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Live330
Tufted Titmouse
Tufted Titmouse

Joined: 16 Oct 2015
Posts: 40
Location: San Diego

27 Apr 2021, 7:31 pm

Hi everyone, curious if any of you can relate / is this a "me" thing or an "autism" thing? Has anyone gone to the doctor / taken medication for this and found relief?

I have always had extreme problems with sleep since I was born. When I was a baby and small child, my parents said I slept all night, and all day, and all the time. When I got older, I struggled with extreme insomnia, and I can never fall asleep. But when I do fall asleep, I really struggle waking up, often sleep hours upon hours and have a hard time waking up. With all that being said, at first I thought it was only sleep problems. But now I'm realizing I am tired and just exhausted all the time, even when I've slept for 10-12 hours on a weekend, I still wake up so tired. And only recently did I begin to realize that this is not everyone's experience / not normal. Is this an indication of "autism burnout"? Something else? How is it that I can be exhausted when I don't get sleep AND when I do?

Thank you so much for your thoughts! Any help would be greatly appreciated.

-Cole



Mountain Goat
Veteran
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Joined: 13 May 2019
Gender: Male
Posts: 11,271

27 Apr 2021, 8:15 pm

Different peoples experience of what they call burnout are different, and I am still waiting to be assessed, so I am not sure where I stand.


My experience is that when burnout hits, I am mentally active (Though tired) but my body is exhausted. I keep going over and over the previous days events in my mind and will be going over what I expect to happen the next day, so I only get 4 or 5 hours sleep.
This is only a little part of the whole picture as burnout esculates out of control. It starts to effect me both mentally in strings or multiples of shurdowns, and also my masking abilities start glitching, and when I last had a burnout, I would forget how to do everyday things now and then... Like how to walk. I remember standing in the middle of a car park trying to work out how to walk as I had completely forgotton how! (Previous burnouts did not get quite so bad, but I have had my mind jumping back and fore through time in past burnouts).
I would get many moments of standing with complete mindblank not even knowing what I was doing etc!

The lack of sleep bit hits like a tsunami esculating towards a shore.

Different people experience burnout in different ways and it takes different lengths of time to recover.
The minimum I found I needed where I quit work and did nothing so I could recover was around six months, BUT, each burnout that hit me was worse then the one before. The last one hit august to september 2019 and I am only now starting to do some things that I could do before the burnout hit. I get good days and not so good days... But I am not quite right yet.

The danger for me is that if I put myself back into work where each time I was working I hit burnout, I am scared that I will have another burnout, and with the pattern of how they hit me and how each burnout hit me harder then the one that hit before, I am scared that the next will leave me dissabled, as I came pretty close with the last one which is what scared me and prompted me to seek help. (I did not know who to turn to in the past as I knew nothing about autism or what I was going through was called, or even how to try to describe it to anyone, let alone a doctor, so I did not say anything and I just suffered. I lost my house, cars, jobs... All because I did not know what was happening to me or how to explain what was happening to me, though some have said that my experience was more severe so it may have been mental breakdowns? I do not know.
All I know was I had to unload all possible stresses and obligations. Quit job. Sell anything that has bills I can't cope with or needs my attention like my classic car and then my little camper and my house etc. Try to reduce all stress as much as I could, and I even was selling my model railways which is my special interest to unload, and I abandoned all future hopes and dreams, because I had to.



Live330
Tufted Titmouse
Tufted Titmouse

Joined: 16 Oct 2015
Posts: 40
Location: San Diego

28 Apr 2021, 10:09 am

Thanks so much for sharing your story - really helpful to realize I'm not alone, but I'm also heartbroken by how hard that must have been / is for you. I really hope you'll be able to pick back up your special interest at some point. That's so interesting you forgot something like walking / now that you mention it, I remember when I was in high school, I forgot how to tie my shoes, and I was so confused by the phenomenon!

