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I rarely have meltdowns but last week I had the worst one of my life

rory.doctor07

I'm really shaken. I haven't experienced something like this for about 10 years and it felt a lot worse as an adult and I feel awful for it.

On Thursday I was slightly concerned about a chest pain I'd been having (which turned out to be nothing in the end) so I phoned the GP but they were fully booked for today and I was going away that evening for a few nights, so they told me to call 111 to describe the feeling and they'd tell me what they think I should do about it. So I called 111 and they told me to go to A&E as a "precaution". This was at about 1pm and I had a train to catch at 6, and stupidly I thought I'd be out in time because I guessed I'd just have to go through triage or something before they could tell me there was nothing abnormal about my heartrate or blood pressure or whatever.

But how wrong can a man be,,,

(BY THE WAY I DO NOT BLAME ANYONE FOR THIS. I know the insane pressure that's on the NHS and how hard the staff work and I'm very thankful for them, but of course you can't prevent a meltdown just by using reason.)

After 3-4 hours in the waiting room I started to get anxious because I knew I would have to completely change my schedule that I had carefully planned. I got really fidgety and irritated by things around me and apparently started using the wrong tone with my mother who was there with me. I excused myself to go to the toilet because I needed to be on my own, and when I shut the door I just completely lost my *** - crying, shouting, punching myself and eventually curled in on myself on the floor until my mum found me when it was my turn to see the doctor.

They checked all my signs which were fine and did an ECG too. I was promised I could go home straight after they checked the results because they couldn't see any issues, but then the doctor said there was a slight abnormality so I couldn't go yet because he had to do another blood test on me. I'd more than had enough by then because it had been 5 hours or more (and yes I know that is normal for A&E but it doesn't matter when you're about to have a meltdown), but luckily he said he'd get the results within the hour and I could go then. And I was able to wait in the IV room where it was quieter.

That was at about 7pm I ended up waiting over 2 hours. After an hour passed, I was seriously anxious and as time went on it got worse and I couldn't stop crying. My mum went to ask the doctor (politely of course) how much longer he thinks it might take) and he said it was still processing, and at that point I went out there and started pleading with him and my mum to let us go home because I just couldn't take it anymore. He said it would be done in 20 minutes but I couldn't even accept that at that moment, and I was crying so hard and all I could say was I need to go home, quite loudly but I just couldn't care less.

I went into the toilet again and suppressed the screaming as much as I could. also hitting myself so hard that the marks are still there. There was this awful feeling that made me desperate to get out of my body but there was just nothing I could do of course. At least there was a light switch so I could lay on the floor and cry in complete darkness for a little bit of relief. After a bit more than 20 minutes I went and asked if it was ready yet but I was told to wait "a few more minutes", but at that point I didn't believe them. I was just saying over and over that I need to go home and there was no reasoning with me even though there was literally nothing that could be done about it. I ran back to the toilet for a while an kept violently hitting myself and kicking the walls etc.

Eventually they said I could go and wait in the car with my mum which I did but it didn't really help since all I wanted was to go home. I literally ran out of there, all the way to the car, shut the door and screamed bloody murder in there. My mum caught up and I kept going, frustrated as hell that nobody could understand me. Not long after, the doctor called my mum (he took her number before we went) and said all was fine so we could go home.

I started to calm down then. But now I have to deal with the aftermath. My mum reminded me later that I was screaming at her while she was trying to talk to me and I've been trying to explain to her that there was nothing I could do about it at the time. No one is used to me having a meltdown, because I always get described as "high functioning" I'm not expected to have meltdowns at all (even though I do on occasion. I contain them until I'm alone.) In the middle of the meltdown she was saying stuff like "you're not special", "everyone is in this together", "they're working as fast as they can" and also reminded me of the guy who said he'd been there for 24 hours in the IV room. But a meltdown doesn't care what's causing it.

I feel awful now. I'm so embarrassed. I'm 18 and everyone saw me crying uncontrollably to my mum and that poor doctor, not taking anything for an answer. I just didn't care. I'm scared something like that will happen again.

  • Hi , it sounds like you had a big one, all right. I'm sure a lot of people here can relate to your experience.

    This wasn't your fault and you have nothing to be ashamed about. Your brain is wired to do this to you every now and then. I see from your story that you were exposed to a whole bunch of major triggers at the same time, so with your (our) brain wiring, this sort of thing just happens. All you can do is learn from the experience, figure out ways to identify and cope with some of those high stress triggers, and hope the next meltdown isn't as unmanageable.

