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Shutdowns

NAS75715
11 months ago

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.

  • 11 months ago

    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 Pensive

    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

  • 11 months ago
    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.

  • 11 months ago

    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? 

  • 11 months ago

    Sounds like they're defaming you.

    We know our own bodies best. Weekend before last, I called the out-of-hours Surgery about palpitations. Then, I took a break from drinking tea; at night. Then I had seven consecutive early mornings awake.

    It's all in phases. I was busy, last week. Therefore, taking it easy this week.

    Medical 'Experts' are mainly Jobsworths, these days.