Published on 12, July, 2020
Hi I’ve just been in an extremely difficult situation. I’m a 52 autistic lady and was admitted to hospital with stroke like symptoms including a non epileptic seizure. Scans were normal so saw neurologist today who basically said I was making it up. A friend by this time had discovered stroke like symptoms can occur as part of an autistic shutdown but when I mentioned to neurologist he was extremely dismissive said it can’t possibly be caused by autism and shutdowns don’t happen either. I get them a lot which sometimes leaves me non verbal which can last days. I live alone and have no help or support. I really need to get these symptoms recognised as soon as possible so doctors and other healthcare professionals can understand and how to help. Paramedics are also very dismissive of shutdowns when they were called to me when I fainted and when I came round I was non verbal. They insisted I hadn’t really fainted it and being non verbal was just bad behaviour.
I don’t know what to do or where to turn. Any advice and how I can get it sorted on my medical records and it recognised. Feeling very vulnerable, lonely and scared.
My first thought is that it’s very good news that all your scans were normal. I think you’re right that nhs services have a very poor understanding of the healthcare needs of autistic people. I’ve experienced this myself - they can be very unsympathetic and don’t understand our specific needs. I feel a huge amount of training and awareness raising is required - but with things as they are with the nhs I don’t think that’s going to happen any time soon sadly. I think progress like that won’t happen for years due to how overstretched all these services are. Do you have a diagnosis of autism on your medical records? If so that’s at least helpful. But often it can come down to the individual staff you come across and how informed they are. NHS staff who are overstretched and tired often do badly when it comes to understanding complex patients. I’m sorry - this must be so distressing for you and you deserve much better from the people who are meant to be helping you. I’m sorry you’re feeling so vulnerable, lonely and scared. I can relate because I have a lot of fear about my own health issues - I spend quite a while in hospital a couple of years ago and I was very traumatised by the whole experience. It’s left me with terrible anxiety about ever going into any medical setting again. Like you I felt my autism was not understood in hospital.
Please know that lots of us on here understand, and you are not alone. This community is here for you whenever you need to talk. Have you had any treatment for your anxiety?