I have read autistic burnout is a real thing and I am starting to think that I am suffering from it.
I have become very sensitive to noise, light, smells etc. to the point I am having regular shutdowns and the occasional mild meltdown. In addition, my speech has been slow/slurred and thought processes have been frustratingly fragmented and delayed/non-existent at times. Fatigue is a big problem where I am incredibly exhausted all of the time and spend more and more of my spare time in bed.
I have sought help on multiple occasions from my GP and hospital, but I have been told there is nothing they can do.
The only time I have experienced this in the past has been when I have had a breakdown or I am going through a very stressful time, but this was before my diagnosis.
Can anyone relate to this and if so how have to managed to recover? This particular time seems very hard to shift and managed that previous.
I am relying on sunglasses, ear plugs etc. more and more. I am resting when possible.
Sorry if my post is fragmented - struggling to get things out today.
First of all I would like to apologise, Starbuck, for starting a new thread that is related to yours just hours after yours.I hadn't seen your post and was reacting to a topic of autistic exhaustion raised in another thread.I am inclined to think that these things are never "just psychological" or "just physical". But that our bodies are a complex mix where everything influences each other. Your heightened sensory sensitivity during this period also reminds me of something else both my sister and I (both on the spectrum) went through after mild concussion. It took months and months to recover. The doctors called: "Hyperaesthetic Emotional Syndrome". Which it seems now is an old-fashioned term for burn-out related ailments (but is also mentioned as a reaction to trauma). But the name in itself is interesting: because of what you describe that in this burn-out fase you have very strong hypersensitivities... which not all people with burn-out experience. It can take months for these hypersensitivities to calm down. Mindfulness and meditation did help both my sister and me (but I find it impossible to keep up the discipline. There is a good book in Dutch about the specific problems for mindfulness for people with ADHD and also another book for ASD - because the mainstream instructions aren't always that useful for us). I wonder if it has been translated.My doctors all say that resting and accepting is the only way forward. I feel a frustrated because I feel there should me more I could do to heal myself. Interestingly, I notice my symptoms are much more better when I am in nature. I have noticed that I am quite sensitive to all the urban sounds especially cars and electric sounds etc. And no one believes me, but I get a headache when I use my bluetooth speaker too long (it is a good quality one, but still).
My CBT therapist has helped in a way. She makes me feel angry sometimes, but there is some truth in what she says - in a sense: being aware of my thoughts and especially the negative thoughts is really good. Because on the one hand you have this lousy reality - and the thoughts you think and the way you think can make it far worse (worry about the future, worry about things getting worse, worry about your life, about being a burden, feeling guilty, etc.)
But on the other hand I do feel that there is far more support that could be offered to people with chronic fatigue issues - because it is very incapacitating.
I'm sorry I don't know any good answers. So I am following this thread with great interest.
I'm reading through this in order to learn how to help my daughter who is 13 and, I guess 'high functioning' ASD. I have to admit that right now I'm struggling to come to terms with quite a few things concerning her past and feelings of failure and questions as to what happens next.
Last year, she was attending her first year in high school and appeared to be doing not too badly. I'd walk her just over half way to school (to the point where other kids commonly went the same route) at which point she'd insist on going by herself since no other child had their mums walk them to school and she wanted to appear as normal as possible.
She ate alone or went to the resource room that the school had set aside for her and the other ASD kids and she'd come home and seem happy enough.
Sleep was a problem though, but since it had been a problem since she started school at age 4 in Canada, I thought that this was just part and parcel to her way of being.
I wish school had been easier for her, even back in Canada and I fought as much as I could to get her teachers who I knew from sending her siblings to the school, were at least gentle in approach. Had I have known of her diagnosis back then, things could have been much better, but I didn't and so struggled to parent this child who was so different from her siblings.
She had pica and was the 'wierd' kid in trouble constantly for licking things and eating the crayons. Even from lining up to go into school (in Canada, this was always a trouble spot since the kids would punch each other, kick each other and wrestle etc, totally unruly behaviour which most kids dealt with by ignoring and avoiding) I would bring her in away from this since the teachers seemed to have no control and this upset her greatly. But, she was always in trouble for not finishing work, spacing out, getting frustrated and ripping up papers, the list goes on. There were several times when she'd run away from school and I'd get the phone call at work and would have to find her and drag her back.
