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.
NAS75715 said:I’m a 52 autistic lady
Do you have an official diagnosis from a psychiatrist / psychologist? If so, present it to your GP and ask for it to be entered into your medical records.
I would also read up a lot more on autism so you can identify the symptoms and provice references to pass to the doctor when you next see them. There is a good chance that an older doctor may have limited knowledge of autism and possibly have poorly informed opinions on the subject so a reference to a reputable medical reference will carry weight.
I would also consider getting a sunflower lanyard to wear when in the presence of medical staff as this highlight you as being autistic and should at least make paramedics etc ask themselves what it means before they start blaming you for the symptoms.
Anxiety tends to be the root cause of most shutdowns so it is worth learning to control it if you are able. A good book to read on the subject is:
Asperger Syndrome and Anxiety - A Guide to Successful Stress Management - Nick Dubin (2009)ISBN 9781843108955
We are about the best support system you will find out there as an adult unfortunately but don't hesistate to ask for advice as there are may knowledgeable and kind people on here on the subject.