can often manage to almost switch off/zone out my awareness of pain/dial it down and just get really sleepy instead. As pain is the body's alarm system this is about as helpful when seriously unwell as disconnecting the smoke detector.

I definitely have some trust issues in certain healthcare settings given previous experiences. This wasn't always the case. I may be blunt/seem not to respect social hierarchies - that is down to not seeing them and focusing in on the info I need. Honesty is important to me, as is understanding reasons behind decisions/choices. If you lie or misrepresent an event I will not be able to forget (My memory is spectacular).

That being said, I don't take offence easily. I worry more about facts being right/correct/ actions being safe than about how it will land with others or noticing social stuff, including social stuff affecting me. I also live in the neurotypical world and have done all my life, so while I will never be fluent, I can probably interpret/translate a lot of stuff for both of us. (This may go out the window in an emergency, but even then boils down to: listen to me and believe me even if what you are seeing do

I also never use 10 words if I could use 1000.

Is that a good start?

*if what you are seeing from body language doesn't seem to match

(My son just grabbed my arm in his sleep and I posted too soon - sorry!)