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?
Hi Dawn
Thanks for another great post! You are definitely right about this point below.
Dawn said:s some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies.
I think there should be a team of autistic people in every GP surgeries including, doctors and advocates who can accompany us in appointments and explain how our nervous system works differently and how that can impact our health.Our fellow autistics who can act as advocates would be experts by experience.
I also think that health professionals should receive training obviously on our autistic experiences but also more specifically about our interoception differences. This would help them to understand why we respond to pain differently and how that may result in delayed treatment.
I also think this would help to bridge the Double empathy problem. Also I think that we should receive health checks annually purely because we may not recognise changes in our health due to interoception differences.
Yes, I like the idea of employing autistic people in these roles.
Generally speaking, something in me sighs a massive sigh of relief when the professional I am dealing with shares with me that either they are autistic or someone close to them is. Suddenly, I don't have to fight to be understood and a conversation that would otherwise have taken an hour, is reduced to five minutes.
I wish I had a GP who was themselves autistic. That would get over a lot of hurdles.
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/
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!