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.
The ignorance of some medical professionals about autism is shocking.
I suggest you also purchase or download one of the 'I am autistic' cards from this site, to attach to the sunflower lanyard.
https://www.autism.org.uk/shop/products/merchandise/alert-card
It is printed on there that autistic people sometimes 'go into shutdown if it is all too much'. Hopefully that with the NAS logo will be enough to convince any disbelievers you encounter. It really shouldn't be necessary as it is such basic knowledge about autism
Have you looked into the possibility of autistic catatonia if you are experiencing prolonged shutdowns? My mum was hospitalised with catatonia several times during her younger years but nobody ever made the link with autism.
https://www.autism.org.uk/advice-and-guidance/professional-practice/catatonia-autism