    My last meltdown happened because I heard three bad pop songs in a row on the radio! It felt like a panic attack. I lost my speech, felt I was about to explode (at the dinner table), and had to leave the room and calm down for an hour. I was at home, so at least I had that option. Your situation sounds a million times tougher to deal with—and you were trying your best to deal with it, isolating yourself as best you could, doing your best to be patient, etc.

    One thing I've found (and this is not just me, I'm sure) is that people telling me to calm down is the absolute worst thing they can do. I can't calm down, that's the problem! Telling me to calm down just makes things worse, as now I'm also getting angry at people for not understanding.

    You'll need to train those around you as to how best to help you cope. Understanding the causes of a meltdown is probably a good place to start. Here are some links (and see the NAS link in another post):

    Your mother was there for you and it sounds like she was doing her best, but she's probably out of practice if you haven't had a meltdown in years. Read through those pages together. There are also some good videos on YouTube about meltdowns that will help to destigmatise the whole experience.

    I hope you're feeling better. And good news about the old ticker, eh?!

  • I'm in my 40's.  When I finally burned out, I was having meltdowns and panic attacks almost daily.  I still have them, just not as often.  I also have what is known as white coat syndrome, so I avoid hospitals, etc to the maximum extent possible.  I can understand being misunderstood with this condition.  After everything I've gone through to put my life back together, I no longer hold back.  I'm not ashamed to ask a doctor if they can turn down the lights, if I can wait somewhere where I can stim myself down, etc.  Hope you can find new ways to help yourself out in these situations.  Also, the comment someone else made about not worrying about how long it takes is real, unfortunately.  I just have learned to bring something to keep myself busy, phone, etc., or just disassociate my way through it.  Also, don't feel embarrassed, we all have hard days.  Take care.  

  • I can see how it would be a troubling experience.

    Maybe there is something to be learned to make it easier in future.

    1. When something unexpected happens, you need to decide to either full engage, which means this is more important than other plans, or postpone it. Trying to do both is too stressful as you are not in control.
    2. When not in control of things, try to recognise this and accept it. It will take as long as it takes. Try to find something else. Use the time to plan other things, or to think about stuff you have been putting off, or just try mindfulness e.g. blank your mind and just drift and try to refresh yourself  Doing something with the time means it is not a waste. It wasn't what you planned, but you get something out of it.
    3. Don't get obsessed with time. Everything takes longer than you think it will. Especially hospitals. An hour becomes half a day, becomes an overnight stay, etc.  For most things I expect them to take double what they say, if it finishes sooner it is a bonus. For hospitals everything uses a day. Even if it doesn't physically, mentally it does.

    On point 2, in Robert Heinlein's book A stranger in a strange land, from where the word grok came, the character there has the concept of just patiently waiting as long as it takes from the Martians. I only read the book once at least 30 years ago, but that idea struck me at the time and I have not forgotten it.

  • I'm really sorry to read that you experienced that.   Have you got anyone else independent, that you can turn to for support?    I just wondered if you think that would help.

    I really feel for you being upset.     

  • in reply to Autismman
    Autismman said:
    It’s difficult to witness distressed behaviour, it can seem as if the individual is “acting up” or “being dramatic”

    The worst part is probably the violence in terms of perception - Roy was only violent to himself and inanimate objects but when an uninformed person sees this, they start to flash up ideas that this person is dangerous and needs to be locked up "for their own good" which is likely to make things even worse.

    I can only imagine the distress that unintentionally causing someone else harm while in this state would cause but the mere idea of it scares me.

    Finding ways to bring yourself down from a high anxiety state would seem the only viable avoidance tactic - have you worked with any of these?

  • Hi Rory.doctor07, 

    Thank you for posting to the community. I am sorry you experienced a meltdown last week. It sounds like you already have a good understanding of meltdowns but I just incase you are interested we have some help and guidance on the NAS website you may be interested in: 

    https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences

    I hope this helps.

    Gina Mod 

  • I feel we have an awfully long way to go with others understanding the condition. It’s difficult to witness distressed behaviour, it can seem as if the individual is “acting up” or “being dramatic” but the truth is the person is in that moment overwhelmed with emotions, the logical brain has gone on holiday. I would say as you age things like this will become easier due to you learning more about yourself and autism, it’s really important though that you acknowledge others reactions to you as a lack of education on their part. You are the one with the “disorder” (I know some are not keen on that word) but that’s all we have to use right now. Part of having this means you can give yourself a break sometimes because it’s more productive to your wellbeing doing so. 

  • I don't think those who have never experienced a meltdown can properly appreciate that it is a loss of control. That we cannot make rational decisions in those moments or think about how it is affecting others. I'm sorry you had that experience.