Autistic Burnout

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?

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.... 

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. 

Hi BlueRay,

I agree that medical professionals can seem to struggle when presented with these symptoms, and that self-assessment can be useful to us and them. If you don’t mind me asking, were the doctors your GP referred you to able to make a formal diagnosis of autistic burnout, or was it an assessment for ASD more generally? Or was your GP able to make a formal diagnosis of autistic burnout themself? I’ve not encountered a doctor actually giving a formal diagnosis of autistic burnout before, so it would be interesting to know if they have been given to others.

I’ve also shared your experience of being assessed for various other conditions, but my experience is that I was told that it was not them rather being offered them as diagnoses as you were. To clarify if there was uncertainty, I was not suggesting in my first post that Starbuck seek a diagnosis of CFS or anything else, just that they got a referral into neurology so that their case could be looked at by a specialist. My reason for this is that there are many neurological conditions (and possibly some elsewhere too, maybe to do with the heart or blood circulation?) which can share many of the symptoms, and to be safe I think it’s worth having them checked for and ruled out even if they're confident that autistic burnout is the issue. Having a specialist investigation may also give them better access to any treatments (medication or anything else) that they find might help, and perhaps also doctors’ notes if they need them (if doctors are reluctant to write a note without a diagnosis).

My experience is also different in that I have not found a medication (sleeping tablets or anything else) that would help, or a doctor who would be willing to make a prescription without a formal diagnosis. I suppose this is an example of the ‘lottery’ in healthcare.

I read your post below too, and want to add that I agree with what you say about resting and focusing on activities that you can do any enjoy, although I think the helpful extent of rest, unstructured days and isolation might vary from person to person. Nonetheless, I think, and I say this with a lot of caution, that there is a risk that depression could begin to form around a burnout situation like this if you were to focus on the negatives too much, so ensuring positives are present is very good advice.

I was offered the labels of chronic fatigue, fibromyalgia, anxiety, depression and eating disorder and I refused the lot. I told my doctor what it was and what I needed from him. It was autistic burnout, I was simply exhausted, I needed to rest and he can give me a sick note and make me a referral for an assessment of autism. He said I seemed to have diagnosed myself and I seemed pretty sure. I said yes and yes but that I needed the formal diagnosis to settle my mind and give me access to things I wouldn’t get access to without a diagnosis. I declined their offer of medication, I had to more or less demand they give me sleeping tablets after he tried to tell me they weren’t the answer. I told him they were my answer and they worked. I only needed one prescription like I knew I would and they did what I knew they would. So doctors don’t always know what’s best for you. I was simply exhausted, my senses were overloaded, I couldn’t think clearly, I needed to retreat from the world, not take anxiety tablets so I could carry on facing the world, the thing I needed to retreat from. 

The doctors CAN’T do anything. It’s a burn out. You need rest. It’s up to you if you take that rest but I was experiencing the same as you and it wasn’t getting any better, in fact it was getting worse. 

That’s when I decided I was going to give my body what it needed and I went into self induced isolation. I did end up taking anti depressants towards the end for two months which was so helpful (in hindsight) but I don’t take them now.

I’m slowly coming out of burnout and my main priority is to only ever do what I love from now on in a way which enhances and enriches my autism traits and therefore avoids burnouts in the future. This has some limitations, for example, it means I have to be aware of my sensory processing needs etc, my limits on how often I leave my house etc, how often I can be around people etc. So it’s a work in progress because when I was in burnout I couldn’t think straight at all. And since coming out of it and since diagnosis my whole life plans have changed, in terms of, I’m now going to be working with people with autism. 

As far as I managed to find out about burnouts, it says they typically last around three years. It can’t be rushed so it might as well be enjoyed. I might not have food or whatever some days but I’m  getting the rest I need and I enjoy it. Mostly by sleeping, a lot, barely getting washed or dressed, I had no distinction between night and day, I was either in bed for days or out of bed for days. That almost total retreat from the world was bliss. This happened to me a few years ago but I lived in the middle of nowhere then, miles away from anyone I knew or my family, my nearest shop was miles away, I was in contact with nobody then, not even my son but I recovered much quicker. This time it’s taken me longer because of going into the job centre and living near my family. They couldn’t stop themselves from checking up on me etc. But I’m coming out of it now. Oh, and I watched a lot of old black and white films. YouTube is packed full of them so I never ran out of films to watch. 

I had this few days ago. It was very bad one. Every trick I know to try control it would not work. I went to the GP just because it was so intensive.

It nothing like an headache it more like you brain normaly is runing at 50MPH and then for no reasion it gone to run at 16000MPH.  Sometimes during or after I lose the abilty to speak but I am able to do simple hand signs thumbs up or down and point to things.

I would use verious stims to try and regain control like pinching my fingers and thumbs. Lift my hand up above my head (like wanted to say something school). Rub my hands around my face. Play with keys throw my finges. Click pens. The list goes on and on.

There can be other issues going on that isn't Autism, talk to GP about idea possibility of send you to a sleep clinic.

Hi Starbuck,

I’m interested in this question too, so thank you for raising it (it even convinced me to register with this website to join in this discussion). I’m not sure how useful my reply can be to you, but hopefully there’s something helpful in it somewhere.

To answer your question, “can anyone relate to this and if so how have to managed to recover?” , I can say (1) yes, I can relate to it, and (2) unfortunately I haven’t found a way to recover yet (but I remain hopeful). I have experienced a lot of similar symptoms to yours (not identical, but very similar), so I know what it’s like. I don’t know quite how you’re experiencing it at the moment, but I know it can be very bad, even quite seriously disabling, at times.

I’ve also read about ‘autistic burnout’. I use inverted commas because I have seen it called several different things, but I think this is probably the most common name. The problem I have encountered is that most, if not all, of the information is on forums similar to this of people who are experiencing/have experienced these symptoms reporting them and discussing them amongst themselves. I haven’t found any professional medical description to match the condition. I imagine you have found the same thing, although I would be interested to know if you or anyone else knows of any proper medical descriptions of the condition.

I’ve also raised the condition in its ‘autistic burnout’ description with medical doctors, but they have always dismissed it as an invention of the internet. As far as I can tell, it is not a medically recognised condition in itself in the UK, although again I would welcome anyone to correct me on this if I’m mistaken.

I understand the difficulties you can face bringing these symptoms to medical doctors, and I have been through the process on several occasions. However, the bit that causes me trouble is that the GPs and hospital told you that there was ‘nothing they can do’. Unfortunately, I can imagine certain doctors saying this in practice, but really I hope they would look to do something better for you than that as you are describing clear medical symptoms to them. If you are happy to (I would understand why you might not want to), do you know why they told you that there was nothing they can do?

If you want to continue looking for medical help, I suggest the following. Before I do, I just want to emphasise that I am not a doctor or an expert in any other way, so I can only offer ideas based on my personal experience. If you went back to your GP (if you have several GPs, maybe ask to see one who you have had positive help from in the past), could you ask them for a referral to see a specialist? The symptoms you describe must at least raise a question about chronic fatigue syndrome (I’m not saying for a moment that that is what you have, but I think it is a question a doctor should consider), and maybe if you got to see a neurologist or similar they may be able to help more. When I said above that it is not a medically recognised condition ‘in itself’, I did that because, although I don’t think it is recognised in itself, there are other diagnoses that might be appropriate instead (within neurology in particular) and might offer you some help.

I hope, however, that medical knowledge about this might improve in the future. There seems to be a noticeable number of people with ASD reporting these symptoms which medical doctors struggle to classify, so I think medical research is needed in this area. If anyone knows of any, I would be interested to see it.

Finally, I hope you feel better soon!