Published on 12, July, 2020
Thank you to all of you who responded to my last post.
On a personal level, it's comforting to me to know I am not alone in experiencing these problems. Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.
On a practical level, I was hearing a number of things in that discussion largely around how to access GPs etc and the absence of reasonable adjustments to communicate with them etc. Clearly, there is a need for a huge amount of training in this regard. There are further issues with respect to the physical and psychological misdiagnoses and unhelpful or inappropriate treatments sometimes arising from professionals' ignorance.
I have also dug into the helpful links provided by Autonomistic on Autistica's work to progress the issue of annual Health Checks, akin to those offered to people with a Learning Disability.
This post is specifically about advocacy.
Given that so many of us have difficulty in self-advocating in medical environments, to the point of not even getting through the GP's door and past the receptionist to self advocate, what are our thoughts specifically with respect to a service to help us get into the surgery and communicate with the GP. (Email can do a lot, but regrettably we can't be physically examined by e-mail. We have to go in sometimes!)
My ex-husband who was a nurse used to advocate for me. He could approach the reception desk for me, make the phone call for me, intervene and explain what the problem was when I could not find the words, explain what was happening when sensory overwhelm was pushing me into shutdown or meltdown, negotiate reasonable adjustments for me, even made medical decisions for me, when I could not.
Without his help now - I'm stuffed. Can't get any health care at all.
It seems to me that what is needed to plug the gap for those who don't have a family member to step in, is some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies. No such service appears to exist at present. I've been trying to find one for two years. Adult social care won't help, existing advocacy services don't go to GPs appointments with people and it takes weeks to get an advocate anyway and the Learning Disability and Autism Team are only commissioned to be doing this for people with a learning disability.
So, do you think this is a good idea? What would such a service look like to you? What would you want from it? Would this make the difference between getting to and through an appointment for you?
Great!
I just have :-)
You are very welcome! Not all of the organisations are London based some are national/international.
Dawn said: I've skimmed through just now and ...Neurodivergent Labour - I'm a party member and didn't know they existed!
Do you want to join?
Once again, thank you!
I no longer live in London but some them might be nationwide. I'll be digging through them all later. I've skimmed through just now and ...Neurodivergent Labour - I'm a party member and didn't know they existed!
Dawn said:Hey maybe we should write an autistic/neurotypical bilingual dictionary to help negotiate the double empathy problem - bit like a travellers' phrase book!
Great idea! That would be cool! What would we name it?
Right up there with 'neurosplaining', lol
Hey maybe we should write an autistic/neurotypical bilingual dictionary to help negotiate the double empathy problem - bit like a travellers' phrase book!
Hi again Dawn
Here is a list of autistic advocacy organisations that you could contact regarding accessing healthcare:
https://www.londonautismgroupcharity.org/autistic-advocacy-and-activism
I hope this helps you with your campaign!
Yep! Get all that.
I've just had a call with someone who gives specialist advice on this actually. They are of the same opinion as me, we are identifying a gap in service provision here which the ICB need to accept responsibility for and plug in order to ensure that we get parity of access to health care.
You might well be bravely soldiering on alone in the doctors, but there are risks if the communication creates all that confusion. What might they miss?
You can add it your autistic language dictionary!
Thanks for the compliment! I am very happy to be your research buddy! I have a reading list full of hundreds of articles about our autistic community , hence the numerous links I post!
I love a good autistic research deep dive and the flow state that ensues!
I hope you find the links useful.
I think this is a great idea. It would definitely help me as I don't have anyone to be that middle person to help me with doctors, which means I've got to do all the talking and explaining myself which isn't easy and usually leads to a lot of confusion with the doctors...
My doctors are in the dark with me, some try to understand, others don't, most just say I'm in need of mental health services and give me some Sertraline. That's my doctor's go to remedy for me.
Funny enough I did look for a service where someone who specializes in autism could help me with doctors but I couldn't find anyone who could do that in my area. I think it's something we could definitely do with as there's no autism training with doctors currently.
I was in hospital with an infection a couple of months ago and there was little autism training with the staff there as well. I said about the bright lights and that I was very anxious and a nurse rolled her eyes... I think she thought I was being fussy but it's not that, it genuinely does cause me a lot of discomfort especially as I was already worked up being in the hospital and having to stay until I was better.
More understanding would be nice. My cousin is going into nursing with the NHS and because she's aware of me and her daughter who also had autism she said she'll try to spread the awareness to others in her field.
Small steps leads to big things.
I'm relieved to hear you've come through the cancer.
GPs seem to get a once over of the diagnostic criteria in med school and that's it. That's the medical model of autism, of course, with language focused on all our so called "deficits".
That probably explais why my GP who does want try, sticks his foot in it at the get go by apologising for the fact he can't "cure" my autism. (SIGH).
GPs can't be expert in everything. Get that. But they do seriously need training from those with lived experience.
Autopia! Love it, stealing it and adding to my lexicon :-)
More links to follow. You really are the perfect research buddy.
Yes fully recovered thanks, no problems from that department anymore. My doctor never did apologise but I now see a different GP but she isn't fully aware of autism.
I'm sorry you're own doctor doesn't listen to you and your health complaints. I'm hoping that one day doctors will actually be given autism training, it's something that's definitely needed as it's being encountered in the medical sector more and more now.
Dawn said:Yes, I follow them on LinkedIn.
Cool!
Dawn said:I wish we could set up a GP service just for autistic people in every town and headhunt all the autistic doctors, nurses and mental health professionals and receptionist to staff it. They'd be happier in their work and we'd be happier with the service - utopia!
I wish we could set up a GP service just for autistic people in every town and headhunt all the autistic doctors, nurses and mental health professionals and receptionist to staff it.
They'd be happier in their work and we'd be happier with the service - utopia!
Ditto, this would be in our combined vision of Autopia!
Autopia video - Aucademy:
https://www.youtube.com/watch?v=rPo-f4Ea4-U&t=1182s&pp=ygUQYXV0b3BpYSBhdWNhZGVteQ%3D%3D
Also in case you didn't already there is an autistic led neurodiversity affirming healthcare service in the USA called All Brains Belong:
https://allbrainsbelong.org/
Seems great!
Yes, I follow them on LinkedIn.
Oh Lord! Have you made a recovery from the cancer?
And yes, it's about more than mental health misdiagnoses. Doctors haven't understood my physical symptoms either at times. But I've never faced anything that serious.
I hope your doctor learned a lesson to listen to you and other autistic people next time.
Hi Dawn,
You're amazing and I hope you know how much we all appreciate your efforts.
Many times I've been called delusional because I presented with problems but doctors didn't believe they existed because there was no 'proof'. My tiredness and sore throat eventually revealed itself to be mouth cancer, my doctor didn't have much to say after that!
I wish we were more heard and understood. A lot of it is medical professionals don't even try to understand us, they just assume, normally that we're not really ill when we are and that we're suffering mentally.
I think everything you suggest is an amazing idea!
If they knew just how bad I find myself feeling they might approach it differently but I don't know how I'd get that across to them as a starting point.
I'd often think I need to force myself to have a big meltdown or something.
Exactly I agree!
Dawn said:I wish I had a GP who was themselves autistic. That would get over a lot of hurdles.
Absolutely! There are definitely GPs who are autistic but they may not be openly autistic:
You may be interested in this:
https://autisticdoctorsinternational.com/