Communicating with health professionals

I think to some extent the judgement starts before I walk through the door and say anything. Once you're labelled as an 'anxious' patient it sticks. Any physical symptoms are usually put down to anxiety. Sometimes I think I could walk into the surgery with a severed arm and get told it was just anxiety!

I am hypersensitive to internal bodily sensations and usually have a good sense of what is anxiety and what isn't. There have been instances in the past where the GP has reluctantly referred me for more tests, making it clear what a waste of time they thought it would be. I was proved right and the tests confirmed something which the GP had dismissed as extremely unlikely.

I find the best experience is when I get a locum GP who I haven't seen before and they do seem much more willing to listen.

Oh I hate that, when they call it a phone "appointment" but unlike a real one they won't commit to a time. If they could even manage an approximate 2 hour window it would help! Phone calls are stressful anyway, but I don't like going in.

I haven't even tried with phone appointments as I've literally never had a successful phone call about anything (despite many attempts!), healthcare or otherwise. The other person 90% of the time hangs up on me because "it's clearly a bad time" when they realise I am slow at processing auditory information. My GP allows you to book in person appointments online so I do that. They release appointments once every two weeks for the period 4-6 weeks later and if you're quick you can grab one.

Hi Dawn, how do you get an advocate? Thanks.

Im sorry you have bern dismissed. I wrote notes in advance but it doesn't help when they say they will ring anytime on the day. Catches me off guard.

That's shocking! Both situations!  It really does depend who you get. I understand doctors are only human like everyone else but it's when you get one thing off one and one thing off another. (One GP said to me once about something "oh we all get like that from time to time". I realised after that I wasn't using the right language to explain the problem).  I know everyone across the board is having problems but when you are autistic but present as "normal" I think sometimes it's the difficulty in advocating for yourself. I know not just from my experience, other people get asked "and what do you want us to do about it?" I know patients are more informed these days but, come on! They're supposed to tell us what to do about it!

I entirely get where you are coming from with this. I have been there many times myself. I don’t ask for help from medical professionals often, so I almost feel like I will be ‘taken seriously’ when I do get in touch. It rarely happens that way though. I had an example recently where I had some worsening symptoms, so eventually plucked up the courage to contact them. During the phone call I explained that, whilst the symptoms were to be expected, they were worsening and I wondered what I could do to alleviate them. The fact that I said all of that was not even picked up on and the person went on to explain that the symptoms were to be expected with what I was experiencing and to get in touch if they worsened. Which is exactly what I was doing! In the end I waited a bit longer and spoke to someone different, who actually provided some advice that helped.

It’s tough contacting someone when you know that you are likely going to be dismissed anyway.

In one instance I was even told I needed counselling to deal with an issue I was experiencing, it turns out, like I’d been saying all along, that it was physical and not mental, so I saw someone else and I needed an operation! Problem solved since then. I still laugh sometimes at the idea of sitting in a room talking to a therapist whilst they tried to convince my body to repair the problem.

The only time I've ever managed to get a GP to refer me to a specialist, I practiced for an hour a day for the 28 days that I was waiting for the GP appointment. I also wrote two pages of notes, which took three drafts to condense and make as clear as possible.

Every other time I've been in with anything (daily diarrhea for 30+ years, suicidal thoughts, anxiety so bad I could barely leave the house) it's been dismissed. The GP uses any pause to change the subject to cervical screening (none of my issues involve the reproductive system) as they see me as an opportunity to hit their screening targets. The only way to keep them on topic is to keep talking, keep presenting information, keep hammering home the key message of "this is the problem and this is what I need from you today."

It's exhausting.

t might.  Again depends on how willing the GP is.  The GP I was with wrote in a letter on the one had that I "suffer with Autism" and yet on the other was reluctant to make reasonable adjustments until my advocate intervened.

I switched GP for logistical reasons.  they are building a new surgery near my house.  They could not possibly be nicer.  They really wanted to know about it and how to make things easier for me.  If your GP isn't accommodating after you write, I'd shop around other surgeries asking if they have someone with some experience of Autism and then transfer there. 

I can relate to what you say. I think because i don't overegg things like other pepole do, I just state the facts, it can be misinterpreted. And probably after years of masking, I'm used to being able to hold it together and appear fine on the outside when i'm really not. I totally understand about the pushing yourself and leading to burnout. I'm sure many people can. It's not just about explaining "autistic" stuff but other things which are physical which I find difficult. I think they help as much as they can. There's so much pressure and so many people to get through, I know it's not just autistic people who have problems in this sense. But it's when I feel like I cannot get my point across or that I'm not being listened to. It's frustrating. I have to remember though I have had some good experiences. But on the whole I just feel really cynical everytime I have to speak to someone.

Thanks Dawn. I didn't know about the advocate thing. My partner can step in but it's not always practical. I don't even know if they know about the autism. I don't know what's on my records. It was a private diagnosis but I had discussed it with my GP afterwards and have mentioned it to other GPs. It doesn't help that I never get to speak to the same GP. Writing to them is a good idea but I dont think it would make any difference whatsoever.

I get it and I've been there. It doesn't matter how hard I try to explain how I'm not coping they don't understand. I just get fobbed off or they suggest things which are totally unsuitable. They judge on how I present right then and don't see me in the middle of a meltdown. That usually happens later, once my mind starts to process what has been said to me during the encounter. 

The thing I hate most is being told I just need to 'push myself' to deal with my anxiety. I have spent a lifetime pushing myself and that's what got me into the state of severe autistic burnout 

I think it's partly a lack of understanding of autism and partly a reflection of the dire state of our health service. Things have to reach crisis point before they even start to listen. The 'why didn't you see us sooner' is just to try and cover their own failure to listen earlier.

I know the feeling.  Been there.  I think a lot depends on the doctors and how much understanding they have - or are willing to have - about autism and the difficulties in describing what's wrong, or why you may be feeling things physically in a different way, or just generally finding it hard to talk to them.  They need to take more time with you and get to the problem slowly.  they are all so harried these days.

I wonder if it might help if you wrote to them and told them in writing what you are finding so hard and ask that in light of the fact this is rooted in your autism they could please make and effort to help you communicate.  Failing that you can have an advocate.  It's a free service, but probably only any good for planned stuff.  It may not help in an emergency.

I've spent an hour crying. Because I can't go around smashing everything up in the house. I think this is a mini meltdown. Because I rarely feel listened to when I speak to the doctors.