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?
This must be awful for you and it's really sad... But in the end, it take two parties to be willing to talk. If they won't, you can't make them.
Ausomely Autistic said:Employing more autistic people in healthcare
Many autistic people struggle to get qualifications, complete courses and once in employment find the world of work difficult. So if we are taking this route, autistic people need support to be able to achieve these things in the first place.
I think that's my problem, even approaching them with the idea fills me with dread. I know they'll talk me out of it, they'll tell me about how these services just want to tear families apart (which is what they said the last time I tried to get an advocate and they sent a letter to my house...).
It seems no matter how much I try, I can't get across just how much I've struggled over the years.
Dawn said: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.
Exactly! I completely understand, you are somewhat on the same wavelength. Employing more autistic people in healthcare settings specifically for autistic people would give patients security and reassurance in knowing we could be fully understood. Furthermore, it could reduce the overall demand on healthcare because we would be treated by our neurokin who fully understand our nervous system and our autistic body language. So many of us are not believed about how much pain we are purely because we don’t respond like NT’s.
There is an example of this in an episode of the podcast 1800 Seconds on Autism:
‘I don’t know how much pain I am in’
https://spotify.link/2GOlZOcVsDb
"Advocates" generally advocate with services and institutions.
But what you are describing, is similar and - not that I'm an expert or anything - but does sound like the sort of thing a family therapist might do. Why not ask the family if they'd like to explore that?
I wish that was easy to get hold of. I guess my thinking with the advocacy stuff was that someone would basically get the points across to them for me but I don't know if that's even something anyone does.
It does sound like some sort of autism informed family therapy might be a starting point.
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.
I've tried to write things out, but I don't think they've fully taken it in. I feel small every time I try.
There's glimpses here and there but there's been too many cruel things that have been said (even within the last year) that indicates to me that there's not much learning going on.
I don't think they're actively resistant but I haven't found the right approach.
How open are your family to engaging? If they are resistant to the idea... might not go anywhere. But there is such a thing as family therapy, if you can find it and they will do it. They would listen to all and help reframe the points made so the others could understand.
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.
Exactly this Dawn.
I have basically been trying to find an advocate for two years for my own personal matters (mainly my immediate family not really getting autism despite me having had a diagnosis for 17 years).
I've been afraid to actually do it because I feel like I'm dobbing them in, but I'm at that stage where advocating for myself isn't really working because I can't exactly overcome autism and I'm not getting any more comfortable or confident with it.
It does seem to be a common theme for me; avoiding accessing support out of embarrassment and fear, which doesn't really help me.
Adult social care didn't really do much for me either. If there's any advice anyone has I'd be welcome to it.
That's insightful, actually.
I'm a linguist by training and often think of the difference between NT/ND communication in terms of two people who speak different languages. Whose responsibility is it to get the dialogue going? Well, in most contexts, both equally, of course. But when accurate communication really matters - say in a court room or a hospital, when one party maybe too vulnerable to jump through grammatical hurdles in a language not their own, we get in an interpreter, do we not?
In our case it seems, that ALL the responsibility is left with us and no one gets that an interpreter is required when we are vulnerable.
Exactly!
You know what dawn, there are many people whose first language is not English - they also have a communication difference and so access to an interpreter. Autism is classed as a communication difference so it really makes sense to have an advocate. This could potentially plug a gap between autistic people and professionals who have not had sufficient training. Rather than training absolutely everyone up, if we had advocates they woukd be the middle man.