I was relieved when we moved to Scotland 5 years ago and even more relieved though curious when a week into her school career here, her teacher suggested she be tested. I'd never even thought about autism and neither, apparently, did her doctor in Canada.
So she was tested and the diagnosis given and she seemed to dislike Glasgow with all of the busyness so she and I moved here to Ayr. She started high-school and things seemed to be going OK untill about April when she started complaining of severe tummy aches and bad headaches. Her sleep was still as it always was ...3 or 4 hours per night tops even with melatonin which was now not working so well even to get her to go to sleep.
It seems, I found out in October, that the resource teacher she had bonded with at school, had gone on maternity leave and no one had thought to tell me. My daughter began refusing to go or stay in school and was increasingly refusing to leave the house at all. Whereas before, we'd go for walks together, now she was barely leaving her room.
This year came and she went to school the first day, and left with a headache at 10 am. She's not been back since.
I've looked into home education and we now have a tutor who comes in for 2 hours on the Monday.
She's sleeping. Since the day I told her "no more school" she's been sleeping...alot. Without meds for the first time in her life, she's getting 10 to 12 hours a day so, I'm guessing she's finally getting REM sleep which she'd been missing for so long.
But, I can't get her to leave the house hardly at all and she seems to sleep for most of the day getting up at about 11pm or midnight and back to sleep sometimes as early as 6 am or as soon as daylight appears. She's insisting on low lights and isn't working that well yet with the tutor, though he keeps assuring me he's seen this before and not to despair.
For my part, I'm sort of doing swing shifts since I have to function in the day as well as nights. I'll talk with her when she wakes up, make her foods she enjoys and ensure its there for her, and then either sleep a little on the couch or go to bed for a few hours...wake up before she goes to bed so that she can talk to me if she chooses.
She's starting to open up a bit more to me, and spends her time mostly drawing either pen and paper or on the computer. She's very gifted with her art and takes joy in posting on Deviant Art and hearing what people say, and commenting on theirs.
This is the first time I've heard of this burnout thing, but I'm guessing that after years of trying (and failing) to 'fit in' this is precisly where we are now.
I'm wondering, other than what I'm doing, what else can I do to help her.
We've a 4 day trip planned for mid January...Ive rented a small cabin in the middle of nowhere for us to connect a little bit with nature .. Just her, myself and my mother who she seems to have an easy time with.
I'm wondering if when she next gets her glasses, if I shouldn't ask for a pair of shaded ones too, since light seems to cause her more stress. She doesn't like noise, but also doesn't like headphones or whatever their called ... seems to be very sensitive to drawing attention to herself or appearing 'abnormal'.
So many questions....
School was a horrible time for me so I sympathise with your daughter.
The fact that she is sleeping now could mean that school was causing her so much anxiety that she was constantly wired and in flight or fight mode. Most people with ASD struggle with sleep at the best of times, but the fact that she is sleeping better will help her to regulate her mood and ability to cope better. I can also relate to her sporadic sleeping pattern as this mimics my sleeping habits as well as has been a continual problem throughout my life. I am now in my mid 30s and still struggling. The best thing I cam suggest is start building some routines slowly and bit by bit that will help her to develop a healthy sleeping pattern. This can be as simple as setting a wake up time and set time for breakfast. Then see if you can start to develop an evening routine that will help her wind down and be in bed for a set time. It's not as simple as it sounds as I constantly battle with this. I like routine, but if something disrupts my pattern it completely throws me out and I fall straight back into bad habits. As an adult this plays hell with my health and being tired, which when you have adult responsibilities and have to work can be very difficult to manage. Especially as other people don't seem to struggle with this so will never understand the challenge it causes.
I would work with the tutor to help build routines but also include your daughter. Don't push her too much but there is also a fine line so that she doesn't just get her way all the time.
Time away will help you but also be mindful that change can be stressful to some people with ASD so speak with your daughter to see if she needs details on what to expect to help minimise anxiety.
Also if she doesn't like headphones, would ear plugs be an option or is it the sensation of wearing them that's the issue?