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.
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!
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.
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 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.
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.
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.