Published on 12, July, 2020
For the second time, I was told by a GP that I "suffer with autism"
No I don't. I am autistic and any suffering involved comes from my needs as an autistic person not being met predominantly, in fact, in health care settings.
Grrrrr! Partly venting my spleen here, but at the same time I know this faux pas is born of ignorance not wilful intention to insult. This GP was trying to be sympathetic, I'm sure. He does not seem to know much about autism though since he's asking the patient who has diagnoses of autism, dyslexia, Irlen's syndromes and has further been identified as a synesthete, whether I have an SPD diagnosis - excuse me while I bang my head on brick wall (metaphorically, of course).
Then he stated I "suffer" with autism.
Are you folks getting the same from health care professionals? And how do you go about correcting them?
This obviously isn't his fault. It's just ignorance because he hasn't been trained. But none of us is getting very far, if our GPs don't understand what being autistic means. I'm wondering if it's time I popped my old trainer's hat back on and offered to do some training sessions for them free of charge.
Bump
I agree even more with this now. There are many instances where my brain and mouth do not connect but this isn't my problem as such it's to do with how I communicate. I've realised if I am asked outright I will give the required information, but if it's up to me to read the situation and give this information without being asked specifically, or to infer that now it's my turn to speak up this doesn't always happen. I now totally can see the double empathy problem in action. I can see why I get frustrated that I don't always get what I need from situations. It's not about lack of confidence, it's about a different way of communicating. I feel because of this, even though I can advocate well for myself, I'm often going to be on the back foot. It's a constant learning curve to adjust ourselves to other people or state exactly what we need but how can we do this if we aren't properly aware of our differences? Not to mention, the processing involved and yes there is a delay. I feel it doesn't matter how much "awareness" someone has of autism, if they fundamentally communicate differently, there's always going to be a difficulty. This is what masking is and health professionals need to be more in tune with what's going on.
Oh I think that's very much it. If it's got a womb it must be hysterical. Give it a slap! Truely, Freud has a lost to answer for.
It just feels like a hangover from the days when women's varying & genuine health issues were disgracefully dismissed as merely them being 'hysterical' or even attention-seeking.
Oh yeah! I was written off by MH that way. I found my own way to my diagnosis.
Certainly, I have heard of one other in our family who was thought to have sever MH problems, but it the surface descriptions seem to emerge in toddlerhood and sound very much like autism and/or adhd to me. I'll never know, but I think there were others who never knew their truth.
Certainly, many of us are dyslexic or dyspraxic and I have other autistic relatives.
I don't know whether you'll feel this is relevant or not, Dawn, but this is something I eventually realised (decades too late):
The women in my immediate & wider family who had mental health difficulties, and were possiby autistic, were instead written off by professionals as either silly, stupid, frivolous, stubborn or 'problems'.
Absolutely. Cut backs are ultimately a false economy as they generate more problems and more costs down the line
Not to mention the money on social security that is paid out because everyone in this culture is suffering from mental health issues. We should help people become functional in society a lot earlier. I'd to think that things will change...
I completely agree.
A change in the uk culture is needed so there is more funding for services.
Yeah, money the root of all evil. It could save the NHS a mint though in the long run by giving us the right treatment at the right time and saving unnecessary repeat visits or little problems developing into big ones.
There must be but budgets are stretched as it is and anyone important enough who can make these changes probably isnt even aware there is a problem.
I think ultimately we need specialist autistic health centres to be our GPs (preferably staffed by doctors, nurses, receptionists etc who are themselves autistic) with links in to all the other services and with co-ordinators who can communicate our needs when we need those services and possibly autism informed counsellors.
There must be enough autistic people in any one average size town to warrant such a service.
I think a lot of medical professionals really try their best but I've realised it's two different languages. I'm with someone at the moment who really tries and seems like they've got some awareness but at the end of the day I've realised I'm still masking because of how they communicate. So I'm questioning now whether between us it's worth any of our time.
I think I will always be on the back foot in these situations.
That looks interesting but they should have an online version. I am still not attending in-person things. Plus I vastly prefer online and no trouble parking!
Yes, I had that a lot prior to my diagnosis. I could never quite express what was wrong, not even rate pain for them, in a way they understood and then they'd get shirty with me thinking I was just being difficult.
I can see now that we were just speaking different languages. Now they know I am autistic, they are more patient, but they still don't get why it's difficult for me to express the problem or receive the information from them. That's where I really need a go between to ensure I am actually getting any health care.
Ahhh that's rough. I think I used to be like that because the power dynamic caused by their medical authority and you are in THEIR work place sets off a kind of anxiety like you feel like you aren't allowed to question them in anyway or that if you do they will just squash your concerns down rather than actually reassuring you. I can't remember exactly how I broke out of that now, but I know at some point I did.
Exactly. I can self advocate until the point I am in a medical situation, and can't communicate at all. That's when I need everyone to understand, no body does and I can't tell them what the need is.
Yes, indeed. I read a lot of Strategy and hear a lot of language about acknowledgement and acceptance, but hear no real understanding or see any services in practice.
I don't think I would try. Honestly it's too exhausting dealing with how NTs, especially those in the healthcare system. Its medical model all the way there.
Sad, but I have just sorta written off the NT world, for the most part.
That said, today I wrote a complaint letter to an organisation, so I do care, I just know nothing changes,. The NT way is to just make a superficial appearance of change, then carry on as normal.