I'm still trying to figure out how much I can handle at work without it costing me - it's just such a tough decision which jobs are ok and which jobs are not worth it because of the risk of burnout...



Mountain Goat
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Joined: 13 May 2019
Gender: Male
Posts: 11,271

28 Apr 2021, 12:47 pm

I had issues with one of the spray oils and some spray pints being triggers for shutdowns as some smells are triggers for me. It took me years and years to work it out what was happening, because in the past doctors had told me that the shutdowns (I never knew what they were called) were caused by "Some sort of allergy" but from the age of 18 onwards I repeatedly kept asking for an allergy test and was first told by doctors that they were not avilable on the NHS, but after about 5 to 7 years I found out they were, so I kept asking and I kept being told that the doctors did not have the budget to have me tested.
I foud out that the doctors could do a private test for a few thousand pounds and it took me three years to save the money, but I was denied it and told that I would be wasting my money.
I kept on asking and asking. As we live in an outlying area, my then doctors were getting something like £5 - 7k a year per person living here to do house callouts, and back then six of us lived here as my grandmother lived here. We often had to use A&E because doctors had many months to wait for appintments and certain conditions needed seeing to urgently, and our doctors did not do house visits... So why did they recieve the yearly payments?
I changed doctors after waiting eight and a half months of continual phoning to get an appointment after my heart jumped up and down and I was on the floor for a couple of hours and for months I felt cut in half round the middle of my body. I asked the receptionist if I should go to the A&E and she kept saying "Under no circumstances should I go" (The A&E had complained to my doctors as we had to use them in the past with my Dad and my Grandmother as we could never get appointments). I kept telling the lady the symptoms as I had not had that happen before.
When eight and a half months later I finally managed to get an appointment the doctor really became angry at me saying "Why didn't you see me earlier. I can't do anything now!"
I changed doctors with my mother after that, and the new doctors had to start gain as the old doctors had lost all our medical records from their computer.
There is such a difference! The longest I have ever waited with the new ones is 2 weeks. Often they can see me in a couple of days or if urgent, even on the same day! And it was really good that the old doctors had lost our records as I was able to try and work out what was going on with me of having a life that I have had to deal with shutdowns and not knowing what they are (I am on the list to be assessed for autism so this also can be confirmed or not as the case maybe, but I am certain I am right).
I asked rhe new doctors foe an allergy test and they said they could only do the basic 6 point test (Which I had been asking for since I was a teenager. I am now in my late 40's) and they areanged a test and it came up clear. They also arranged for my heart to be thouroughly tested in the hospital because my uncle on my Dads side, and all his children have had to have internal defribulators and pacemakers fitted due to a heart defect (The old doctors just listened via a stethescope and said my heart was fine. This new doctors arranged for the proper test), and so bit by bit I was able to find out what the cause wasn't which really helped find out what it is (If I am right, and I am certain I am right. See the link in my signiature about shutdowns and driving and that is soo accurate I thought I had written it myself!).

The worst part for me was going through partial shutdowns, shutdowns, and other associated autism traits all my life and be told by family and others like work collegues who did not understand that I was faking it to get out of whatever I was doing at the time, when I was often working while partly shut down which means I was putring in 1000% just to try to do anything, let alone work as well. It was sheer mental torture when ones body is shutting down to be told one is lazy etc, while one is stuck on the floor unable to move. The problem is that because it is not a sudden faint, it looks like I am pretending. (See the film of what a shutdownfeels like, except I will already be on the floor by the time my vision turns black).

The burnouts came in the last 15 years onwards after years of trying to push through shutdowns where I was told "Ignore it and it will go away" and "I get that" (When they clearly don't). "You just have to work harder to get used to working". (I was often working harder then anyone!)
If I had known what was causing them and about autism I would have avoided all the burnouts and half the shutdowns I was having and a whole lot of stress! I would have kept my house etc. I would have paid off my mortgage by now!