Thread🧵My experience with A&E doctors last week who failed to understand my Autism and the seriousness of the situation which could’ve lead to me developing blood clots. #Autism #autismacceptance #ActuallyAutistic #allautistics #AutismAwareness #AutismTraining
Over a month ago I developed the cold sore virus in my mouth that wasn’t too bad to start with but it ended up developing quite severely due to my poor immune system. I was managing okay but eating less and less as it was painful to do so… last week it got to a severe point
I was unable to eat, drink, couldn’t talk without severe pain and I had lost 7kg in weight… I was unable to take my medication that is strong pain meds for my chronic pain and unable to take my mental health meds and my blood thinning medication that stops me developing clots.
Both my GP and mental health worker wanted me in hospital as they knew how serious the situation was and that with my Autism, physical health conditions, chronic pain I wasn’t coping sensory and mental health wise. It push me into a suicidal state as I couldn’t cope
I went to hospital and was put on a fluid drip and given antiviral meds to take home which I said I couldn’t take due to my mouth being so sore but they wouldn’t listen. They discharged me and sent me home.
I ended up being sent back the next day by my GP and this time I was met with some rather ignorant Doctors in A&E. Despite knowing I wasn’t able to take my blood thinners that literally keep me alive and that I wasn’t drinking or eating… they didn’t seem to care at all
They were rather adamant about sending me home with medication. Despite me explaining to them I can’t take it and also telling them I haven’t taken my blood thinners in a few days and I have a history of developing clots quickly they just didn’t understand the seriousness
I also said I’m Autistic and sensory wise I cannot manage tablets, dissolvable tablets etc and only can cope with capsule form due to sensory reasons. I said I can’t even manage capsules at present due to the pain in my mouth but he treated me like I was being difficult
The doctor treated me like I was purposefully making excuses and being difficult just to get admitted. Which wasn’t true at all. He told me that if he admits me and treats me with IV anti virals then It would reinforce my thoughts that I couldn’t take the medication orally
Even though I explained my Autism and sensory difficulties with texture and types of medication. He generally thought it was something I could just get over and that it was a choice to not take the medications. But that’s not that simple for Autistic sensory struggles.
Doctor also wasn’t grasping the seriousness that I couldn’t drink or take my mental health/physical health meds. He wasn’t understanding that I was in extreme pain and I was in sensory hell. I wasn’t coping mentally or sensory with the pain. I was so overwhelmed I wanted to die
I was at breaking point. The doctors sent me home… only for me to end up being brought back about 4 hours later screaming in pain as I had no pain meds controlling my chronic pain. I was also getting pain in my chest like when I had a blood clot last year.
I was taken to triage room where 3 nurses were there… there’s usually only one. They were reinforcing what the doctor earlier said and I explained he wasn’t understanding my Autism and that I couldn’t take anything orally due to the pain.They just kept saying I will be sent home
At that point I was already at breaking point and I had a full blown mental breakdown. I was apparently repeating “I can’t cope” “I want to die” but to them they saw that as me not being serious and that I was just trying to get admitted 🙄
I honestly was at the point I wanted to die as I couldn’t cope anymore with the amount of pain I was in. It was too much. I didn’t want to be admitted but I NEEDED too otherwise I’d end up developing a blood clot or I’d end up ending my life due to the extreme pain
I was becoming dehydrated so much. They wasn’t understanding or caring of my Autism,mental health or physical health. They didn’t seem to believe or accept my Autism and sensory difficulties or that I had a history of developing clots sometimes a day or two without blood thinners
They were so dismissive. I ended up being put in the Secure mental health room and another doctor decided to put a cannula in and give me fluids. Then they wanted to send me home. Luckily the night shift had changed and a lovely lady doctor saw me and was understanding
She was understanding of the seriousness of the situation and got blood thinner injection into me straight away and fought to get me admitted. She understood my Autism, chronic pain/ health conditions and my mental state. She saw I wasn’t coping and was in extreme pain
She understood that it wasn’t possible to go home and take medication like the other doctors were wanting me to and she LISTENED to me and my dad. If I can’t drink or eat how am I meant to take medication to get better? She knew I would end up dehydrating again or getting a clot
She seemed very frustrated with the way the two male doctors and the A&E staff treated me. If it wasn’t for this lady doctor I’m not sure if I’d still be alive right now. She got me admitted and put on antiviral IV and fluids and a pain medication that goes up your bum
It helped a lot, and I was given mouth spray that was a minty taste that I could cope with and helped numb my mouth so I could take some of my medications. Sadly the antiviral didn’t come in capsule form which is why it needed to be given via IV.
things slowly started to improve and I managed to eat slice of bread with a lot of butter on. We found that was one of the only things that I could manage. So for the last 5 days I’ve had bread and butter for every meal.
I’ve also managed to start drinking fluids so I no longer need the fluid drip. I figured a way to drink so the fluids don’t touch the bottom half of my mouth. I cup my tongue to the roof of my mouth.
I got moved to a side room too which is so much better for me sensory wise. I can have the lights off, I also have a tv for distraction and I have my own bathroom so I’m much more relaxed and I’m able to sleep.
I have a couple more days left of my antiviral IV medication so they’re keeping me admitted and then decide if I’m well enough to go home. But I’m not on as many pain meds, I’m able to sleep and rest too. I’m starting to improve and feeling better.
Doctors need to understand Autistic people and how Autism presents differently and also understand how sensory needs can include medication/ texture/ taste of it. Some Autistic people cannot manage certain forms of medication. It’s not a choice. And they need to understand that
Doctors need to sometimes alter the way they treat Autistic people who are unwell in A&E…if they’re unable to take medication orally then they need to accept they need to treat the patient with the medication via IV. Doctors need to treat patients and support their sensory needs
But earlier today the Learning disability and Autism practitioner with the safeguarding team who are based in the hospital came to see me and I told her what happened. She seem very frustrated on my behalf about how I was treated
She got it sorted on my medical record on the system that explains my sensory needs, my Autism and some of my difficulties to try and make sure I’m not treated like I was again. And also said about getting A&E staff better Autism training.
What was bad was when I saw Mental Health liaison team they were influenced by what the doctors said to them. They thought I was saying I wanted to die just to get admitted. Which wasn’t true. I was so overwhelmed in pain, fed up and couldn’t cope and I really did want to die
I wasn’t taken seriously that I was wanting to die. And they didn’t understand my autism and mental health and my current situation and basically sent me home to die. I wasn’t able to take my meds so I would’ve developed a blood clot, I would’ve dehydrated and also
I could’ve got so overwhelmed with pain and might have tried to end my life due to not being able to cope mentally or sensory with the extent of the pain.
Would be good if @SuzieJaye could deliver some training to A&E staff about Autism/sensory needs/different autism presentations and also about adapting treatment options to support Autistic persons sensory needs. And maybe train MH people not to be influenced by negligent doctors

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